Experiences of cancer patients in Poland throughout diagnosis and treatment.

PubMed

Godlewski, D; Adamczak, M; Wojtyś, P

2017-03-01

Previous studies have failed to explain why the mortality rate of cancer patients is higher in Poland than other countries in the European Union. We aimed to evaluate the health care system in Poland during the diagnosis and treatment of cancer. In this multicentre study, 125 cancer patients treated at 15 centres across Poland participated in focus group interviews in 2014. We identified and assessed crucial elements that affect a patients' experience from the early onset of symptoms, through to diagnosis and treatment. We found that the majority of patients were dissatisfied with the length of time taken to diagnose cancer. Throughout diagnosis, treatment and follow-up, patients reported a lack of communication from health care professionals. While dealings with oncologists and medical staff were viewed favourably, patients felt the cancer centres were not well organised. Patients recommended that having one doctor in charge of an individual's treatment and follow-up would improve patient care and well-being. A late cancer diagnosis may be contributing to the high mortality rate observed in Poland. In the future, new policies should be developed to reduce the time to cancer diagnosis, increase communication with health care professionals and improve the organisation of cancer care for patients. © 2016 John Wiley & Sons Ltd.

Using others' experiences. Cancer patients' expectations and navigation of a website providing narratives on prostate, breast and colorectal cancer.

PubMed

Engler, Jennifer; Adami, Sandra; Adam, Yvonne; Keller, Bettina; Repke, Tim; Fügemann, Hella; Lucius-Hoene, Gabriele; Müller-Nordhorn, Jacqueline; Holmberg, Christine

2016-08-01

To understand what cancer patients expect and may learn from other patients' experiences, as analyzed and sorted for presentation on a website called krankheitserfahrungen.de (meaning "illness experiences"). Mixed methods approach including log file analyses, survey data analyses and thematic analysis of focus group discussions. Users highly valued the wide range of patient experiences presented. The academic leadership of krankheitserfahrungen.de made them trust the information quality. Reading, watching and listening to other cancer patients' experiences gave users a feeling of hope and confidence. Searching for persons with similar experiences was a major way of navigating the website. Patient narratives as presented on krankheitserfahrungen.de provide a helpful resource, supporting cancer patients' engagement with their disease. Having access to such research-informed accounts of everyday cancer experiences was seen as a great contribution to existing available patient information. When health information websites include experiences, they should adhere to quality standards of qualitative research and encompass a wide range, so that users are able to find patients similar to themselves. Filter options are a helpful tool. A mix of written text and videos is beneficial, as users have different preferences. The inclusion of patient photographs and video interviews facilitates authenticity and closeness. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Differences in experiences of care between patients diagnosed with metastatic cancer of known and unknown primaries: mixed-method findings from the 2013 cancer patient experience survey in England

PubMed Central

Bracher, Mike; Drosdowsky, Allison; Richardson, Alison; Symons, John; Mileshkin, Linda; Schofield, Penny

2017-01-01

Objectives To explore differences in experiences of care reported in the Cancer Patient Experience Survey (CPES) between patients with cancer of unknown primary (CUP) and those with metastatic disease of known primary (non-CUP); to determine insights pertaining to the experiences of care for CUP respondents from free-text comments. Design Two separate, but related, studies, involving secondary analysis of existing data. Using frequency matching of CUP and non-CUP patients, statistical comparisons of responses to CPES questions were conducted. Free-text comments from CUP respondents were analysed thematically. Setting and participants The CPES questionnaire comprises 63 closed questions measuring 8 areas that relate to experience of care and 3 free-text questions. Questionnaires were mailed to all adult patients (aged ≥16 years) in England with cancer admitted to hospital between 1 September 2013 and 30 November 2013. Results Matched analysis of closed response items from 2992 patients found significant differences between CUP (n=1496) and non-CUP patients (n=1496): CUP patients were more likely to want more written information about their type of cancer and tests received, to receive their diagnosis from a general practitioner (GP) and have seen allied health professionals, but less likely to have understood explanations of their condition or had surgery. Freetext responses (n=3055) were coded into 17 categories and provided deeper insight regarding patient information and interactions with GPs. CPES data may include a preponderance of patients with favourable CUP subtypes and patients initially identified as CUP but whose primary was subsequently identified. Conclusions These are the first large-scale studies to explore the experiences of care of CUP patients. The significant differences identified between the experiences of CUP and non-CUP patients suggest CUP patients require more psychosocial support and specific interventions to manage diagnostic uncertainty

The situation-specific theory of pain experience for Asian American cancer patients.

PubMed

Im, Eun-Ok

2008-01-01

Studies have indicated the need for theories that explain and target ethnic-specific cancer pain experiences, including those of Asian Americans. In this article, I present a situation-specific theory that explains the unique cancer pain experience of Asian Americans. Unlike other existing theories, this situation-specific theory was developed on the basis of evidence, including a systematic literature review and research findings, making it comprehensive and highly applicable to research and practice with Asian American patients with cancer. Thus, this theory would strengthen the interconnections among theory, evidence, and practice in pain management for Asian American cancer patients.

Female cancer patients and caregivers: experiences in the workplace.

PubMed

Feldman, F L

1986-01-01

Working women who have a cancer history, or who have some responsibility for the care of relatives with cancer, often face a cluster of attitudes and behaviors in their employers and co-workers to which individuals touched by other kinds of illness are not exposed. Patients and caregivers may find that others in the work environment are compassionate and helpful in many ways, but may also encounter considerable hostility and fear expressed verbally or as shunning or other attitudinal problems in the worksite. They may also be targets of overt or covert discrimination. These problems are explored using data from three recent studies on workplace experiences of white collar and blue collar workers who had recovered from cancer, and of former pediatric cancer patients.

Relating to the Experience of Contingency in Patients With Advanced Cancer: An Interview Study in U.S. Patients.

PubMed

Kruizinga, Renske; Jafari, Najmeh; Scherer-Rath, Michael; Schilderman, Hans; Bires, Jennifer; Puchalski, Christina; van Laarhoven, Hanneke

2018-03-01

Being diagnosed with incurable cancer can be a life-changing experience, evoking different spiritual questions and needs. Confronting a serious life-threatening event occurs not only often unexpected but also can disrupt a person's self-image and ideals of their personhood. This confrontation makes it difficult for people to integrate it into their personal life story-otherwise referred to as an experience of contingency. Different modes of relating to the contingent life event of having cancer have been studied in a Dutch patient population. Here we present an interview study in an U.S. population with advanced cancer patients. We included eight American patients with advanced cancer from the George Washington University Cancer Center. All patients were interviewed twice discussing their life events and life goals using a semistructured interview model. All interviews were transcribed and analyzed focusing on how patients described the way they related to the experience of having advanced cancer. The constant comparative method with a directed content analysis approach was used to code the themes in the interviews. The analyses show that the four modes of relating to contingency that we found in the Dutch study population can also be found in an American advanced cancer patient population. Differences were found in the extended way American patients described the fourth mode of "receiving." This study ensures a broader and deeper understanding of relating to the experience of contingency in having incurable cancer, which is crucial in developing accurate spiritual care in the palliative phase of patients. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Racial and Ethnic Disparities in Patient-Provider Communication With Breast Cancer Patients: Evidence From 2011 MEPS and Experiences With Cancer Supplement

PubMed Central

White-Means, Shelley I.; Osmani, Ahmad Reshad

2017-01-01

The current study explores racial/ethnic disparities in the quality of patient-provider communication during treatment, among breast cancer patients. A unique data set, Medical Expenditure Panel Survey and Experiences With Cancer Supplement 2011, is used to examine this topic. Using measures of the quality of patient-provider communication that patients are best qualified to evaluate, we explore the relationship between race/ethnicity and patients’ perspectives on whether (1) patient-provider interactions are respectful, (2) providers are listening to patients, (3) providers provide adequate explanations of outcomes and treatment, and (4) providers spend adequate time in interacting with the patients. We also examine the relationship between race/ethnicity and patients’ perspectives on whether their (1) doctor ever discussed need for regular follow-up care and monitoring after completing treatment, (2) doctor ever discussed long-term side effects of cancer treatment, (3) doctor ever discussed emotional or social needs related to cancer, and (4) doctor ever discussed lifestyle or health recommendations. Multivariate ordinary least squares and ordered logistic regression models indicate that after controlling for factors such as income and health insurance coverage, the quality of patient-provider communication with breast cancer patients varies by race/ethnicity. Non-Hispanic blacks experience the greatest communication deficit. Our findings can inform the content of future strategies to reduce disparities. PMID:28856941

Examination of pain experiences of cancer patients in western Turkey: a phenomenological study.

PubMed

Akin Korhan, Esra; Yildirim, Yasemin; Uyar, Meltem; Eyigör, Can; Uslu, Ruçhan

2013-01-01

This study aims to explore the individual experience of living with cancer pain. This qualitative study was performed by using a phenomenological research design. In-depth and open interviews with participants were conducted to collect the data and a qualitative Colaizzi method of analysis was performed. Following the analysis of the data, the expressions made by the cancer patients during the interviews were grouped under 5 themes. Consistent with the questionnaire format, 5 themes and 19 subthemes of responses were determined describing the pain of the cancer patients. The results of our study have demonstrated that cancer patients go through negative physical, psychological, and social experiences due to the pain they suffered.

The Symptom Experience of Patients With Advanced Pancreatic Cancer: An Integrative Review.

PubMed

Tang, Chia-Chun; Von Ah, Diane; Fulton, Janet S

Pancreatic cancer is a devastating disease with limited treatment options. More than 80% of pancreatic cancers are diagnosed in advanced stages and often have debilitating symptoms, making symptom management paramount, yet the symptom experience of patients with advanced pancreatic cancer (APC) is not well understood. The purpose of this integrative review is to synthesize the current evidence regarding the symptom experience of patients with APC. An integrative literature review was conducted to identify the patient symptom experience in studies published from 2005 to 2015. Sixteen studies met the inclusion criteria. All studies used a quantitative approach; 44% were quasi-experimental, 31% were descriptive, and 25% were correlational. Physical symptoms, especially pain, were the primary focus in most studies. Fatigue, loss of appetite, and impaired sense of well-being were prevalent and reported by patients to be of high intensity. Few studies examined psychological symptoms in patients with APC, although anxiety and depression were noted. Findings suggest that physical and psychological symptoms are prevalent, some with high intensity. Preselection of symptom inventories limits our ability to fully understand the symptom experience of patients with APC. Future qualitative work is needed to provide a more in-depth understanding of symptoms, especially symptom quality and distress level, from patients' perspectives. More studies are needed to explore psychological symptoms and the interaction of physical and psychological symptoms. Findings help healthcare givers to better understand the symptom experience of their APC patients.

Exploring patient experiences of neo-adjuvant chemotherapy for breast cancer.

PubMed

Beaver, Kinta; Williamson, Susan; Briggs, Jean

2016-02-01

Neo-adjuvant chemotherapy is recommended for 'inoperable' locally advanced and inflammatory breast cancers. For operable breast cancers, trials indicate no survival differences between chemotherapy given pre or post-surgery. Communicating evidence based information to patients is complex and studies examining patient experiences of neo-adjuvant chemotherapy are lacking. This study aims to explore the experiences of women who received neo-adjuvant chemotherapy for breast cancer. A qualitative approach using in-depth interviews with 20 women who had completed neo-adjuvant chemotherapy for breast cancer. Interview data were analysed using thematic analysis. The sample included a relatively young group of women, with caring responsibilities. Five main themes emerged: coping with the rapid transition from 'well' to 'ill', information needs and decision making, needing support and empathy, impact on family, and creating a new 'normal'. More support was needed towards the end of chemotherapy, when side effects were at their most toxic, and decisions about forthcoming surgery were being made. Some women were referred to psychological services, but usually when a crisis point had been reached. Information and support would have been beneficial at key time points. This information is vital in developing services and interventions to meet the complex needs of these patients and potentially prevent late referral to psychological services. Specialist oncology nurses are able to develop empathetic relationships with patients and have the experience, knowledge and skills to inform and support women experiencing neo-adjuvant chemotherapy. Targeting key time points and maintaining relationship throughout neo-adjuvant chemotherapy would be highly beneficial. Copyright © 2015 Elsevier Ltd. All rights reserved.

Cancer patient experience with navigation service in an urban hospital setting: a qualitative study.

PubMed

Gotlib Conn, L; Hammond Mobilio, M; Rotstein, O D; Blacker, S

2016-01-01

Cancer patient navigators are increasingly present on the oncology health care team. The positive impact of navigation on cancer care is recognised, yet a clear understanding of what the patient navigator does and how he/she executes the role continues to emerge. This study aimed to understand cancer patients' perceptions of, and experiences with patient navigation, exploring how navigation may enhance the patient experience in an urban hospital setting where patients with varying needs are treated. A qualitative study using a constructionist approach was conducted. Fifteen colorectal cancer patients participated in semi-structured telephone interviews. Data were analyzed inductively and iteratively. Findings provide insight into two central aspects of cancer navigation: navigation as patient-centred coordination and explanation of clinical care, and navigation as individualised, holistic support. Within these themes, the key benefits of navigation from the patients' perspective were demystifying the system; ensuring comprehension, managing expectations; and, delivering patient-centred care. The navigator provided individualised and extended family support; a holistic approach; and, addressed emotional and psychological needs. These findings provide a means to operationalise and validate an emerging role description and competency framework for the cancer navigator who must identify and adapt to patients' varying needs throughout the cancer care continuum. © 2014 John Wiley & Sons Ltd.

Looking beyond disfigurement: the experience of patients with head and neck cancer.

PubMed

Henry, Melissa; Ho, Angela; Lambert, Sylvie D; Carnevale, Franco A; Greenfield, Brian; MacDonald, Christina; Mlynarek, Alex; Zeitouni, Anthony; Rosberger, Zeev; Hier, Michael; Black, Martin; Kost, Karen; Frenkiel, Saul

2014-01-01

Despite the frequent occurrence of head and neck cancer (HNC) disfigurement, little is known about its psychosocial impact on patients. This study aimed to understand the lived experience of disfigurement in HNC and explore what patients considered to be its influences. Fourteen disfigured HNC patients participated in a 45-to-120-minute in-depth, semistructured interview, which was analyzed qualitatively using interpretive phenomenology. A majority of participants (64 percent) were considered to be at an advanced cancer stage (stage III or stage IV). Patients' experiences revolved around the concept of a ruptured self-image (a discontinuity in sense of self). Forces triggering this ruptured self-image created a sense of "embodied angst", in which disfigurement served as a constant reminder of the patient's cancer and associated foundational malaise. Other influences fostered a sense of normalcy, balance, and acceptance. Participants oscillated between these two states as they grew to accept their disfigurement. This study's findings could guide supportive interventions aimed at helping patients face head and neck surgery.

Open Oncology Notes: A Qualitative Study of Oncology Patients' Experiences Reading Their Cancer Care Notes.

PubMed

Kayastha, Neha; Pollak, Kathryn I; LeBlanc, Thomas W

2018-04-01

Electronic medical records increasingly allow patients access to clinician notes. Although most believe that open notes benefits patients, some suggest negative consequences. Little is known about the experiences of patients with cancer reading their medical notes; thus we aimed to describe this qualitatively. We interviewed 20 adults with metastatic or incurable cancer receiving cancer treatment. The semistructured qualitative interviews included four segments: assessing their overall experience reading notes, discussing how notes affected their cancer care experiences, reading a real note with the interviewer, and making suggestions for improvement. We used a constant comparison approach to analyze these qualitative data. We found four themes. Patients reported that notes resulted in the following: (1) increased comprehension; (2) ameliorated uncertainty, relieved anxiety, and facilitated control; (3) increased trust; and (4) for a subset of patients, increased anxiety. Patients described increased comprehension because notes refreshed their memory and clarified their understanding of visits. This helped mitigate the unfamiliarity of cancer, addressing uncertainty and relieving anxiety. Notes facilitated control, empowering patients to ask clinicians more questions. The transparency of notes also increased trust in clinicians. For a subset of patients, however, notes were emotionally difficult to read and raised concerns. Patients identified medical jargon and repetition in notes as areas for improvement. Most patients thought that reading notes improved their care experiences. A small subset of patients experienced increased distress. As reading notes becomes a routine part of the patient experience, physicians might want to elicit and address concerns that arise from notes, thereby further engaging patients in their care.

Power relations in patient's experiences of suffering during treatment for cancer.

PubMed

Saarnio, Lotta; Arman, Maria; Ekstrand, Per

2012-02-01

This paper is a report of how patients who have cancer experience suffering in the context of power relations. Many studies in Sweden and in other countries have detected inequality in healthcare use and resources, including unseen influences that can be connected to gender and distribution of resources. Few studies have examined how multiple relations of power - such as gender, ethnicity, age and education - influence how people with cancer experience suffering during treatment. A hermeneutic design was used. Qualitative interviews were conducted with 12 women and 14 men receiving treatment for a variety of cancer diagnoses. The data collection was done at two hospitals in Sweden during 2008-2009. The interpretation of data was based on two theoretical perspectives - suffering and intersectionality. The results highlight patients suffering where two or more positions of power relations interacted with each other. Three main themes were identified: the complexity of control, the vulnerable effects of body changes, and the internal battle of survival. A vulnerable social situation for people with cancer concretely increased their suffering. Social inequalities, seemingly linked to social hierarchy, increased the suffering of people with cancer. For example, women with cancer with a low education belonging to an ethnic minority suffered more than highly educated patients belonging to the ethnic majority. © 2011 The Authors. Journal of Advanced Nursing © 2011 Blackwell Publishing Ltd.

Effects of interdisciplinary teamwork on patient-reported experience of cancer care.

PubMed

Tremblay, Dominique; Roberge, Danièle; Touati, Nassera; Maunsell, Elizabeth; Berbiche, Djamal

2017-03-20

Interdisciplinary teamwork (ITW) is deemed necessary for quality cancer care practices. Nevertheless, variation in ITW intensity among cancer teams is understudied, and quantitative evidence of the effect of different ITW intensities among cancer teams on patients' perceived experience of care is limited. This study aims to compare patient-reported experience measures (PREMs) of cancer outpatients followed by teams characterized by high vs. low ITW intensity. The study is designed as an ex post facto quasi-experimental study. Participants (n = 1379) were recruited in nine outpatient oncology clinics characterized by different ITW intensities. ITW intensities were evaluated using the characteristics of structure (team composition and size) and process (interactions among team members), as per West's seminal work on team effectiveness. ITW intensity was dichotomized (high vs. low ITW intensity). PREMs were classified and measured using validated scales corresponding to six dimensions: Prompt access to care, Person-centred response, Quality of patient-professional communication, Quality of the care environment, Continuity of care, and Results of care. Dichotomous variables were created for each dimension (positive vs. less positive experience). Multiple logistic regression analyses were performed to assess the association between ITW intensities and the six PREMs dimensions, while controlling for patient and organizational characteristics. PROC GENMOD was used to fit logistic models for categorical variables. Outpatients treated by teams characterized by high ITW intensity reported almost four times more positive perceptions of Prompt access to care compared to patients treated by low ITW intensity teams (OR = 3.99; CI = 1.89-8.41). High ITW intensity also positively affected patients' perceptions of Quality of patient-professional communication (OR = 2.37; CI = 1.25-4.51), Person-centred response (OR = 2.11; CI = 1.05-4.24], and Continuity

Assessing patients' experiences with communication across the cancer care continuum.

PubMed

Mazor, Kathleen M; Street, Richard L; Sue, Valerie M; Williams, Andrew E; Rabin, Borsika A; Arora, Neeraj K

2016-08-01

To evaluate the relevance, performance and potential usefulness of the Patient Assessment of cancer Communication Experiences (PACE) items. Items focusing on specific communication goals related to exchanging information, fostering healing relationships, responding to emotions, making decisions, enabling self-management, and managing uncertainty were tested via a retrospective, cross-sectional survey of adults who had been diagnosed with cancer. Analyses examined response frequencies, inter-item correlations, and coefficient alpha. A total of 366 adults were included in the analyses. Relatively few selected Does Not Apply, suggesting that items tap relevant communication experiences. Ratings of whether specific communication goals were achieved were strongly correlated with overall ratings of communication, suggesting item content reflects important aspects of communication. Coefficient alpha was ≥.90 for each item set, indicating excellent reliability. Variations in the percentage of respondents selecting the most positive response across items suggest results can identify strengths and weaknesses. The PACE items tap relevant, important aspects of communication during cancer care, and may be useful to cancer care teams desiring detailed feedback. The PACE is a new tool for eliciting patients' perspectives on communication during cancer care. It is freely available online for practitioners, researchers and others. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Research Biopsies: An Integrative Review of the Experiences of Patients With Cancer.

PubMed

Abraham, Elizabeth; Post, Kathryn; Spring, Laura; Malvarosa, Giuliana; Tripp, Elizabeth; Peppercorn, Jeffrey M; Bardia, Aditya; Habin, Karleen

2018-06-01

Research biopsies (RBs) are essential to understanding tumor biology and mechanisms of resistance and to advancing precision medicine. However, RBs have associated risks and may not benefit the patient. The purpose of this integrative review is to summarize and synthesize the current literature on the experience, attitudes, and understanding of patients with cancer related to RBs. Articles from January 2010 to February 2017 were retrieved via a search of MEDLINE®. Articles included reported on the willingness, perceptions, understanding, attitudes, and/or experience of patients with cancer related to RBs. Nine of 216 identified studies were selected. Studies exploring patient willingness to undergo RBs (n = 6) identified RBs as a potential barrier to clinical trial participation. Studies exploring patient understanding and informed consent (n = 3) revealed variable patient knowledge of the risks and benefits of RBs.

The cancer experience map: an approach to including the patient voice in supportive care solutions.

PubMed

Hall, Leslie Kelly; Kunz, Breanne F; Davis, Elizabeth V; Dawson, Rose I; Powers, Ryan S

2015-05-28

The perspective of the patient, also called the "patient voice", is an essential element in materials created for cancer supportive care. Identifying that voice, however, can be a challenge for researchers and developers. A multidisciplinary team at a health information company tasked with addressing this issue created a representational model they call the "cancer experience map". This map, designed as a tool for content developers, offers a window into the complex perspectives inside the cancer experience. Informed by actual patient quotes, the map shows common overall themes for cancer patients, concerns at key treatment points, strategies for patient engagement, and targeted behavioral goals. In this article, the team members share the process by which they created the map as well as its first use as a resource for cancer support videos. The article also addresses the broader policy implications of including the patient voice in supportive cancer content, particularly with regard to mHealth apps.

The taboo of cancer: the experiences of cancer disclosure by Iranian patients, their family members and physicians.

PubMed

Zamanzadeh, Vahid; Rahmani, Azad; Valizadeh, Leila; Ferguson, Caleb; Hassankhani, Hadi; Nikanfar, Ali-Reza; Howard, Fuchsia

2013-02-01

The objective of this study is to describe the experiences of cancer disclosure by Iranian cancer patients, their family members and physicians. Twenty cancer patients, ten family members and eight physicians participated in this study. Data were collected via semi-structured, in-depth interviews and analyzed using qualitative content analysis. Three categories were identified: cancer avoidance, a climate of non-disclosure and mutual concern. The findings demonstrated that cancer is a taboo subject and the word cancer, as well as other indicative terms, was rarely used in daily communication. A climate of non-disclosure predominated because patients were the last to know their diagnosis, they were unaware of their prognosis, and family members and physicians employed strategies to conceal this information. The mutual concern of patients, family members and physicians was the main reason that cancer was not discussed. Cancer is a taboo subject in Iran that is maintained and reinforced primarily because of the mutual concern of patients, family members and physicians. The first step to address this taboo and inform cancer patients of their diagnosis would be to understand and help mitigate the individual, family and social consequences of disclosure. Copyright © 2011 John Wiley & Sons, Ltd.

Defining Priorities to Improve Patient Experience in Non-Muscle Invasive Bladder Cancer.

PubMed

Garg, Tullika; Connors, Jill Nault; Ladd, Ilene G; Bogaczyk, Tyler L; Larson, Sharon L

2018-01-20

Although approximately 75% of bladder cancers are non-muscle invasive (NMIBC) at diagnosis, most research tends to focus on invasive disease (e.g., experiences related to radical cystectomy and urinary diversion). There is a lack of studies on quality of life, and especially qualitative research, in bladder cancer generally. As a result, relatively little is known about the experiences and needs of NMIBC patients. To understand patient experience, define care priorities, and identify targets for care improvement in NMIBC across the cancer continuum. Through focus groups, patients treated for NMIBC (stage experiences including diagnosis, treatment, and survivorship. Transcripts were analyzed using conventional content analysis to identify themes and subthemes. Twenty patients (16 male, 4 female, all white) participated in three focus groups. Five primary themes emerged: access to care, provider characteristics and communication, quality of life, goals of care/influences on decision-making, and role of social support. Patients with NMIBC desired timely access to care and honest and caring provider communication. They described urinary function and emotional quality of life changes resulting from diagnosis and treatment. Avoiding cystectomy and being alive for family were the major decision influencers. In this qualitative study, we identified access to care, provider characteristics and communication, quality of life, values/influences on decision-making, and social support as priority areas to improve patient experience in NMIBC. Care redesign efforts should focus on improving access, enhancing provider communication, reducing side effects, and supporting caregiver roles.

[The Nutritional Care Experience of a Post-Operative Periampullary Cancer Patient With Cachexia].

PubMed

Liou, Yan-Ting; Chiang, Pin-Yi; Shun, Shiow-Ching

2016-04-01

Cachexia is one of the most widely overlooked of the syndromes that are experienced by cancer patients. This syndrome is especially prevalent among patients with gastroenterology tract cancer. Although the National Comprehensive Cancer Network (NCCN) issued palliative-care practice guidelines for cachexia in 2015, guidelines have yet to be issued for the clinical setting. The authors reviewed the literature and applied their clinical experience to create an approach for identifying the degree of cachexia in a post-operative patient with periampullary cancer. This approach assesses the nutritional status, physical status, laboratory results, and gastrointestinal system functions of the patient using the Cachexia Assessment Scale (CAS) and NCCN Practice Guidelines for Cachexia. The patient improved under nursing care with an increase in nutritional intake and physical activity facilitating their process of post-surgical physical recovery. The authors hope that this experience using the combined CAS-NCCN Practice Guidelines will help clinical caregivers better understand how to apply the relevant guidelines in clinical settings. The developed approach may help nurses assess the comprehensive nutrition status of patients and related factors in order to provide interventions that will decrease the progression of cachexia effectively and promote quality of life.

Cancer patients' experiences and evaluations of aromatherapy massage in palliative care.

PubMed

Dunwoody, Lynn; Smyth, Angus; Davidson, Robin

2002-10-01

Many patients suffering from cancer make use of complementary therapies, with aromatherapy being a popular choice. Quantitative studies, using questionnaire data, have shown that aromatherapy may reduce psychological distress and enhance symptom control in cancer patients. However, little is known about the personal meanings patients associate with the therapy. This study explored the patients' experiences of aromatherapy using of a focus group interview. Eight themes emerged from the analysis, six of which have been acknowledged to some extent by previous authors: de-stressing effects of aromatherapy, the counselling role of the aromatherapist, aromatherapy as a reward, patient empowerment, communication through touch, and negative aspects of the service. Two apparently new themes emerged concerned with security of context (where the aromatherapy took place) and preconceived perceptions of the value of aromatherapy as a treatment of cancer patients. The implications of the findings are discussed in relation to the perceived role of counselling, collaborative practice and training in complementary therapies.

Individual Experiences in Four Cancer Patients Following Psilocybin-Assisted Psychotherapy.

PubMed

Malone, Tara C; Mennenga, Sarah E; Guss, Jeffrey; Podrebarac, Samantha K; Owens, Lindsey T; Bossis, Anthony P; Belser, Alexander B; Agin-Liebes, Gabrielle; Bogenschutz, Michael P; Ross, Stephen

2018-01-01

A growing body of evidence shows that existential and spiritual well-being in cancer patients is associated with better medical outcomes, improved quality of life, and serves as a buffer against depression, hopelessness, and desire for hastened death. Historical and recent research suggests a role for psilocybin-assisted psychotherapy in treating cancer-related anxiety and depression. A double-blind controlled trial was performed, where 29 patients with cancer-related anxiety and depression were randomly assigned to treatment with single-dose psilocybin (0.3 mg/kg) or niacin in conjunction with psychotherapy. Previously published results of this trial demonstrated that, in conjunction with psychotherapy, moderate-dose psilocybin produced rapid, robust, and enduring anxiolytic, and anti-depressant effects. Here, we illustrate unique clinical courses described by four participants using quantitative measures of acute and persisting effects of psilocybin, anxiety, depression, quality of life, and spiritual well-being, as well as qualitative interviews, written narratives, and clinician notes. Although the content of each psilocybin-assisted experience was unique to each participant, several thematic similarities and differences across the various sessions stood out. These four participants' personal narratives extended beyond the cancer diagnosis itself, frequently revolving around themes of self-compassion and love, acceptance of death, and memories of past trauma, though the specific details or narrative content differ substantially. The results presented here demonstrate the personalized nature of the subjective experiences elicited through treatment with psilocybin, particularly with respect to the spiritual and/or psychological needs of each patient.

Radical cystectomy for bladder cancer: a qualitative study of patient experiences and implications for practice.

PubMed

Fitch, Margaret I; Miller, Debbie; Sharir, Sharon; McAndrew, Alison

2010-01-01

Patients being treated for bladder cancer share issues in common with other cancer patients, but also experience issues that are unique to their surgical treatment. This study used a descriptive qualitative approach to explore the experiences of patients who had undergone radical cystectomy for bladder cancer Twenty-two participants were interviewed in-depth on one occasion and were invited to attend a focus group session following the analysis of the interview transcripts. Participants described the shock of their diagnosis, their lack of information about bladder cancer, the importance of clear communication with care providers, and the types of adjustments they had to make following surgery. Specifically, changes in bodily function, body image, sexual relationships, and intimacy presented challenges for these participants. Although there was a sense of acceptance about the treatment-related events, there were still significant adjustments required by individuals following their surgery. Information, open communication, and support from family and friends were seen as important factors in helping patients adjust after surgery. Patients require clear, concise and consistent information about their cancer, treatment options, and course of care. Nurses caring for patients following surgery for bladder cancer need to understand the unique needs of these patients.

Adolescent cancer patients' perspectives on their educational experiences: Ten case studies

NASA Astrophysics Data System (ADS)

Searle, Nancy Smith

The goal of this study was to explore the educational experiences of adolescent cancer patients in treatment for cancer and enrolled in hospital, homebound, or community schools. The incidence of students who have or had cancer is becoming more prevalent in schools today because of increases in the population, the incidence rate of cancer, and the survival rate of cancer. The number of students surviving cancer has increased over 41% in the past ten years and underscores the importance of assuring an excellent education to children and adolescents with cancer so that they may enjoy a good quality of life as long-term survivors. This study explored the educational experiences of students who were adolescent cancer patients and identified educational and psychosocial issues important to their success. The goal of this research effort was to provide educators and medical staff with a deeper understanding of the unique psychoeducational needs of this population and to provide a foundation for developing ideas for improving the educational programs and support available to students who continue their middle and high school education while undergoing treatment for cancer. Participants included ten cancer patient whose mean age at onset of disease was 13.8 +/- 1.7 years, and mean age at interview was 15.2 +/- 1.8 years. The researcher conducted individual, in-depth, ethnographic interviews of students, and one parent and one teacher of each student. Case studies of the students included extensive dialogue of each of the contributing participants. An analysis of the case studies was conducted by coding emerging themes so that topics could be fully explored and compared between individuals, groups of individuals, and educational settings to identify the meaning that these students placed on the educational and psychosocial issues that they voiced as important. Advantages and disadvantages of each educational situation, homebound, hospital school, and community school, were

Patient experiences and outcomes following facial skin cancer surgery: A qualitative study.

PubMed

Lee, Erica H; Klassen, Anne F; Lawson, Jessica L; Cano, Stefan J; Scott, Amie M; Pusic, Andrea L

2016-08-01

Early melanoma and non-melanoma skin cancer of the facial area are primarily treated with surgery. Little is known about the outcomes of treatment for facial skin cancer patients. The objective of the study was to identify concerns about aesthetics, procedures and health from the patients' perspective after facial skin surgery. Semi-structured in-depth interviews were conducted with 15 participants. Line-by-line coding was used to establish categories and develop themes. We identified five major themes on the impact of skin cancer surgery: appearance-related concerns; psychological (e.g., fear of new cancers or recurrence); social (e.g. impact on social activities and interaction); physical (e.g. pain and swelling) concerns and satisfaction with the experience of care (e.g., satisfaction with surgeon). The priority of participants was the removal of the facial skin cancer, as this reduced their overall worry. The aesthetic outcome was secondary but important, as it had important implications on the participants' social and psychological functioning. The participants' experience with the care provided by the surgeon and staff also contributed to their satisfaction with their treatment. This conceptual framework provides the basis for the development of a new patient-reported outcome instrument. © 2015 The Australasian College of Dermatologists.

Experiences of aromatherapy massage among adult female cancer patients: A qualitative study.

PubMed

Ho, Simone S M; Kwong, Alice N L; Wan, Karen W S; Ho, Rosita M L; Chow, Ka Ming

2017-12-01

To explore the experiences towards aromatherapy massage use, and to examine the perceived benefits and adverse effects of aromatherapy massage among adult female cancer patients. A qualitative research design was used. Fifteen women with cancer were recruited for semi-structured interviews. Sample recruitment was undertaken through cancer self-help groups and referrals of a private aromatherapy clinic by convenience sampling. The interview data were analysed by thematic analysis. All participants had a positive experience towards aromatherapy massage. The perceived benefits of aromatherapy massage included physical and psychological dimensions: overall comfort, relaxation, reduced pain, muscular tension, lymphoedema and numbness, improved sleep, energy level, appetite and mood. Interestingly, a few participants reported that aromatherapy massage helped to enhance self-acceptance and coping with their altered torso. No adverse effects were reported. The findings focused on four main themes that emerged: (i) an immediate effect that brings all-round comfort and reconnection to daily life; (ii) a pleasurable moment to forget the disease with aroma as a booster; (iii) a pampering experience of being cared for with a sense of dignity preserved; and (iv) communicating with the failing body. This study contributed by providing a better understanding in aromatherapy massage from female cancer patients' perspective which adds to the existing body of knowledge. The implications for nursing practice, education and future research were suggested. Aromatherapy massage seems to have both physical and psychological benefits for women with cancer. The findings elucidated a wide range of benefits that are perceived in such complex intervention, and the contextual factors that may influence these perceived benefits. This will inform future nurse-led quantitative research in the clinical setting. The study highlights the importance of touch towards a caring relationship and the

Improving cancer patient care: development of a generic cancer consumer quality index questionnaire for cancer patients.

PubMed

Booij, Judith C; Zegers, Marieke; Evers, Pauline M P J; Hendriks, Michelle; Delnoij, Diana M J; Rademakers, Jany J D J M

2013-04-23

To develop a Consumer Quality Index (CQI) Cancer Care questionnaire for measuring experiences with hospital care of patients with different types of cancer. We derived quality aspects from focus group discussions, existing questionnaires and literature. We developed an experience questionnaire and sent it to 1,498 Dutch cancer patients. Another questionnaire measuring the importance of the quality aspects was sent to 600 cancer patients. Data were psychometrically analysed. The response to the experience questionnaire was 50 percent. Psychometric analysis revealed 12 reliable scales. Patients rated rapid and adequate referral, rapid start of the treatment after diagnosis, enough information and confidence in the healthcare professionals as most important themes. Hospitals received high scores for skills and cooperation of healthcare professionals and a patient-centered approach by doctors; and low scores for psychosocial guidance and information at completion of the treatment. The CQI Cancer Care questionnaire is a valuable tool for the evaluation of the quality of cancer care from the patient's perspective. Large scale implementation is necessary to determine the discriminatory powers of the questionnaire and may enable healthcare providers to improve the quality of cancer care. Preliminary results indicate that hospitals could improve their psychosocial guidance and information provision.

Information needs and experiences: an audit of UK cancer patients.

PubMed

Cox, Anna; Jenkins, Valerie; Catt, Susan; Langridge, Carolyn; Fallowfield, Lesley

2006-09-01

As part of a multi-centred UK study evaluating multidisciplinary team communication, the information needs, decision making preferences and information experiences of 394 cancer patients were audited. A majority of patients (342/394, 87%) wanted all possible information, both good and bad news. Assuming that all clinicians had equal skill, the majority of patients (350/394, 89%) expressed no preference for the sex of their doctor. The largest proportion of patients (153/394, 39%) wanted to share responsibility for decision making, preference was significantly influenced by age (chi2=17.42, df=4 P=0.002) with older patients more likely to prefer the doctor to make the decisions. A majority of patients reported receiving information regarding their initial tests (313/314, 100%), diagnosis (382/382, 100%), surgery (374/375, 100%) and prognosis (308/355, 87%), fewer recalled discussions concerning clinical trials (119/280, 43%), family history (90/320, 28%) or psychosocial issues, notably sexual well-being (116/314, 37%). Cancer patients want to be fully informed and share decision making responsibility, but do not report receiving sufficient information in all areas. Multidisciplinary cancer teams need to ensure that where appropriate, someone provides patients with information about clinical trials, familial risk and psychosocial issues. Regular audits highlight gaps and omissions in the information given to patients.

"It's not if I get cancer, it's when I get cancer": BRCA-positive patients' (un)certain health experiences regarding hereditary breast and ovarian cancer risk.

PubMed

Dean, Marleah

2016-08-01

Women with a harmful mutation in the BReast CAncer (BRCA) gene are at significantly increased risk of developing hereditary breast and ovarian cancer (HBOC) during their lifetime, compared to those without. Such patients-with a genetic predisposition to develop cancer but who have not yet been diagnosed with cancer-live in a constant state of uncertainty and wonder not if they might get cancer but when. Framed by uncertainty management theory, the purpose of this study was to explore BRCA-positive patients' health experiences after testing positive for the BRCA genetic mutation, specifically identifying their sources of uncertainty. Thirty-four, qualitative interviews were conducted with female patients. Participants responded to online research postings on the non-profit organization Facing Our Risk of Cancer Empowered's (FORCE) message board and social media pages as well as HBOC-specific Facebook groups. The interview data were coded using the constant comparison method. Two major themes representing BRCA-positive patients' sources of uncertainty regarding their genetic predisposition and health experiences emerged from the data. Medical uncertainty included the following three subthemes: the unknown future, medical appointments, and personal cancer scares. Familial uncertainty encompassed the subthemes traumatic family cancer memories and motherhood. Overall, the study supports and extends existing research on uncertainty-revealing uncertainty is inherent in BRCA-positive patients' health experiences-and offers new insight regarding uncertainty management and HBOC risk. Copyright © 2016 Elsevier Ltd. All rights reserved.

Treatment decision making experiences of migrant cancer patients and their families in Australia.

PubMed

Shaw, Joanne; Zou, Xian; Butow, Phyllis

2015-06-01

To explore treatment decision-making experiences of Australian migrants with cancer from Arabic, Chinese, or Greek backgrounds and their relatives. 73 patients and 18 caregivers from cancer support groups and oncology clinics participated in either a focus group (n=14) or semi-structured interview (n=21) conducted in the participant's own language. Participant treatment decision-making preferences were discussed as part of patients' overall treatment experience and a thematic analysis conducted. Four main themes emerged from the data: (1) perceived role of the patient in decision-making; (2) access to information and the impact of language; (3) cultural influences (4) family involvement. The majority of participants experienced passive involvement during treatment consultations, but expressed a desire for greater involvement. Language rather than culture was a greater obstacle to active participation. Difficulty communicating effectively in English was the most significant barrier to participation in treatment decisions. To overcome language challenges, participants actively sought information from alternative sources. This study provides new insights into the influence of language and culture on the treatment decision-making experiences of migrants with cancer and their families within the Australian cancer care system. To reduce health disparities doctors need to address language difficulties and be aware of cultural differences. Copyright © 2015. Published by Elsevier Ireland Ltd.

Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients.

PubMed

Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee

2014-10-01

Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis. Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up. In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace. Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being. Copyright © 2014 John Wiley & Sons, Ltd.

Adjustment to cancer: exploring patients' experiences of participating in a psychodramatic group intervention.

PubMed

Menichetti, J; Giusti, L; Fossati, I; Vegni, E

2016-09-01

The main purpose of the present study was to understand the subjective experience of patients adjusting to cancer by focusing on how that experience might be affected by participating in a psychodramatic group intervention. In-depth interviews using an interpretative-phenomenological approach were conducted with eight cancer patients involved in a psychodrama group. Four key themes were identified: (1) outside and inside relationships; (2) identities: nurturing other selves; (3) a feelings' gym: performing the internal world; and (4) many ends: mourning death and dying. Participation in cancer group using a psychodramatic approach provided positive results. In detail, the group setting: (1) favoured relationships in which it was possible to freely express oneself and (2) empowered patients in their feelings of being able to give and receive help; the psychodramatic approach: (1) supported the physical mobilisation of sense of agency and (2) permitted to deal with the grieving process. Cancer healthcare pathways would benefit from psychotherapeutic programmes using a similar approach, since psychodrama by actively involving body seems to works on areas that are often underwhelmed by other approaches, such as (i.e., physical mobilisation, body engagement, grieving adjustment). Psychodrama supports patients to achieve insights into their own possibilities to actively participate in their own life situations despite having cancer and undergoing treatment for it. © 2015 John Wiley & Sons Ltd.

Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer.

PubMed

Taylor, Rachel M; Fern, Lorna A; Solanki, Anita; Hooker, Louise; Carluccio, Anna; Pye, Julia; Jeans, David; Frere-Smith, Tom; Gibson, Faith; Barber, Julie; Raine, Rosalind; Stark, Dan; Feltbower, Richard; Pearce, Susie; Whelan, Jeremy S

2015-07-28

Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end-points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13-24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention. A three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14-25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14-24 years. Stage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people's cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments. Collaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young

Improving cancer patient care: development of a generic cancer consumer quality index questionnaire for cancer patients

PubMed Central

2013-01-01

Background To develop a Consumer Quality Index (CQI) Cancer Care questionnaire for measuring experiences with hospital care of patients with different types of cancer. Methods We derived quality aspects from focus group discussions, existing questionnaires and literature. We developed an experience questionnaire and sent it to 1,498 Dutch cancer patients. Another questionnaire measuring the importance of the quality aspects was sent to 600 cancer patients. Data were psychometrically analysed. Results The response to the experience questionnaire was 50 percent. Psychometric analysis revealed 12 reliable scales. Patients rated rapid and adequate referral, rapid start of the treatment after diagnosis, enough information and confidence in the healthcare professionals as most important themes. Hospitals received high scores for skills and cooperation of healthcare professionals and a patient-centered approach by doctors; and low scores for psychosocial guidance and information at completion of the treatment. Conclusions The CQI Cancer Care questionnaire is a valuable tool for the evaluation of the quality of cancer care from the patient’s perspective. Large scale implementation is necessary to determine the discriminatory powers of the questionnaire and may enable healthcare providers to improve the quality of cancer care. Preliminary results indicate that hospitals could improve their psychosocial guidance and information provision. PMID:23617741

The Experience of Caregivers Living with Cancer Patients: A Systematic Review and Meta-Synthesis

PubMed Central

LeSeure, Peeranuch; Chongkham-ang, Supaporn

2015-01-01

The objectives of this meta-synthesis were to: (1) explore the experience of caregivers who were caring for cancer patients, including their perceptions and responses to the situation; and (2) describe the context and the phenomena relevant to the experience. Five databases were used: CINAHL, MEDLINE, Academic Search, Science Direct, and a Thai database known as the Thai Library Integrated System (ThaiLIS). Three sets of the context of the experience and the phenomena relevant to the experience were described. The contexts were (1) having a hard time dealing with emotional devastation; (2) knowing that the caregiving job was laborious; and (3) knowing that I was not alone. The phenomenon showed the progress of the caregivers’ thoughts and actions. A general phenomenon of the experience—balancing my emotion—applied to most of the caregivers; whereas, more specific phenomenon—keeping life as normal as possible and lifting life above the illness—were experienced by a lesser number of the caregivers. This review added a more thorough explanation of the issues involved in caregiving for cancer patients. A more comprehensive description of the experience of caregiving was described. The findings of this review can be used to guide clinical practice and policy formation in cancer patient care. PMID:26610573

Effect of a Website That Presents Patients' Experiences on Self-Efficacy and Patient Competence of Colorectal Cancer Patients: Web-Based Randomized Controlled Trial.

PubMed

Giesler, Jürgen M; Keller, Bettina; Repke, Tim; Leonhart, Rainer; Weis, Joachim; Muckelbauer, Rebecca; Rieckmann, Nina; Müller-Nordhorn, Jacqueline; Lucius-Hoene, Gabriele; Holmberg, Christine

2017-10-13

Patients often seek other patients' experiences with the disease. The Internet provides a wide range of opportunities to share and learn about other people's health and illness experiences via blogs or patient-initiated online discussion groups. There also exists a range of medical information devices that include experiential patient information. However, there are serious concerns about the use of such experiential information because narratives of others may be powerful and pervasive tools that may hinder informed decision making. The international research network DIPEx (Database of Individual Patients' Experiences) aims to provide scientifically based online information on people's experiences with health and illness to fulfill patients' needs for experiential information, while ensuring that the presented information includes a wide variety of possible experiences. The aim is to evaluate the colorectal cancer module of the German DIPEx website krankheitserfahrungen.de with regard to self-efficacy for coping with cancer and patient competence. In 2015, a Web-based randomized controlled trial was conducted using a two-group between-subjects design and repeated measures. The study sample consisted of individuals who had been diagnosed with colorectal cancer within the past 3 years or who had metastasis or recurrent disease. Outcome measures included self-efficacy for coping with cancer and patient competence. Participants were randomly assigned to either an intervention group that had immediate access to the colorectal cancer module for 2 weeks or to a waiting list control group. Outcome criteria were measured at baseline before randomization and at 2 weeks and 6 weeks. The study randomized 212 persons. On average, participants were 54 (SD 11.1) years old, 58.8% (124/211) were female, and 73.6% (156/212) had read or heard stories of other patients online before entering the study, thus excluding any influence of the colorectal cancer module on

The Personal Experience of LGBT Patients with Cancer.

PubMed

Carr, Ellen

2018-02-01

To capture the perspectives from lesbian, gay, bisexual and transgender (LGBT) individuals diagnosed treated for cancer. Four LGBT individuals diagnosed and treated for cancer. Care for the LGBT patient is based on sensitivity and awareness to LGBT issues and concerns. Nurses caring for the LGBT cancer patient provide that care in a context of awareness and sensitivity. The nurse's approach to LGBT patient and family care is based on open communication, establishing trusting relationships and honoring the patient's preferences. Excellent oncology nursing care for LGBT patients is excellent oncology nursing care. Copyright © 2017 Elsevier Inc. All rights reserved.

Patient Navigation to Improve Cancer Screening in Underserved Populations: Reported Experiences, Opportunities, and Challenges.

PubMed

Neal, Chrishanae D; Weaver, Davis T; Raphel, Tiana J; Lietz, Anna P; Flores, Efren J; Percac-Lima, Sanja; Knudsen, Amy B; Pandharipande, Pari V

2018-04-20

Our goal is to define patient navigation for an imaging audience, present a focused selection of published experiences with navigation programs for breast and colorectal cancer screening, and expose principal barriers to the success of such programs. Despite numerous advances in the early detection of cancers, many patients still present with advanced disease. A disproportionate number are low-income minority patients who experience worse health outcomes than their white or more financially stable counterparts. Patient navigation, which aims to assist the medically underserved by overcoming specific barriers to care, may represent one solution to narrowing disparities. Related research suggests that in general, patient navigation programs that have addressed breast or colorectal cancer screening have been successful in improving screening rates and timeliness of follow-up care. However, although beneficial, navigation is expensive and may present an unmanageable financial burden for many health care centers. To overcome this challenge, navigation efforts will likely need to target those patients that are most likely to benefit. Further research to identify such patients will be critically important for improving the sustainability of navigation programs, and, in turn, for realizing the benefits of such programs in reducing cancer disparities. Copyright © 2018. Published by Elsevier Inc.

Caring for patients with cancer in non-specialist wards: the nurse experience.

PubMed

Mohan, S; Wilkes, L M; Ogunsiji, O; Walker, A

2005-07-01

This study aims to describe the experiences of nurses caring for cancer patients in non-specialist wards. The study was conducted in a large (420 beds) and small (32 beds) hospital in an area health service with urban and rural populations in the west of Sydney. A qualitative descriptive approach was utilized to collect data from the nurses. Data were collected using a survey and in-depth interviews of nurses working in non-specialist cancer wards. Transcribed data were managed with Nudist Vivo software and analysed for common themes using process of constant comparison and contrast. Twenty-five surveys were returned and five nurses volunteered to be interviewed. The six major themes that emerged from analysis of data were: emotional nature of care, lack of time, lack of knowledge of cancer treatment, family support, environment not conducive to proper care and dealing with patient's non-acceptance of cancer diagnosis. The nurses in this study wished to provide quality supportive care for cancer patients and their families but the inconducive environment and inadequate relevant training hindered the nurses' efforts. This then presents further need of relevant training for nurses in cancer care and time management, to meet up with these challenges.

Head and neck cancer patients' experiences of percutaneous endoscopic gastrostomy feeding: a Q-methodology study.

PubMed

Merrick, S; Farrell, D

2012-07-01

Head and neck cancer patients are at high risk of malnutrition and its complications and therefore often undergo non-oral nasogastric or percutaneous endoscopic gastrostomy (PEG) nutrition support. However, there is little evidence that either approach is effective in this group. While one possible explanation for these findings relates to the relationship between artificial tube feeding and poor quality of life, there is little research that examines the patient's subjective experience of nutrition support. This study investigated the experiences of PEG tube feeding in head and neck cancer patients undergoing radical treatment. Conventional Q-methodology was used with 15 head and neck cancer patients, who rank-ordered 36 statements according to the extent to which these reflected their experiences of PEG tube feeding. The sorted statements were factor-analysed case-wise to provide clusters of similar experiences. Three perspectives emerged. Factor 1, labelled 'Constructive cognitive appraisal', focused around positive adaptation to, and acceptance of, PEG feeding. Factor 2, labelled 'Cognitive-affective dissonance', reflected ambivalence between cognitive acceptance and affective rejection of the PEG tube. Factor 3, labelled 'Emotion-focused appraisal', was characterised by tube-focused anxiety and fear. The findings broadly confirm Levanthal et al.'s Self-Regulatory Model of coping and support the need for genuine and individualised patient-centred nutritional care. © 2012 Blackwell Publishing Ltd.

Exploring experiences of cancer care in Wales: a thematic analysis of free-text responses to the 2013 Wales Cancer Patient Experience Survey (WCPES).

PubMed

Bracher, Michael; Corner, Dame Jessica; Wagland, Richard

2016-09-02

To provide the first systematic analysis of a national (Wales) sample of free-text comments from patients with cancer, to determine emerging themes and insights regarding experiences of cancer care in Wales. Thematic analysis of free-text data from a population-based survey. Adult patients with a confirmed cancer diagnosis treated within a 3-month period during 2012 in the 7 health boards and 1 trust providing cancer care in Wales. Free-text categorised by theme, coded as positive or negative, with ratios. Overarching themes are identified incorporating comment categories. 4672 respondents (of n=7352 survey respondents) provided free-text comments. Data were coded using a multistage approach: (1) coding of comments into general categories (eg, nursing, surgery, etc), (2) coding of subcategories within main categories (eg, nursing care, nursing communication, etc), (3) cross-sectional analysis to identify themes cutting across categories, (4) mapping of categories/subcategories to corresponding closed questions in the Wales Cancer Patient Experience Survey (WCPES) data for comparison. Most free-text respondents (82%, n 3818) provided positive comments about their cancer care, with 49% (n=2313) giving a negative comment (ratio 0.6:1, negative-to-positive). 3172 respondents (67.9% of free-text respondents) provided a comment mapping to 1 of 4 overarching themes: communication (n=1673, 35.8% free-text respondents, a ratio of 1.0:1); waiting during the treatment and/or post-treatment phase (n=923, 19.8%, ratio 1.5:1); staffing and resource levels (n=671, 14.4% ratio 5.3:1); speed and quality of diagnostic care (n=374, 8.0%, ratio 1.5:1). Within these areas, constituent subthemes are discussed. This study presents specific areas of concern for patients with cancer, and reveals a number of themes present across the cancer journey. While the majority of comments were positive, analysis reveals concerns shared by significant numbers of respondents. Timely communication can

75 FR 9913 - Request for Measures of Patient Experiences of Cancer Care

Federal Register 2010, 2011, 2012, 2013, 2014

2010-03-04

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Agency for Healthcare Research and Quality Request for Measures of Patient Experiences of Cancer Care AGENCY: Agency for Healthcare Research and Quality, HHS. ACTION: Notice of request. SUMMARY: The Agency for Healthcare Research and Quality (AHRQ), in...

Taste alteration in breast cancer patients treated with taxane chemotherapy: experience, effect, and coping strategies.

PubMed

Speck, Rebecca M; DeMichele, Angela; Farrar, John T; Hennessy, Sean; Mao, Jun J; Stineman, Margaret G; Barg, Frances K

2013-02-01

This study examined the experience and coping strategies for taste alteration in female breast cancer patients treated with docetaxel or paclitaxel. A purposive sample of 25 patients currently receiving docetaxel or paclitaxel or within 6 months of having completed treatment was recruited. Semi-structured interviews and patient-level data were utilized for this exploratory descriptive study. Interview data were analyzed with the constant comparative method; patient-level data were abstracted from the electronic medical record. Of all side effects reported from taxanes, the most common was taste alteration (8 of 10 docetaxel patients, 3 of 15 paclitaxel patients). Women that experience taste alteration chose not to eat as much, ate on an irregular schedule, and/or lost interest in preparing meals for themselves and/or their family. Women adopted a variety of new behaviors to deal with the taste alteration and its effects, including trying new recipes, eating strongly flavored foods, honoring specific food cravings, eating candy before meals, cutting food with lemon, drinking sweetened drinks, using plastic eating utensils, drinking from a straw, brushing their teeth and tongue before meals, and using baking soda and salt wash or antibacterial mouthwash. Taste alteration affects breast cancer patients' lives, and they develop management strategies to deal with the effect. While some self-management strategies can be seen as positively adaptive, the potential for increased caloric consumption and poor eating behaviors associated with some coping strategies may be a cause for concern given the observation of weight gain during breast cancer treatment and association of obesity with poor treatment outcomes in breast cancer patients. Further studies are warranted to determine the overall burden of this symptom and measurement of cancer and non-cancer-related consequences of these behavioral adaptations.

Experiences of gynecological cancer patients receiving care from specialist nurses: a qualitative systematic review.

PubMed

Cook, Olivia; McIntyre, Meredith; Recoche, Katrina; Lee, Susan

2017-08-01

The care needs of women with gynecological cancer are complex and change over the course of their cancer journey. Specialist nurses are well positioned to play a role in meeting the needs of women with gynecological cancer although their role and scope of practice have not been well defined. As patients are a key stakeholder, understanding their experience of care is an important step in better defining the role and scope of practice of specialist nurses in gynecological oncology in Australia and New Zealand. This review sought to consider gynecological cancer patients' experiences of specialist nursing care. Exploring the patient's experience of care by a specialist nurse is one step in the process of better defining the role and scope of practice of specialist gynecological-oncology nurses in Australia and New Zealand. This review included studies with a focus on women with gynecological cancer who had been cared for by a specialist nurse. Studies of women with gynecological cancer at any point on the continuum of care from pre-diagnosis to survivorship or end of life, including those with a recurrence of the disease, were included, with no limit to the duration of care received for inclusion in the review. Studies that explored how women with gynecological cancer experience the care and interventions of specialist nurses were included. Qualitative studies including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research were considered for review. This review also considered the qualitative components of mixed method studies. Research conducted in any country was considered for inclusion in this review providing that the study was reported in English. Studies conducted in any setting including, but not limited to, acute hospitals, outpatient/ambulatory clinics, chemotherapy or radiotherapy units, support groups, palliative care units or the patient's home were included. A three-step search strategy

Survivorship Care Experiences and Information and Support Needs of Oral and Oropharyngeal Cancer Patients

PubMed Central

Manne, Sharon; Hudson, Shawna V.; Baredes, Soly; Stroup, Antoinette; Virtue, Shannon Myers; Paddock, Lisa; Kalyoussef, Evelyne

2015-01-01

Background There is little research documenting the post-treatment experiences and needs of oral/oropharyngeal cancer survivors. Methods In this cross-sectional study, 92 patients diagnosed with oral/oropharyngeal cancer diagnosed between 2 and 5 years prior completed a survey about oral cancer information and support needs. Results About half retrospectively reported that they did not receive a written treatment summary. The desire for more oral cancer information was common: One-third or more desired more information about long-term effects, recommended follow-up, and symptoms that should prompt contacting a doctor. Support needs were less common: Only a lack of energy was rated as a significant support need. Patients who had a recurrence, did not drink alcohol, and had a greater recurrence fear desired more information. Smokers and more distressed patients reported more support needs. Conclusions Survivors reported the desire for more oral cancer information. A desire for assistance was less common. PMID:26788714

Communication difficulties and the experience of loneliness in patients with cancer dealing with fertility issues: a qualitative study.

PubMed

Goossens, Joline; Delbaere, Ilse; Beeckman, Dimitri; Verhaeghe, Sofie; Van Hecke, Ann

2015-01-01

To explore communication difficulties and the experience of loneliness among patients with cancer dealing with fertility issues. Qualitative study based on grounded theory principles. One university hospital and two general hospitals in Flanders, Belgium. 21 female and 7 male patients with cancer with potential fertility problems as a result of treatment. Grounded theory approach using the constant comparison method; data collection (semistructured face-to-face interviews) and analysis occurred simultaneously. Loneliness was a central theme in the experience of potential fertility loss among patients with cancer. Feelings of loneliness resulted from communication difficulties between the patient and members of his or her social environment or healthcare professionals because of several underlying processes and influencing factors. Loneliness was a strong and common feeling among patients with cancer. Patients, members of their social environment, and healthcare professionals experienced difficulties in communicating about fertility in the context of cancer, leading to patients' feelings of loneliness. Healthcare professionals must be attentive to signs indicating loneliness regarding fertility concerns, and they should provide adequate information and appropriate guidance to support patients. Professionals need further training to improve knowledge and skills.

Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.

PubMed

Busolo, David; Woodgate, Roberta

2015-01-01

The objective of this review is to synthesize the best available evidence on palliative care experiences of adult cancer patients from ethnocultural groups.More specifically, this systematic review seeks to answer the following questions:1. What are the palliative care experiences of adult cancer patients from diverse ethnocultural groups?2. What meanings do adult patients with cancer from diverse ethnocultural groups assign to their experiences with palliative care? Globally, over 20.4 million people need palliative care services annually. The majority of these people (19 million) are adults, with 34% of them being patients diagnosed with cancer. With the current increase in the aging population, especially in developed countries, the number of adults requiring palliative care is expected to rise. Furthermore, how palliative care is offered and received continues to be shaped by culture and ethnicity. Likewise, culture and ethnicity influence how palliative care patients experience diseases like cancer, and seek and utilize palliative care services. Also, healthcare providers sometimes find it challenging to address the palliative care needs of patients from different ethnocultural groups. Sometimes these challenges are believed to be due to cultural incompetence of the care provider. When palliative care patients and their providers differ in their perception of care needs and how to address them, negative palliative care experiences are likely to ensue. Therefore, as the demand for palliative care increases, and ethnocultural factors continue to affect palliation, it is important to gain a better understanding of palliative care experiences of patients from different ethnocultural groups.The terms culture and ethnicity have been defined and used differently in literature which sometimes lead to confusion. Ethnicity has been defined as distinctive shared origins or social backgrounds and traditions of a group of people that are maintained between generations and

A Thematic Analysis of the Self-Directed Learning Experiences of 13 Breast Cancer Patients

ERIC Educational Resources Information Center

Rager, Kathleen

2004-01-01

Although self-directed learning is a common response for many of the 183000 American women who are diagnosed with breast cancer each year, very little is known about the nature of the experience for them. Four themes emerged from interviews with 13 breast cancer patients describing their self-education efforts in regard to their disease. A…

Patient experience and attitudes toward addressing the cost of breast cancer care.

PubMed

Irwin, Blair; Kimmick, Gretchen; Altomare, Ivy; Marcom, P Kelly; Houck, Kevin; Zafar, S Yousuf; Peppercorn, Jeffrey

2014-11-01

The American Society of Clinical Oncology views patient-physician discussion of costs as a component of high-quality care. Few data exist on patients' views regarding how cost should be addressed in the clinic. We distributed a self-administered, anonymous, paper survey to consecutive patients with breast cancer presenting for a routine visit within 5 years of diagnosis at an academic cancer center. Survey questions addressed experience and preferences concerning discussions of cost and views on cost control. Results are primarily descriptive, with comparison among participants on the basis of disease stage, using chi-square and Fisher's exact tests. All p values are two-sided. We surveyed 134 participants (response rate 86%). Median age was 61 years, and 28% had stage IV disease. Although 44% of participants reported at least a moderate level of financial distress, only 14% discussed costs with their doctor; 94% agreed doctors should talk to patients about costs of care. Regarding the impact of costs on decision making, 53% felt doctors should consider direct costs to the patient, but only 38% felt doctors should consider costs to society. Moreover, 88% reported concern about costs of care, but there was no consensus on how to control costs. Most breast cancer patients want to discuss costs of care, but there is little consensus on the desired content or goal of these discussions. Further research is needed to define the role of cost discussions at the bedside and how they will contribute to the goal of high-quality and sustainable cancer care. ©AlphaMed Press.

A national online forum on ethnic differences in cancer pain experience.

PubMed

Im, Eun-Ok; Lee, Seung Hee; Liu, Yi; Lim, Hyun-Ju; Guevara, Enrique; Chee, Wonshik

2009-01-01

Cultural values and beliefs related to cancer and pain have been used to explain ethnic differences in cancer pain experience. Yet, very little is known about similarities and differences in cancer pain experience among different ethnic groups. The objective of this study was to explore similarities and differences in cancer pain experience among four major ethnic groups in the United States. A feminist approach by Hall and Stevens was used. This was a cross-sectional qualitative study among 22 White, 15 Hispanic, 11 African American, and 27 Asian patients with cancer recruited through both Internet and community settings. Four ethnic-specific online forums were conducted for 6 months. Nine topics related to cancer pain experience were used to guide the online forums. The collected data were analyzed using thematic analysis involving line-by-line coding, categorization, and thematic extraction. All participants across ethnic groups reported "communication breakdowns" with their healthcare providers and experienced "changes in perspectives." All of them reported that their cancer pain experience was "gendered experience." White patients focused on how to control their pain and treatment selection process, whereas ethnic minority patients tried to control pain by minimizing and normalizing it. White patients sought out diverse strategies of pain management; ethnic minority patients tried to maintain normal lives and use natural modalities for pain management. Finally, the cancer pain experience of White patients was highly individualistic and independent, whereas that of ethnic minority patients was family oriented. These findings suggest that nurses need to use culturally competent approaches to cancer pain management for different ethnic groups. Also, the findings suggest further in-depth cultural studies on the pain experience of multiethnic groups of patients with cancer.

Exploring the views and experiences of HIV positive patients treated for cancer: a systematic review of the literature.

PubMed

Hainsworth, Emma G; Shahmanesh, Maryam; Stevenson, Fiona

2018-05-01

A systematic review of the literature was conducted to find out what is known about patients' experiences of a dual diagnosis of HIV and cancer. We systematically searched the following databases; MEDLINE (Ovid Version); CINAHL Plus; PsycINFO and EMBASE from inception to June 2016 for studies that included patients with a dual diagnosis of cancer and HIV and focused on patient experiences. Studies with a focus on one illness rather than a dual diagnosis, those that focused on treatment strategies and medical management, epidemiology and pathology studies and comparison studies were all excluded. The full text of the included studies were reviewed. Information on location, sample size, study design and a narrative summary of findings were extracted using a standardised format. Studies were combined thematically. 1777 records were screened by title and abstract using the selection criteria described in the methods. Eight records were reviewed in depth in full text and seven selected as eligible. The selected studies suggest that a dual diagnosis of HIV and cancer has a powerful impact on individuals' behaviour. The experience of stigma was a consistent factor in all patient accounts and the strategy of selective disclosure to access support reveals how patient agency can interplay with stigma. This is an area largely unexplored in the published literature; further research into patients' experiences of a dual diagnosis of HIV and cancer will provide relevant knowledge in order to tailor and improve services.

Real-world experience with colorectal cancer chemotherapies: patient web forum analysis.

PubMed

Beusterien, Kathleen; Tsay, Sarah; Gholizadeh, Shadi; Su, Yun

2013-01-01

In contrast to clinical trials, patient web forums provide a unique opportunity for patients to spontaneously post their experiences and thoughts about diseases and treatments. This study explored the impact of colorectal cancer (CRC) treatments in these forums. This was a systematic cross-sectional qualitative analysis. Two active CRC web forums were identified based on four criteria: active for ≥five years, >12,000 total posts, >20 individuals currently browsing, and ≥10 new posts/day. All relevant threads (set of messages focusing on a topic) relating to treatment posted in July and December 2010 and February to March 2011 were reviewed and coded using MaxQDA software. A content analysis was performed identifying key themes. The threads included 1522 posts by 264 individuals. Demographics were identified for 83% of the posters. Of these, 83% were CRC patients and 17% were family members; 76% were females, and the mean patient age was 49 years. The majority had advanced cancer (44% stage IV or metastatic, 40% stage III). The most common themes were side effects (62.3% of posts), treatment response (13%), and impact on personal, social, and work lives, and emotional distress (23.9%). The posters came to the online forums to have an emotional outlet, share experience, and seek advice. The emotional impacts primarily exemplified resilience and positive coping strategies. Formal knowledge regarding the likelihood of treatment response, magnitude of benefit, or side effects was lacking, which lead to uncertainty and anxiety. However, patients expressed appreciation for the availability of treatment options and the hope they provide. Online CRC communities provide patients with convenient and valuable emotional support and disease information. CRC and treatments may have profound impacts beyond efficacy and toxicity. Systematic information and decision tools may help to minimise uncertainties and help patients manage expectations and emotional distress.

A National Online Forum on Ethnic Differences in Cancer Pain Experience

PubMed Central

Im, Eun-Ok; Lee, Seung Hee; Liu, Yi; Lim, Hyun-Ju; Guevara, Enrique; Chee, Wonshik

2009-01-01

Background Cultural values and beliefs related to cancer and pain have been used to explain ethnic differences in cancer pain experience. Yet, very little is known about similarities and differences in cancer pain experience among different ethnic groups. Objectives To explore similarities and differences in cancer pain experience among four major ethnic groups in the United States. Methods A feminist approach by Hall and Stevens was used. This was a cross-sectional qualitative study among 22 White, 15 Hispanic, 11 African American, and 27 Asian cancer patients recruited through both Internet and community settings. Four ethnic-specific online forums were conducted for 6 months. Nine topics related to cancer pain experience were used to guide the online forums. The collected data were analyzed using thematic analysis involving line-by-line coding, categorization, and thematic extraction. Results All participants across ethnic groups reported “communication breakdowns” with their health care providers and experienced “changes in perspectives.” All of them reported that their cancer pain experience was “gendered experience.” White patients focused on how to control their pain and treatment selection process, while ethnic minority patients tried to control pain by minimizing and normalizing it. White patients sought out diverse strategies of pain management; ethnic minority patients tried to maintain normal lives and use natural modalities for pain management. Finally, the cancer pain experience of White patients was highly individualistic and independent, while that of ethnic minority patients was family-oriented. Discussion These findings suggest that nurses need to use culturally competent approaches to cancer pain management for different ethnic groups. Also, the findings suggest further in-depth cultural studies on the pain experience of multiethnic groups of cancer patients. PMID:19289929

The interaction between lived experiences of older patients and their family caregivers confronted with a cancer diagnosis and treatment: a qualitative study.

PubMed

Senden, Cynthia; Vandecasteele, Tina; Vandenberghe, Evy; Versluys, Karen; Piers, Ruth; Grypdonck, Mieke; Van Den Noortgate, Nele

2015-01-01

Despite the growing incidence of cancer among older people, little is understood about how older patients and their family caregivers experience receiving a cancer diagnosis and treatment and how their experiences mutually influence each other. Such knowledge is needed to provide meaningful support for both the older person and family caregivers. Exploring lived experiences of older cancer patients, family caregivers and their interaction. Qualitative interview design. Six outpatient oncology departments at a University Hospital. Thirty-two patients (age range 70-86) and 19 family caregivers (age range 42-83). Semi-structured interviews with a fairly open framework were conducted and analyzed using the constant comparative method inspired by a grounded theory approach. Older patients and family caregivers experience important demands when confronted with cancer. Patients feel the inherent need to search for hope, and the majority are able to do so by employing coping strategies. Because of their older age, patients anticipate getting a serious illness such as a cancer diagnosis. Family caregivers become 'a family member of an older person with cancer' and feel responsible for the patient's well-being and for providing care. If patients are able to maintain a 'positive' story, family caregivers support this ability. If not, they search for a 'positive' story and point this out to the patient. Most family caregivers perceive their care-giving as a normal process and find it difficult to request professional help for themselves. Nevertheless, knowing that professional help is available whenever they need it reassures them. Overall, life continues during the illness experience: the interaction between patients and family caregivers goes on, their relationship proceeds, the coping and care patterns continue. The cancer diagnosis has a major impact on patients and family caregivers. This study offers a framework for understanding what is it like to have cancer in old age

Nurse experiences as cancer survivors: part II--professional.

PubMed

Picard, Carol; Agretelis, Joan; DeMarco, Rosanna F

2004-05-01

To uncover dimensions of nurses' professional experiences of cancer survivorship. Interpretive, phenomenologic. Metropolitan area in the northeastern United States. 25 RNs diagnosed with cancer. Average age was 50 years, and 20 participants were less than five years from initial diagnosis. Interviews. Data were analyzed using the methodology of Newman (1994, 1999) and VanManen (1990). Nurses' professional experiences of cancer survivorship. Professional experiences of cancer survivorship fell into five themes: (a) role ambiguity, (b) a deepening level of compassion for patients and others, (c) self-disclosure as a therapeutic intervention, (d) becoming an advocate for change, and (e) volunteerism. Cancer survivorship was a factor in reshaping participants' clinical practice. Experiencing the role of the patient affirmed the necessity of compassionate care for these participants. Nurses experienced a deepening level of compassion for patients and used self-disclosure as a therapeutic intervention. During and shortly after treatment, role ambiguity (being both patient and nurse) could cause difficulties. Nurses took action to change their clinical environment through their influence on colleagues and the healthcare system and by working through other organizations to improve patient care. Nurse cancer survivors can benefit from the support of colleagues and healthcare providers and an appreciation of the challenge of being both a professional and a patient. The invitation for dialogue as they return to work may help with the challenges of role ambiguity as nurse cancer survivors. Based on this study, nurses value the opportunity to enhance care environments with their two-world knowledge through compassionate care, disclosure, advocacy, and volunteering, and coworkers need to appreciate each nurse's unique response to this potentially life-changing process. Nurses in all settings can learn from their cancer survivor colleagues who have been the recipients of care to

Effect of a Website That Presents Patients’ Experiences on Self-Efficacy and Patient Competence of Colorectal Cancer Patients: Web-Based Randomized Controlled Trial

PubMed Central

Giesler, Jürgen M; Keller, Bettina; Repke, Tim; Leonhart, Rainer; Weis, Joachim; Muckelbauer, Rebecca; Rieckmann, Nina; Müller-Nordhorn, Jacqueline; Lucius-Hoene, Gabriele

2017-01-01

Background Patients often seek other patients’ experiences with the disease. The Internet provides a wide range of opportunities to share and learn about other people’s health and illness experiences via blogs or patient-initiated online discussion groups. There also exists a range of medical information devices that include experiential patient information. However, there are serious concerns about the use of such experiential information because narratives of others may be powerful and pervasive tools that may hinder informed decision making. The international research network DIPEx (Database of Individual Patients’ Experiences) aims to provide scientifically based online information on people’s experiences with health and illness to fulfill patients’ needs for experiential information, while ensuring that the presented information includes a wide variety of possible experiences. Objective The aim is to evaluate the colorectal cancer module of the German DIPEx website krankheitserfahrungen.de with regard to self-efficacy for coping with cancer and patient competence. Methods In 2015, a Web-based randomized controlled trial was conducted using a two-group between-subjects design and repeated measures. The study sample consisted of individuals who had been diagnosed with colorectal cancer within the past 3 years or who had metastasis or recurrent disease. Outcome measures included self-efficacy for coping with cancer and patient competence. Participants were randomly assigned to either an intervention group that had immediate access to the colorectal cancer module for 2 weeks or to a waiting list control group. Outcome criteria were measured at baseline before randomization and at 2 weeks and 6 weeks Results The study randomized 212 persons. On average, participants were 54 (SD 11.1) years old, 58.8% (124/211) were female, and 73.6% (156/212) had read or heard stories of other patients online before entering the study, thus excluding any influence of the

Self-Directed Learning and Prostate Cancer: A Thematic Analysis of the Experiences of Twelve Patients

ERIC Educational Resources Information Center

Rager, Kathleen B.

2006-01-01

Although self-directed learning is a common response for many of the 232,090 US men who are diagnosed with prostate cancer each year, very little is known about the nature of the experience for them. Four themes emerged from interviews with 12 prostate cancer patients describing their self-education efforts in regard to their disease. A…

Concerns about cancer risk and experiences with genetic testing in a diverse population of patients with breast cancer.

PubMed

Jagsi, Reshma; Griffith, Kent A; Kurian, Allison W; Morrow, Monica; Hamilton, Ann S; Graff, John J; Katz, Steven J; Hawley, Sarah T

2015-05-10

To evaluate preferences for and experiences with genetic testing in a diverse cohort of patients with breast cancer identified through population-based registries, with attention to differences by race/ethnicity. We surveyed women diagnosed with nonmetastatic breast cancer from 2005 to 2007, as reported to the SEER registries of metropolitan Los Angeles and Detroit, about experiences with hereditary risk evaluation. Multivariable models evaluated correlates of a strong desire for genetic testing, unmet need for discussion with a health care professional, and receipt of testing. Among 1,536 patients who completed the survey, 35% expressed strong desire for genetic testing, 28% reported discussing testing with a health care professional, and 19% reported test receipt. Strong desire for testing was more common in younger women, Latinas, and those with family history. Minority patients were significantly more likely to have unmet need for discussion (failure to discuss genetic testing with a health professional when they had a strong desire for testing): odds ratios of 1.68, 2.44, and 7.39 for blacks, English-speaking Latinas, and Spanish-speaking Latinas compared with whites, respectively. Worry in the long-term survivorship period was higher among those with unmet need for discussion (48.7% v 24.9%; P <.001). Patients who received genetic testing were younger, less likely to be black, and more likely to have a family cancer history. Many patients, especially minorities, express a strong desire for genetic testing and may benefit from discussion to clarify risks. Clinicians should discuss genetic risk even with patients they perceive to be at low risk, as this may reduce worry. © 2015 by American Society of Clinical Oncology.

Patients’ experiences with continuity of cancer care in Canada

PubMed Central

Easley, Julie; Miedema, Baukje; Carroll, June C.; O’Brien, Mary Ann; Manca, Donna P.; Grunfeld, Eva

2016-01-01

Abstract Objective To explore patient perspectives on and experiences with the coordination and continuity of cancer care. Design Qualitative study using semistructured telephone interviews. Setting Canada. Participants Thirty-eight breast and colorectal cancer survivors 1 to 4 years after diagnosis. Methods Using a constructivist grounded theory approach, semistructured telephone interviews were conducted with the participants. The interviews were digitally recorded, transcribed verbatim, and proofread. Transcripts were reviewed to create a focused coding scheme that was used to develop categories for participants’ experiences. Main findings Although this study focused on the continuity of cancer care, patients described their experiences with cancer care in general, concentrating predominantly on their relationships with individual health care providers (HCPs). Based on patients’ experiences, several themes were identified as the core components of providing good continuity and well coordinated care. The most important overarching theme was communication, which overlapped with 4 other themes: patient-HCP relationships, the role of HCPs, lack of access to care, and timely and tailored information. Conclusion Patients believed that good communication between HCPs and patients was key to improving the overall continuity of cancer care. Continuity of care is an important theoretical concept in cancer care, but it is not easily recognized by patients. They perceive the cancer care continuum and continuity of care as cancer care in general, which is typically framed by the individual relationships with their HCPs. Future research and interventions need to focus on finding and testing ways to improve communication to enhance continuity of cancer care. PMID:27737982

Online Social Engagement by Cancer Patients: A Clinic-Based Patient Survey

PubMed Central

Wallner, Lauren

2016-01-01

Background The Internet is commonly used as a source of health information, but little is known about the Internet practices specific to cancer patients. Objective To understand cancer patients’ use of the Internet as an informational resource and for social support. Methods The researchers conducted a survey of 1282 patients at a comprehensive cancer center to assess frequency of Internet access and online behaviors. Results Of the cancer patients surveyed, 1096 (85.49%) had Internet access; of those with Internet access, 953 (86.95%) reported going online at least weekly, and 747 (68.16%) reported daily online activity. Grouping Internet users by their level of online social engagement revealed that out of 1096 users, 331 (30.20%) had not sought out social connections online, 227 (20.71%) had read about experiences from other cancer patients, 410 (37.41%) had also written about their personal experiences, and 128 (11.68%) had participated in a formal online group for cancer patients. Increased online social engagement was associated with an increased perception that the Internet was useful for social support. Conclusions Internet use among cancer patients was common, and most patients reported that they found useful information about their cancer diagnosis online. Cancer patients who actively posted or shared content perceived more social support from the Internet than those who used the Internet solely as an informational resource or to read about other cancer patients’ experiences. Physicians have a great opportunity to direct users to quality health information on the Web. PMID:28410186

A qualitative exploration of the experiences of patients with breast cancer receiving outpatient-based chemotherapy.

PubMed

Lai, Xiao Bin; Ching, Shirley Siu Yin; Wong, Frances Kam Yuet

2017-10-01

The aim of this study was to understand the experiences of patients with breast cancer and their involvement during outpatient-based chemotherapy in Hong Kong. The outcome evaluation using a mixed-methods approach is not common in interventional studies of nurse-led chemotherapy care programmes. A qualitative approach could provide a deep understanding of the experiences of patients. A qualitative study was conducted. This is part of a randomized controlled trial of a nurse-led care programme (NCT02228200). Individual interviews were conducted in 2013 with 10 patients with breast cancer after they had completed the chemotherapy. Qualitative content analysis was adopted to analyse the interviews. Chemotherapy affected the patients in different ways. Some participants completed the chemotherapy treatment smoothly with minimum side effects, while others encountered many problems during the treatment, which had a great impact on their lives. Guided by their coping attitudes, which were affected by the Chinese culture, most participants adopted behavioural, social, cognitive and emotional strategies to actively cope with the chemotherapy. A few tolerated the treatment passively. Some thought that the process of undergoing chemotherapy was physically bearable, while some equated it with suffering. Others regarded it as a chance to get a new start. The experience of patients with breast cancer during chemotherapy can be likened to that of going on a hike. They reach the peak through different paths and bear different burdens. Yet, they have to go through until the end, regardless of how much of a burden they bear and how they achieve the peak. © 2017 John Wiley & Sons Ltd.

Posttraumatic growth in Iranian cancer patients.

PubMed

Rahmani, A; Mohammadian, R; Ferguson, C; Golizadeh, L; Zirak, M; Chavoshi, H

2012-01-01

To investigate the level and determinants of posttraumatic growth in Iranian cancer patients. This descriptive-correlational design study was conducted within a university-affiliated oncology hospital in Iran. A convenience sample of 450 patients with a definitive diagnosis of cancer of any type completed a demographic questionnaire and a posttraumatic growth inventory. Some disease-related information was obtained from patients' medical records. The mean of posttraumatic growth reported by participants was 76.1. There was a statistically significant association between experience of posttraumatic growth and age (r = - 0.21, P=0.001), education at university level (F = 8.9, P=0.001) and history of treatment by radiotherapy (t = 2.1, P=0.03). The findings of this study suggest that Iranian cancer patients experience a moderate to high level of posttraumatic growth and confirm the hypothesis that the level of posttraumatic growth in non-Western cancer patients is more than that of Western cancer patients. Although, assessing the reasons for this difference needs more investigations.

Prognostic significance of cancer family history for patients with gastric cancer: a single center experience from China.

PubMed

Liu, Xiaowen; Cai, Hong; Yu, Lin; Huang, Hua; Long, Ziwen; Wang, Yanong

2016-06-14

Family history of cancer is a risk factor for gastric cancer. In this study, we investigated the prognoses of gastric cancer patients with family history of cancer. A total of 1805 gastric cancer patients who underwent curative gastrectomy from 2000 to 2008 were evaluated. The clinicopathologic parameters and prognoses of gastric cancer patients with a positive family history (PFH) of cancer were compared with those with a negative family history (NFH). Of 1805 patients, 382 (21.2%) patients had a positive family history of cancer. Positive family history of cancer correlated with younger age, more frequent alcohol and tobacco use, worse differentiation, smaller tumor size, and more frequent tumor location in the lower 1/3 of the stomach. The prognoses of patients with a positive family history of cancer were better than that of patients with a negative family history. Family history of cancer independently correlated with better prognosis after curative gastrectomy in gastric cancer patients.

Therapy preferences of patients with lung and colon cancer: a discrete choice experiment.

PubMed

Schmidt, Katharina; Damm, Kathrin; Vogel, Arndt; Golpon, Heiko; Manns, Michael P; Welte, Tobias; Graf von der Schulenburg, J-Matthias

2017-01-01

There is increasing interest in studies that examine patient preferences to measure health-related outcomes. Understanding patients' preferences can improve the treatment process and is particularly relevant for oncology. In this study, we aimed to identify the subgroup-specific treatment preferences of German patients with lung cancer (LC) or colorectal cancer (CRC). Six discrete choice experiment (DCE) attributes were established on the basis of a systematic literature review and qualitative interviews. The DCE analyses comprised generalized linear mixed-effects model and latent class mixed logit model. The study cohort comprised 310 patients (194 with LC, 108 with CRC, 8 with both types of cancer) with a median age of 63 (SD =10.66) years. The generalized linear mixed-effects model showed a significant ( P <0.05) degree of association for all of the tested attributes. "Strongly increased life expectancy" was the attribute given the greatest weight by all patient groups. Using latent class mixed logit model analysis, we identified three classes of patients. Patients who were better informed tended to prefer a more balanced relationship between length and health-related quality of life (HRQoL) than those who were less informed. Class 2 (LC patients with low HRQoL who had undergone surgery) gave a very strong weighting to increased length of life. We deduced from Class 3 patients that those with a relatively good life expectancy (CRC compared with LC) gave a greater weight to moderate effects on HRQoL than to a longer life. Overall survival was the most important attribute of therapy for patients with LC or CRC. Differences in treatment preferences between subgroups should be considered in regard to treatment and development of guidelines. Patients' preferences were not affected by sex or age, but were affected by the cancer type, HRQoL, surgery status, and the main source of information on the disease.

The health care experience of patients with cancer during the last year of life: Analysis of the SEER-CAHPS data set.

PubMed

Halpern, Michael T; Urato, Matthew P; Kent, Erin E

2017-01-01

Providing high-quality medical care for individuals with cancer during their last year of life involves a range of challenges. An important component of high-quality care during this critical period is ensuring optimal patient satisfaction. The objective of the current study was to assess factors influencing health care ratings among individuals with cancer within 1 year before death. The current study used the Surveillance, Epidemiology, and End Results (SEER)-Consumer Assessment of Healthcare Providers and Systems (CAHPS) data set, a new data resource linking patient-reported information from the CAHPS Medicare Survey with clinical information from the National Cancer Institute's SEER program. The study included 5102 Medicare beneficiaries diagnosed with cancer who completed CAHPS between 1998 and 2011 within 1 year before their death. Multivariable logistic regression analyses examined associations between patient demographic and insurance characteristics with 9 measures of health care experience. Patients with higher general or mental health status were significantly more likely to indicate excellent experience with nearly all measures examined. Sex, race/ethnicity, and education also were found to be significant predictors for certain ratings. Greater time before death predicted an increased likelihood of higher ratings for health plan and specialist physician. Clinical characteristics were found to have few significant associations with experience of care. Individuals in fee-for-service Medicare plans (vs Medicare Advantage) had a greater likelihood of excellent experience with health plans, getting care quickly, and getting needed care. Among patients with cancer within 1 year before death, experience with health plans, physicians, and medical care were found to be associated with sociodemographic, insurance, and clinical characteristics. These findings provide guidance for the development of programs to improve the experience of care among individuals with

Patient education using virtual reality increases knowledge and positive experience for breast cancer patients undergoing radiation therapy.

PubMed

Jimenez, Yobelli A; Cumming, Steven; Wang, Wei; Stuart, Kirsty; Thwaites, David I; Lewis, Sarah J

2018-03-13

Improved access to technology in the radiation therapy (RT) workforce education has resulted in opportunities for innovative patient education methods. This study investigated the impact of a newly developed education tool using the Virtual Environment for Radiotherapy Training (VERT) system on patients' RT knowledge and anxiety. Breast cancer patients were recruited into a control group (CG) (n = 18) who underwent the standard pre-RT education package at a targeted cancer therapy centre, followed by a VERT group (VG) (n = 19). VG patients attended a VERT-based education session detailing RT immobilisation, planning and treatment. All patients completed questionnaires at four time points throughout their treatment, with survey sub-sections on RT knowledge, experience and anxiety. For both groups, anxiety levels were highest at time point 1(T1 after initial radiation oncologist consultation) (CG, 41.2; VG, 43.1), with a gradual decrease observed thereafter at time points before simulation, at the beginning of treatment and at the end of treatment (p > 0.05). The VG's RT knowledge scores were statistically significantly higher than those of the CG scores at all time points following VERT education (p < 0.05). This study reports the high value of VERT breast cancer-targeted education programs in improving RT knowledge and perhaps decreasing patient anxiety. Continued efforts are required to improve patients' accessibility to VERT in Australia, and to better understand the effect of VERT's unique educational features on patients' emotional and physical needs throughout their RT.

Assessing medical decision making capacity among cancer patients: Preliminary clinical experience of using a competency assessment instrument.

PubMed

Akechi, Tatsuo; Okuyama, Toru; Uchida, Megumi; Sugano, Koji; Kubota, Yosuke; Ito, Yoshinori; Sakamoto, Nobuhiro; Kizawa, Yoshiyuki

2015-12-01

This study investigates the usefulness of the Structured Interview for Competency and Incompetency Assessment Testing and Ranking Inventory (SICIATRI) for cancer patients, which is a structured interview that assesses a patient's competency in clinical practice. The SICIATRI, originally developed to measure patients' competency to give informed consent, were administered referred cancer patients who needed for assessing medical decision making capacity. The usefulness of the SICIATRI was investigated retrospectively. Recommendation for modification of the SICIATRI for cancer patients if applicable were made by the research team. Among the 433 cancer patients referred for psychiatric consultation, 12 were administered the SICIATRI and all of the administration were conducted without big problems. All patients were 60 years or older. The most common purpose for competency evaluation was to analyze patients' understanding of the anti-cancer treatment proposed by oncologists, followed by their refusal of the treatment. Half of the patients (n = 6) were diagnosed with delirium and three among them were judged as having the most impaired status of a patient's competency. Two patients (17%) were diagnosed with major depression and another two (17%) were mental retardation and each one patient was diagnosed with dementia and past history of alcohol dependence. Among 6 patients without delirium 5 subjects including a dementia patient were judged as fully competent. Total of 5 small potential modifications of the SICIATRI for its use with Japanese cancer patients were recommended. Our experience suggests that the SICIATRI is a useful instrument for psycho-oncology clinical practice.

Experiences of family of patient with newly diagnosed advanced terminal stage hepatocellular cancer.

PubMed

Shih, Whei-Mei Jean; Hsiao, Ping-Ju; Chen, Min-Li; Lin, Mei-Hsiang

2013-01-01

Hepatocellular carcinoma (HCC) is the most common primary liver cancer and the third leading cause of cancer-related death worldwide due to its generally poor prognosis. Caregiver burden for liver cancer cases is higher than with other cancer and needs especial attention. To explore the experiences of families of patients with newly diagnosed advanced terminal stage hepatocellular cancer by interview. Nine participants were recruited in this study. Content analysis of the interviews revealed four themes: blaming oneself, disrupting the pace of life, searching all possible regimens, and not letting go. This study provides new insight into the needs and support of family members especially when they are facing loved ones with newly diagnosed advanced terminal stage HCC. These results will inform future supportive care service development and intervention research aimed at providing assistance in reducing unmet supportive care needs and psychological distress of these family members.

Intersectionality and the LGBT Cancer Patient.

PubMed

Damaskos, Penny; Amaya, Beau; Gordon, RuthAnn; Walters, Chasity Burrows

2018-02-01

To present the ways in which race, ethnicity, class, gender, and sexual orientation interact in the context of cancer risk, access to care, and treatment by health care providers. Cancer risk factors, access to care, and treatment for lesbian, gay, bisexual, and transgender (LGBT) patients are discussed within the context of intersectionality and cultural humility. Peer reviewed articles, cancer organizations, and clinical practice. LGBT patients have multiple identities that intersect to create unique experiences. These experiences shape their interactions with the health care system with the potential for positive or negative consequences. More data is needed to describe the outcomes of those experiences and inform clinical practice. Oncology nurses have an obligation to acknowledge patients' multiple identities and use the practice of cultural humility to provide individualized, patient-centered care. Copyright © 2017 Elsevier Inc. All rights reserved.

Nursing care dependence in the experiences of advanced cancer inpatients.

PubMed

Piredda, Michela; Bartiromo, Chiara; Capuzzo, Maria Teresa; Matarese, Maria; De Marinis, Maria Grazia

2016-02-01

Increasing burden of cancer in Europe and socio-demographic trends imply that more cancer patients will face high levels of dependency. Care dependency is often perceived as a distressing experience by cancer patients who are concerned about becoming a burden to others. The experience of care dependence has been scarcely investigated in advanced cancer patients, especially in the hospital setting. This study aimed at describing advanced cancer patients' experiences of care dependence in hospital and of the factors perceived by them as contributing to decrease or increase this dependence. The study used a descriptive phenomenological approach based on Husserl's (1913) life world perspective. Data collection and analysis followed Giorgi's (1997) five basic methodological steps. Data were gathered by semi-structured interviews with thirteen advanced cancer adult inpatients of a teaching hospital. The interviews were audio-recorded and the recordings transcribed word for word. Three themes emerged: 'dependency discovers new meanings of life', 'active coping with dependency' and 'the care cures the dependent person'. The essential meaning of care dependency was the possibility to become aware of being a person as both an object and subject of care. Dependence appears as an experience with strong relational connotations, which enable patients to see differently their life, themselves, the world and others. Dependency is revealed as a natural experience, only partly in accordance with previous studies. Deeper insight into the meaning patients attach to care dependency can enable nurses to better meet the patient's needs, e.g. by improving caring relationships with patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

Evaluating the experiences and support needs of people living with chronic cancer: development and initial validation of the Chronic Cancer Experiences Questionnaire (CCEQ).

PubMed

Harley, Clare; Pini, Simon; Kenyon, Lucille; Daffu-O'Reilly, Amrit; Velikova, Galina

2016-08-10

Many advanced cancers are managed as chronic diseases, yet there are currently no international guidelines for the support of patients living with chronic cancer. It is important to understand whether care and service arrangements meet the needs of this rapidly growing patient group. This study aimed to develop and validate a questionnaire to capture patients' experiences of living with chronic cancer and their views of clinical and support services. The research was carried out between 1 July 2010 and 21 February 2013. A conceptual framework and initial item bank were derived from prior interviews with 56 patients with chronic cancer. Items were reviewed by 4 oncologists and 1 clinical nurse specialist and during 2 focus groups with 9 patients. Pilot questionnaires were completed by 416 patients across 5 cancer units. Item selection and scale reliability was explored using descriptive data, exploratory factor analysis, internal consistency analyses, multitrait scaling analyses and known-groups comparisons. The final Chronic Cancer Experiences Questionnaire (CCEQ) includes 75 items. 62 items contribute to 14 subscales with internal consistency between α 0·68-0·88 and minimal scaling errors. Known-groups comparisons confirmed subscale utility in distinguishing between patient groups. Subscales were labelled: managing appointments, coordination of care, general practitioner involvement, clinical trials, information and questions, making treatment decisions, symptom non-reporting, key worker, limitations, sustaining normality, financial advice, worries and anxieties, sharing feelings with others, and accessing support. 13 items assessing symptom experiences were retained as single items. The CCEQ has the potential to be used as a clinical instrument to assess patient experiences of chronic cancer or to screen for patient needs. It may also be used as an outcome measure for evaluating programmes and models of care and may identify areas for service development that

How the internet affects patients' experience of cancer: a qualitative study.

PubMed

Ziebland, Sue; Chapple, Alison; Dumelow, Carol; Evans, Julie; Prinjha, Suman; Rozmovits, Linda

2004-03-06

To explore how men and women with cancer talk about using the internet. Qualitative study using semistructured interviews collected by maximum variation sampling. Respondents recruited throughout the United Kingdom during 2001-2. 175 men and women aged 19-83 years, with one of five cancers (prostate, testicular, breast, cervical, or bowel) diagnosed since 1992 and selected to include different stages of treatment and follow up. Internet use, either directly or via friend or family, was widespread and reported by patients at all stages of cancer care, from early investigations to follow up after treatment. Patients used the internet to find second opinions, seek support and experiential information from other patients, interpret symptoms, seek information about tests and treatments, help interpret consultations, identify questions for doctors, make anonymous private inquiries, and raise awareness of the cancer. Patients also used it to check their doctors' advice covertly and to develop an expertise in their cancer. This expertise, reflecting familiarity with computer technology and medical terms, enabled patients to present a new type of "social fitness." Cancer patients used the internet for a wide range of information and support needs, many of which are unlikely to be met through conventional health care. Serious illness often undermines people's self image as a competent member of society. Cancer patients may use the internet to acquire expertise to display competence in the face of serious illness.

Support groups for cancer patients.

PubMed

Weis, Joachim

2003-12-01

Within the last two decades psychosocial group interventions have been developed to help cancer patients cope better with the psychosocial sequelae of cancer diagnosis and treatment. Support groups include a variety of different approaches some of which focus on behavioral aspects and symptoms (e.g. pain, fatigue) and some on the expression of emotions. Most of these support programs are structured and short-term and include elements such as delivery of information, emotional and social support, stress management strategies based on the cognitive behavioral approach and the teaching of relaxation techniques. Beyond individual therapy, group therapies can address cancer-related issues to enable patients to gain emotional support from other patients with similar experiences and to use these experiences to buffer the fear of dying and the unknown future. One of the overall therapeutic targets is the promotion of the patient's individual resources. Therefore, such groups are helpful not only for the patients, but also for their spouses and other family members, in relieving the cancer-related distress. In Germany, support groups are established in rehabilitation clinics as well as outpatient programs and play an important role in palliative and supportive care of cancer patients. Against the background of changes in the patients' role, the increasing availability of information technology (e.g. the internet) and patient advocacy in cancer treatment, support groups may be understood as a mean of empowerment of the patient. The need for group interventions such as outpatient programs for cancer patients is claimed not only by the health professionals but also by the patients themselves. There is some research emphasizing that avoidance of feelings, denial of concerns, feelings of helplessness and social isolation are correlated with poorer health outcome and poorer quality of life. Many empirical studies have provided evidence-based knowledge that structured group

Modes of relating to contingency: An exploration of experiences in advanced cancer patients.

PubMed

Kruizinga, Renske; Hartog, Iris D; Scherer-Rath, Michael; Schilderman, Hans; Van Laarhoven, Hanneke

2017-08-01

Throughout their lives, people are confronted with unexpected life events, which can be difficult to incorporate into their life narratives. Such a confrontation can result in an experience of contingency. Different ways of relating to contingency have been described by Wuchterl: denying, acknowledging, and "encounter with the Other." In the present article, we aim to trace these theoretical distinctions in real-life experiences of patients. We analyzed 45 interviews using the constant comparative method with a directed content analysis approach in the Atlas.ti coding program. The interviews originated from a randomized controlled trial evaluating an assisted reflection on life events and ultimate life goals. Seven spiritual counselors from six hospitals in the Netherlands conducted the interviews from July of 2014 to March of 2016. All 45 patients had advanced cancer. We found four different modes into which relating to contingency can be classified: denying, acknowledging, accepting, and receiving. With denying, patients did not mention any impact of the life event on their lives. In acknowledging, the impact was recognized and a start was made to incorporate the event into their life. In accepting, patients went through a process of reinterpretation of the event. In receiving, patients talked about receiving insights from their illness and living a more conscious life. Our study is the first to investigate the different ways of relating to contingency in clinical practice. The defined modes will improve our understanding of the various ways in which cancer patients relate to their disease, allowing caregivers to better target and shape individual care.

How the internet affects patients' experience of cancer: a qualitative study

PubMed Central

Ziebland, Sue; Chapple, Alison; Dumelow, Carol; Evans, Julie; Prinjha, Suman; Rozmovits, Linda

2004-01-01

Objective To explore how men and women with cancer talk about using the internet. Design Qualitative study using semistructured interviews collected by maximum variation sampling. Setting Respondents recruited throughout the United Kingdom during 2001-2. Participants 175 men and women aged 19-83 years, with one of five cancers (prostate, testicular, breast, cervical, or bowel) diagnosed since 1992 and selected to include different stages of treatment and follow up. Results Internet use, either directly or via friend or family, was widespread and reported by patients at all stages of cancer care, from early investigations to follow up after treatment. Patients used the internet to find second opinions, seek support and experiential information from other patients, interpret symptoms, seek information about tests and treatments, help interpret consultations, identify questions for doctors, make anonymous private inquiries, and raise awareness of the cancer. Patients also used it to check their doctors' advice covertly and to develop an expertise in their cancer. This expertise, reflecting familiarity with computer technology and medical terms, enabled patients to present a new type of “social fitness.” Conclusion Cancer patients used the internet for a wide range of information and support needs, many of which are unlikely to be met through conventional health care. Serious illness often undermines people's self image as a competent member of society. Cancer patients may use the internet to acquire expertise to display competence in the face of serious illness. PMID:15001506

Integrating cancer survivors' experiences into UK cancer registries: design and development of the ePOCS system (electronic Patient-reported Outcomes from Cancer Survivors)

PubMed Central

Ashley, L; Jones, H; Thomas, J; Forman, D; Newsham, A; Morris, E; Johnson, O; Velikova, G; Wright, P

2011-01-01

Background: Understanding the psychosocial challenges of cancer survivorship, and identifying which patients experience ongoing difficulties, is a key priority. The ePOCS (electronic patient-reported outcomes from cancer survivors) project aims to develop and evaluate a cost-efficient, UK-scalable electronic system for collecting patient-reported outcome measures (PROMs), at regular post-diagnostic timepoints, and linking these with clinical data in cancer registries. Methods: A multidisciplinary team developed the system using agile methods. Design entailed process mapping the system's constituent parts, data flows and involved human activities, and undertaking usability testing. Informatics specialists built new technical components, including a web-based questionnaire tool and tracking database, and established component-connecting data flows. Development challenges were overcome, including patient usability and data linkage and security. Results: We have developed a system in which PROMs are completed online, using a secure questionnaire administration tool, accessed via a public-facing website, and the responses are linked and stored with clinical registry data. Patient monitoring and communications are semiautomated via a tracker database, and patient correspondence is primarily Email-based. The system is currently honed for clinician-led hospital-based patient recruitment. Conclusions: A feasibility test study is underway. Although there are possible challenges to sustaining and scaling up ePOCS, the system has potential to support UK epidemiological PROMs collection and clinical data linkage. PMID:22048035

A qualitative study on mindfulness-based stress reduction for breast cancer patients: how women experience participating with fellow patients.

PubMed

Schellekens, Melanie P J; Jansen, Ellen T M; Willemse, Heidi H M A; van Laarhoven, Hanneke W M; Prins, Judith B; Speckens, Anne E M

2016-04-01

Peer support groups for cancer patients show mixed findings regarding effectiveness on psychological wellbeing. When embedded in a psychosocial intervention, such as mindfulness-based stress reduction (MBSR), peer support might be of more benefit to participants. This study is a qualitative exploration of how women with breast cancer experience the possible benefits and impediments of participating with fellow patients in an MBSR training. Five focus groups (n = 37) and three individual interviews (n = 3) were conducted with breast cancer patients who participated in MBSR. The qualitative data were analysed with the constant comparative method in order to develop a grounded theory. We could identify a process where at the start of MBSR, patients experienced anticipatory fear for facing the suffering of fellow patients, especially for those who could not be cured anymore. In most women, this fear gradually subsided during the first two sessions. The atmosphere in the MBSR training was experienced as safe and supportive, providing a context where participants could connect with and trust one another. In turn, this facilitated participants to learn from one another. Our findings do not only show that the peer group facilitates the learning process in MBSR, but the MBSR also seemed to provide an atmosphere that promotes the experienced social support in participants. In addition, the results emphasize the importance for mindfulness teachers to acknowledge and explore the fear for facing fellow patients in the group. Future research should examine whether the results are generalizable to patients with other cancer types.

A protocol for a discrete choice experiment: understanding preferences of patients with cancer towards their cancer care across metropolitan and rural regions in Australia.

PubMed

Wong, Shu Fen; Norman, Richard; Dunning, Trisha L; Ashley, David M; Lorgelly, Paula K

2014-10-24

Medical decision-making in oncology is a complicated process and to date there are few studies examining how patients with cancer make choices with respect to different features of their care. It is also unknown whether patient choices vary by geographical location and how location could account for observed rural and metropolitan cancer differences. This paper describes an ongoing study that aims to (1) examine patient and healthcare-related factors that influence choices of patients with cancer; (2) measure and quantify preferences of patients with cancer towards cancer care using a discrete choice experiment (DCE) and (3) explore preference heterogeneity between metropolitan and rural locations. A DCE is being conducted to understand how patients with cancer choose between two clinical scenarios accounting for different patient and healthcare-related factors (and levels). Preliminary qualitative research was undertaken to guide the development of an appropriate DCE design including characteristics that are important and relevant to patients with cancer. A fractional factorial design using the D-efficiency criteria was used to estimate interactions among attributes. Multinomial logistic regression will be used for the primary DCE analysis and to control for sociodemographic and clinical characteristics. The Barwon Health Human Research Ethics Committee approved the study. Findings from the study will be presented in national/international conferences and peer-reviewed journals. Our results will form the basis of a feasibility study to inform the development of a larger scale study into preferences of patients with cancer and their association with cancer outcomes. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Reconceptualizing Cancer Survivorship Through Veterans' Lived Experiences

PubMed Central

Martin, Lindsey Ann; Moye, Jennifer; Street, Richard L.; Naik, Aanand D.

2015-01-01

This study assessed the biopsychosocial impact of cancer on Veteran older adult survivors by garnering their accounts of their illness experiences. A narrative analysis of 73 cancer diagnosis and treatment stories reveals five “paths” Veterans are taking 18 months postdiagnosis. These paths indicate that cancer survivorship cannot be conceptualized as a one-size-fits-all experience but rather is a process of Veterans understanding and making sense of the effects of cancer on their lives. Our future goal is to develop a screening tool to help clinicians identify a patient's “path” to tailor survivorship care to meet specific needs. PMID:24611460

Beginning level nursing students' experiences with cancer patients in their first clinical placement: a qualitative appraisal in Turkey.

PubMed

Yildiz, Hicran; Akansel, Neriman

2011-01-01

This study was conducted to evaluate beginning nursing students' point of view related to caring cancer patients in their first clinical placement. Data were collected by evaluating the diaries kept by four beginning level nursing students who were assigned to do their fundamentals of nursing clinical practice in hematology clinic from February to May 2011. A qualitative research method was used and data were analyzed using inductive method. Nursing students experienced anxiety, had difficulties while communicating with cancer patients and observed some negative practices related to patient care and treatment. During their clinical placement nursing students were able to differentiate right and wrong practices in clinical environment, they tried to tailor their theoretical knowledge to the clinical practice and reported decrease in their anxiety by the end of clinical rotation. Being assigned to care for cancer patients was a stressful experience for the first year students. According to these results, it can be said that clinics such as hematology can be used as a clinical placement only in mandatory conditions for beginning level nursing students because of their limited clinical experience and the knowledge requirement related to these patients.

Brachytherapy of prostate cancer after colectomy for colorectal cancer: pilot experience.

PubMed

Koutrouvelis, Panos G; Theodorescu, Dan; Katz, Stuart; Lailas, Niko; Hendricks, Fred

2005-01-01

We present a method of brachytherapy for prostate cancer using a 3-dimensional stereotactic system and computerized tomography guidance in patients without a rectum due to previous treatment for colorectal cancer. From June 1994 to November 2003 a cohort of 800 patients were treated with brachytherapy for prostate cancer. Four patients had previously been treated for colorectal cancer with 4,500 cGy external beam radiation therapy, abdominoperineal resection and chemotherapy, while 1 underwent abdominoperineal resection alone for ulcerative colitis. Because of previous radiation therapy, these patients were not candidates for salvage external beam radiation therapy or radical prostatectomy and they had no rectum for transrectal ultrasound guided transperineal brachytherapy or cryotherapy. A previously described, 3-dimensional stereotactic system was used for brachytherapy in these patients. The prescribed radiation dose was 120 to 144 Gy with iodine seeds in rapid strand format. Patient followup included clinical examination and serum prostate specific antigen measurement. Average followup was 18.6 months. Four patients had excellent biochemical control, while 1 had biochemical failure. Patients did not experience any gastrointestinal morbidity. One patient had a stricture of the distal ureter, requiring a stent. Three-dimensional computerized tomography guided brachytherapy for prostate cancer in patients with a history of colorectal cancer who have no rectum is a feasible method of treatment.

Experiences of the Breast Cancer Patients Undergoing Radiotherapy at a Public Hospital Peshawar Pakistan

PubMed Central

Habibullah, Gulzar; Gul, Raisa; Cassum, Shanaz; Elahi, Rehana

2018-01-01

Objective: This study aimed to explore the experiences of female breast cancer patients undergoing radiotherapy (RT) in a public hospital in Peshawar, Pakistan. Methods: This study employed a descriptive exploratory method. A purposive sample of 14 breast cancer women undergoing RT was selected for this study. Data were collected over the period of 5 months, using a semi-structured interview guide and conducting in-depth face-to-face interviews. These interviews were audio taped and transcribed by a bilingual transcriber. The translated version of the interview was coded, and the analysis was done manually. Results: Four main categories emerged from data analysis, which were: feelings and perceptions of the patients, their challenges, coping strategies, and teaching and informational needs. Conclusions: Women undergoing RT in this culture experience more intense psychological effects, as compared to the physical effects. Keeping in mind, the magnitude of the emotional stress experienced by the participants, recommendations for policy reforms, and training for female RT staff are suggested based on findings of this research. PMID:29607379

Gender as a Context for Interpreting the Self-Directed Learning Experiences of Prostate and Breast Cancer Patients

ERIC Educational Resources Information Center

Rager, Kathleen B.

2007-01-01

This article reports the findings from a secondary analysis of the data from two qualitative studies conducted by the researcher regarding the self-directed learning experiences of prostate and breast cancer patients. Of interest were possible differences in the descriptions of the participants' experiences that appear to relate to gender.…

A Qualitative Inquiry of the Lived Experiences of Music Therapists Who Have Survived Cancer Who Are Working with Medical and Hospice Patients

PubMed Central

Lee, Jin Hyung

2016-01-01

Cancer is a debilitating illness that affects more than one in every three Americans at sometime in their life time regardless of their social, cultural, ethnic, religious, or economic status. A few studies in the psychotherapy literature have investigated the impact of cancer on the personal and professional lives of psychotherapists. However, such investigations are yet unknown in medical or music therapy literature. In this descriptive phenomenological study, the researcher interviewed five American music therapists who have survived cancer and also work with patients in medical hospitals or hospice settings. The purpose of this study was to fully describe their lived experience of surviving cancer and examine how the cancer experience affected their clinical work thereafter. The data was analyzed using an open coding method from grounded theory which identified four major themes: (a) personal significance; (b) relational significance; (c) musical significance and (d) professional significance. The descriptions provided by these participants of their cancer experience as patients, survivors, and cancer surviving therapists, have revealed various psychosocial and physical issues encountered, and numerous coping methods they employed, and poignantly explained how their clinical approach evolved and expanded due to the personal experience of cancer. Specific issues in relation to countertransference, self-disclosure, and ways of developing empathic approaches without having such personal experience were discussed in addition to suggestions for future research. PMID:27917147

A Qualitative Inquiry of the Lived Experiences of Music Therapists Who Have Survived Cancer Who Are Working with Medical and Hospice Patients.

PubMed

Lee, Jin Hyung

2016-01-01

Cancer is a debilitating illness that affects more than one in every three Americans at sometime in their life time regardless of their social, cultural, ethnic, religious, or economic status. A few studies in the psychotherapy literature have investigated the impact of cancer on the personal and professional lives of psychotherapists. However, such investigations are yet unknown in medical or music therapy literature. In this descriptive phenomenological study, the researcher interviewed five American music therapists who have survived cancer and also work with patients in medical hospitals or hospice settings. The purpose of this study was to fully describe their lived experience of surviving cancer and examine how the cancer experience affected their clinical work thereafter. The data was analyzed using an open coding method from grounded theory which identified four major themes: (a) personal significance; (b) relational significance; (c) musical significance and (d) professional significance. The descriptions provided by these participants of their cancer experience as patients, survivors, and cancer surviving therapists, have revealed various psychosocial and physical issues encountered, and numerous coping methods they employed, and poignantly explained how their clinical approach evolved and expanded due to the personal experience of cancer. Specific issues in relation to countertransference, self-disclosure, and ways of developing empathic approaches without having such personal experience were discussed in addition to suggestions for future research.

Breast cancer treatment and work disability: patient perspectives.

PubMed

Tiedtke, Corine; Dierckx de Casterlé, Bernadette; de Rijk, Angelique; Christiaens, Marie-Rose; Donceel, Peter

2011-12-01

Most female breast cancer patients are forced to interrupt their professional activities during treatment. Qualitative research was carried out to assess women's experiences of being work disabled because of breast cancer. In-depth interviews were analyzed to understand patient's experiences and to gain more insight in their perspectives on living with breast cancer. We identified a 'three-experience model': (1) disruption, with the feeling of irreparable loss, despair and no hope for the future; (2) episode, an unpleasant and inconvenient period, after which life continues as before; and/or (3) meaningful period, during which new life priorities' are set. The different experiences will require different types of support, especially concerning communication around disability and returning to work. Our findings highlight the need of an individual approach of the management of work disability for breast cancer patients. Copyright © 2011 Elsevier Ltd. All rights reserved.

Work Experiences of Patients Receiving Palliative Care at a Comprehensive Cancer Center: Exploratory Analysis.

PubMed

Glare, Paul A; Nikolova, Tanya; Alickaj, Alberta; Patil, Sujata; Blinder, Victoria

2017-07-01

Employment-related issues have been largely overlooked in cancer patients needing palliative care. These issues may become more relevant as cancer evolves into more of a chronic illness and palliative care is provided independent of stage or prognosis. To characterize the employment situations of working-age palliative care patients. Cross-sectional survey setting/subjects: Consecutive sample of 112 patients followed in palliative care outpatient clinics at a comprehensive cancer center. Thirty-seven-item self-report questionnaire covering demographics, clinical status, and work experiences since diagnosis. The commonest cancer diagnoses were breast, colorectal, gynecological, and lung. Eighty-one percent had active disease. Seventy-four percent were on treatment. Eighty percent recalled being employed at the time of diagnosis, with 65% working full time. At the time of the survey, 44% were employed and 26% were working full time. Most participants said work was important, made them feel normal, and helped them feel they were "beating the cancer". Factors associated with being employed included male gender, self-employed, and taking less than three months off work. Respondents with pain and/or other symptoms were significantly less likely to be working. On multivariate analysis, only pain (odds ratio [OR] 8.16, p < 0.001) and other physical symptoms (OR 5.90, p = 0.012) predicted work status; gender (OR 2.07), self-employed (OR 3.07), and current chemotherapy (OR 1.81) were included in the model, but were not statistically significant in this small sample. Work may be an important issue for some palliative care patients. Additional research is needed to facilitate ongoing employment for those who wish or need to continue working.

Metrics for evaluating patient navigation during cancer diagnosis and treatment: crafting a policy-relevant research agenda for patient navigation in cancer care.

PubMed

Guadagnolo, B Ashleigh; Dohan, Daniel; Raich, Peter

2011-08-01

Racial and ethnic minorities as well as other vulnerable populations experience disparate cancer-related health outcomes. Patient navigation is an emerging health care delivery innovation that offers promise in improving quality of cancer care delivery to these patients who experience unique health-access barriers. Metrics are needed to evaluate whether patient navigation can improve quality of care delivery, health outcomes, and overall value in health care during diagnosis and treatment of cancer. Information regarding the current state of the science examining patient navigation interventions was gathered via search of the published scientific literature. A focus group of providers, patient navigators, and health-policy experts was convened as part of the Patient Navigation Leadership Summit sponsored by the American Cancer Society. Key metrics were identified for assessing the efficacy of patient navigation in cancer diagnosis and treatment. Patient navigation data exist for all stages of cancer care; however, the literature is more robust for its implementation during prevention, screening, and early diagnostic workup of cancer. Relatively fewer data are reported for outcomes and efficacy of patient navigation during cancer treatment. Metrics are proposed for a policy-relevant research agenda to evaluate the efficacy of patient navigation in cancer diagnosis and treatment. Patient navigation is understudied with respect to its use in cancer diagnosis and treatment. Core metrics are defined to evaluate its efficacy in improving outcomes and mitigating health-access barriers. Copyright © 2011 American Cancer Society.

A guided self-help intervention targeting psychological distress among head and neck cancer and lung cancer patients: motivation to start, experiences and perceived outcomes.

PubMed

Krebber, Anne-Marie H; van Uden-Kraan, Cornelia F; Melissant, Heleen C; Cuijpers, Pim; van Straten, Annemieke; Becker-Commissaris, Annemarie; Leemans, C René; Verdonck-de Leeuw, Irma M

2017-01-01

Recent results of a randomized clinical trial showed that a guided self-help intervention (based on problem-solving therapy) targeting psychological distress among head and neck cancer and lung cancer patients is effective. This study qualitatively explored motivation to start, experiences with and perceived outcomes of this intervention. Data were collected from semi-structured interviews of 16 patients. All interviews were audio-recorded and transcribed verbatim. Data were analyzed individually by two coders and coded into key issues and themes. Patients participated in the intervention for intrinsic (e.g. to help oneself) and for extrinsic reasons (e.g. being asked by a care professional or to help improve health care). Participants indicated positive and negative experiences with the intervention. Several participants appreciated participating as being a pleasant way to work on oneself, while others described participating as too confrontational. Some expressed their disappointment as they felt the intervention had brought them nothing or indicated that they felt worse temporarily, but most participants perceived positive outcomes of the intervention (e.g. feeling less distressed and having learned what matters in life). Cancer patients have various reasons to start a guided self-help intervention. Participants appreciated the guided self-help as intervention to address psychological distress, but there were also concerns. Most participants reported the intervention to be beneficial. The results suggest the need to identify patients who might benefit most from guided self-help targeting psychological distress and that interventions should be further tailored to individual cancer patients' requirements.

Assessing Patient-Centered Communication in Cancer Care: Stakeholder Perspectives

PubMed Central

Mazor, Kathleen M.; Gaglio, Bridget; Nekhlyudov, Larissa; Alexander, Gwen L.; Stark, Azadeh; Hornbrook, Mark C.; Walsh, Kathleen; Boggs, Jennifer; Lemay, Celeste A.; Firneno, Cassandra; Biggins, Colleen; Blosky, Mary Ann; Arora, Neeraj K.

2013-01-01

Purpose: Patient-centered communication is critical to quality cancer care. Effective communication can help patients and family members cope with cancer, make informed decisions, and effectively manage their care; suboptimal communication can contribute to care breakdowns and undermine clinician-patient relationships. The study purpose was to explore stakeholders' views on the feasibility and acceptability of collecting self-reported patient and family perceptions of communication experiences while receiving cancer care. The results were intended to inform the design, development, and implementation of a structured and generalizable patient-level reporting system. Methods: This was a formative, qualitative study that used semistructured interviews with cancer patients, family members, clinicians, and leaders of health care organizations. The constant comparative method was used to identify major themes in the interview transcripts. Results: A total of 106 stakeholders were interviewed. Thematic saturation was achieved. All stakeholders recognized the importance of communication and endorsed efforts to improve communication during cancer care. Patients, clinicians, and leaders expressed concerns about the potential consequences of reports of suboptimal communication experiences, such as damage to the clinician-patient relationship, and the need for effective improvement strategies. Patients and family members would report good communication experiences in order to encourage such practices. Practical and logistic issues were identified. Conclusion: Patient reports of their communication experiences during cancer care could increase understanding of the communication process, stimulate improvements, inform interventions, and provide a basis for evaluating changes in communication practices. This qualitative study provides a foundation for the design and pilot testing of such a patient reporting system. PMID:23943884

[Ovarian tissue cryopreservation in cancer patients--six years of clinical experience].

PubMed

Huser, M; Záková, J; Crha, I; Smardová, L; Král, Z; Revel, A; Ventruba, P

2012-04-01

Presentation of clinical results and experience with this technique during past six years. Original paper. Gynekologicko-porodnická klinika LF MU a FN Brno, Interní hemato-onkologická klinika LF MU a FN Brno, Department of Obstetrics and Gynecology. Hadassah University Hospital Ein-Karem, Jerusalem, Izrael. Ovarian tissue cryopreservation (OTC) and its future auto-transplantation becomes an alternative for patients to prevent serious damage of ovarian function by oncology treatment. Patient is indicated to OTC in case of high risk of ovarian failure due to planned chemotherapy and impossibility to use other oncofertility techniques. Ovarian tissue harvesting is done by laparoscopy in short-term general anesthesia. After tissue processing the samples are cryopreserved in programmable automatic freezer or by vitrification. The auto-transplantation of ovarian tissue is planned after the complete cure of patient's malignancy. Our workplace doesn't have own experience with tissue transplantation - until now cryopreserved tissue has not yet been utilized by the patients. Clinical experience with this technique gained by our team during academic stay in abroad Israeli clinic is presented. During the years of 2005-2011 the OTC was performed in 19 cancer patients before chemotherapy. In majority of cases, patients suffered from blood or lymph node systemic malignancy (84%). Average age of women was 26 years. The patient set consisted of mostly nulliparous women (88%). Patient's average body mass index was 23,9 kg/m2. The length of systemic chemotherapy averaged 7.1 months. Time from fertility preservation counseling to chemotherapy was not exceeding one week (7.2 days on average). Ovarian tissue harvesting was conducted by laparoscopic surgery in all cases. The length of surgery did not exceed 60 minutes and no surgical complications were observed. The case of ovarian tissue transplantation performed on abroad university settings is discussed. In the consensus of with

Metrics for evaluating patient navigation during cancer diagnosis and treatment: crafting a policy-relevant research agenda for patient navigation in cancer care

PubMed Central

Guadagnolo, B. Ashleigh; Dohan, Daniel; Raich, Peter

2016-01-01

Background Racial and ethnic minorities as well as other vulnerable populations experience disparate cancer-related health outcomes. Patient navigation is an emerging health care delivery innovation that offers promise in improving quality of cancer care delivery to these patients who experience unique health access barriers. Metrics are needed to evaluate whether patient navigation can improve quality of care delivery, health outcomes, and overall value in health care during diagnosis and treatment of cancer. Methods Information regarding the current state of the science examining patient navigation interventions was gathered via search of the published scientific literature. A focus group of providers, patient navigators, and health policy experts was convened as part of the Patient Navigation Leadership Summit sponsored by the American Cancer Society. Key metrics were identified for assessing the efficacy of patient navigation in cancer diagnosis and treatment. Results Patient navigation data exists for all stages of cancer care; however, the literature is more robust for its implementation during prevention, screening, and early diagnostic work-up of cancer. Relatively fewer data are reported for outcomes and efficacy of patient navigation during cancer treatment. Metrics are proposed for a policy-relevant research agenda to evaluate the efficacy of patient navigation in cancer diagnosis and treatment. Conclusions Patient navigation is understudied with respect to its use in cancer diagnosis and treatment. Core metrics are defined to evaluate its efficacy in improving outcomes and mitigating health access barriers. PMID:21780091

Patients' and family members' views on patient-centered communication during cancer care.

PubMed

Mazor, Kathleen M; Beard, Reneé L; Alexander, Gwen L; Arora, Neeraj K; Firneno, Cassandra; Gaglio, Bridget; Greene, Sarah M; Lemay, Celeste A; Robinson, Brandi E; Roblin, Douglas W; Walsh, Kathleen; Street, Richard L; Gallagher, Thomas H

2013-11-01

To explore patients' and family members' views on communication during cancer care and to identify those aspects of clinician-patient communication which were most important to patients and family members. We conducted a secondary data analysis of qualitative data from 137 patients with cancer and family members of patients with cancer. We used a modified version of the constant comparative method and coding paradigm of grounded theory. Patients want sensitive, caring clinicians who provide information that they need, when they need it, in a way that they can understand; who listen and respond to questions and concerns, and who attempt to understand the patient's experience. Effective information exchange and a positive interpersonal relationship with the clinician were of fundamental importance to patients and family members. These were interrelated; for instance, failure to provide information a patient needed could damage the relationship, whereas excellent listening could foster the relationship. Information exchange and relationship were also integral to decision-making, managing uncertainty, responding to emotions, and self-management. Clinicians who were responsive to patients' needs beyond the immediate medical encounter were valued. The complexity of cancer care today suggests that efforts to improve communication must be multilevel, acknowledging and addressing patient, clinician, organizational and policy barriers, and facilitators. Measurement tools are needed to assess cancer patients' and family members' experiences with communication over the course of cancer care to provide meaningful, actionable feedback to those seeking to optimize their effectiveness in communicating with patients with cancer. Copyright © 2013 John Wiley & Sons, Ltd.

Surviving testicular cancer: the Lebanese lived experience.

PubMed

Saab, Mohammad; Noureddine, Samar; Abu-Saad Huijer, Huda; Dejong, Jocelyn

2014-01-01

Testicular cancer is thought to have a great impact on its survivors, yet there has been limited literature on the topic globally and no literature on the topic in Lebanon and the Arab region. The purpose of this study was to explore the lived experience of Lebanese testicular cancer survivors and gain an in-depth understanding of the psychosexual aspect of their experience. A hermeneutic phenomenological approach with semistructured digitally recorded interviews and observational field notes was utilized. A purposive sample of Lebanese testicular cancer survivors, aged between 18 and 50 years, in remission for at least 3 years, and willing to share personal information was recruited. Interviews were transcribed verbatim in Arabic. Data saturation was achieved at the seventh interview; a total of eight informants were recruited. The opening question was, "Tell me about your life since you got treated for testicular cancer," and was followed by probing questions. Two to three weeks after the initial interview, informants were called to validate the investigators' primary analysis. Six core themes emerged: cancer perception in the Lebanese culture; "do not show, do not tell"; cancer experience is a turning point; fertility, manhood, and relationships; coping with cancer; and preserved aspects of life. The findings provide an in-depth understanding of the experience of Lebanese testicular cancer survivors with a focus on the psychosexual aspect of this experience. The results suggest the need to educate patients about testicular cancer and its effect on their fertility.

Patients' experiences and care needs during the diagnostic phase of an Integrated Brain Cancer Pathway: A Case Study.

PubMed

Vedelø, Tina Wang; Sørensen, Jens Christian Hedemann; Delmar, Charlotte

2018-03-31

To identify and describe patients' experiences and care needs throughout the diagnostic phase of an Integrated Brain Cancer Pathway. A malignant brain tumour is a devastating diagnosis, which may cause psychical symptoms and cognitive deficits. Studies have shown that the shock of the diagnosis, combined with the multiple symptoms, affect patients' ability to understand information and express needs of care and support. Unmet needs have been reported within this group of patients, however, the experiences and care needs of patients going through the diagnostic phase of a standardised Integrated Brain Cancer Pathway have not previously been explored. A Case Study design was used to provide detailed information of the complex needs of patients being diagnosed with a malignant brain tumour. Research interviews and direct participant observation of four patients during hospital admission, brain surgery and discharge were conducted in a Danish university hospital. Systematic text condensation was used to analyse the data material. Four major themes were identified: information needs, balancing hope and reality while trying to perceive the unknown reality of brain cancer, not knowing what to expect and participants' perceptions of the relationship with the health care providers. The analysis revealed that participants were in risk of having unmet information needs and that contextual factors seemed to cause fragmented care that led to feelings of uncertainty and loss of control. Brain tumour patients have complex care needs and experience a particular state of vulnerability during the diagnostic phase. Through personal relationships based on trust with skilled health care providers, participants experienced an existential recognition and alleviation of emotional distress. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Authoring experience: the significance and performance of storytelling in Socratic dialogue with rehabilitating cancer patients.

PubMed

Knox, Jeanette Bresson Ladegaard; Svendsen, Mette Nordahl

2015-08-01

This article examines the storytelling aspect in philosophizing with rehabilitating cancer patients in small Socratic dialogue groups (SDG). Recounting an experience to illustrate a philosophical question chosen by the participants is the traditional point of departure for the dialogical exchange. However, narrating is much more than a beginning point or the skeletal framework of events and it deserves more scholarly attention than hitherto given. Storytelling pervades the whole Socratic process and impacts the conceptual analysis in a SDG. In this article we show how the narrative aspect became a rich resource for the compassionate bond between participants and how their stories cultivated the abstract reflection in the group. In addition, the aim of the article is to reveal the different layers in the performance of storytelling, or of authoring experience. By picking, poking and dissecting an experience through a collaborative effort, most participants had their initial experience existentially refined and the chosen concept of which the experience served as an illustration transformed into a moral compass to be used in self-orientation post cancer.

White Cancer Patients’ Perception of Gender and Ethnic Differences in Pain Experience

PubMed Central

Im, Eun-Ok

2008-01-01

Not considering cancer patients’ own views and experience with pain, especially gender and ethnic differences in their cancer pain experience, was reported to be a major contributor to the miscommunication that frequently results in inadequate cancer pain management. The purpose of this study was to explore white cancer patients’ perception of gender and ethnic differences in pain experience through an online forum. This was a descriptive qualitative study among 29 white cancer patients based on a feminist approach. Nine topics related to cancer pain experience were used. The data were analyzed using thematic analysis: 5 themes were identified. First, the participants perceived that pain accompanies cancer throughout the diagnosis and treatment process. Second, the specific characteristics of the participants’ individual culture and its view of pain and cancer could result in different cancer pain experience even among white cancer patients. Third, the participants complained that women’s pain was not taken seriously by health care providers. Fourth, the participants reported highly individualized pain experience with emotional pain. Finally, the participants wanted to have a control of their own pain management process. Based on the findings, implications for nursing research and practice are proposed. PMID:17135816

Patient Preferences for Pain Management in Advanced Cancer: Results from a Discrete Choice Experiment.

PubMed

Meads, David M; O'Dwyer, John L; Hulme, Claire T; Chintakayala, Phani; Vinall-Collier, Karen; Bennett, Michael I

2017-10-01

Pain from advanced cancer remains prevalent, severe and often under-treated. The aim of this study was to conduct a discrete choice experiment with patients to understand their preferences for pain management services and inform service development. Focus groups were used to develop the attributes and levels of the discrete choice experiment. The attributes were: waiting time, type of healthcare professional, out-of-pocket costs, side-effect control, quality of communication, quality of information and pain control. Patients completed the discrete choice experiment along with clinical and health-related quality of life questions. Conditional and mixed logit models were used to analyse the data. Patients with cancer pain (n = 221) and within palliative care services completed the survey (45% were female, mean age 64.6 years; age range 21-92 years). The most important aspects of pain management were: good pain control, zero out-of-pocket costs and good side-effect control. Poor or moderate pain control and £30 costs drew the highest negative preferences. Respondents preferred control of side effects and provision of better information and communication, over access to certain healthcare professionals. Those with lower health-related quality of life were less willing to wait for treatment and willing to incur higher costs. The presence of a carer influenced preferences. Outcome attributes were more important than process attributes but the latter were still valued. Thus, supporting self-management, for example by providing better information on pain may be a worthwhile endeavour. However, service provision may need to account for individual characteristics given the heterogeneity in preferences.

Patient views on smoking, lung cancer, and stigma: a focus group perspective.

PubMed

Lehto, Rebecca H

2014-06-01

Patients with lung cancer, the leading cause of cancer death, are shown to have high levels of psychological distress and poorer quality of life as compared to patients with other cancer types. The purpose of this paper is to describe patient focus group discussions about the lung cancer experience in relation to perceived stigmatization, smoking behaviors, and illness causes; and to discuss implications of these findings relative to the role of the nurse as a patient advocate. Eleven adult lung cancer patients participated in audio taped focus group sessions. Discussion questions probed patient perceptions of lung cancer challenges and adaptation issues. Six primary themes from the qualitative analysis included: 1) societal attitudes; 2) institutional practices and experiences; 3) negative thoughts and emotions such as guilt, self-blame and self-deprecation, regret, and anger; 4) actual stigmatization experiences; 5) smoking cessation: personal choices versus addiction; and 6) causal attributions. Patients with lung cancer uniquely experience an added burden from developing an illness that the public recognizes is directly associated with smoking behaviors. Stigmatization and smoking related concerns are of high importance. Oncology nurses must be at the forefront in ensuring that patients with lung cancer do not experience additional burden from perceptions that they somehow deserve and need to defend why they have the illness that they are facing. Copyright © 2014 Elsevier Ltd. All rights reserved.

Relationship between negative mental adjustment to cancer and distress in thyroid cancer patients.

PubMed

Seok, Jeong-Ho; Choi, Won-Jung; Lee, Yong Sang; Park, Cheong Soo; Oh, Young-Ja; Kim, Jong-Sun; Chang, Hang-Seok

2013-05-01

Previous studies have reported that over a third of cancer patients experience significant psychological distress with diagnosis and treatment of cancer. Mental adjustment to cancer as well as other biologic and demographic factors may be associated with their distress. We investigated the relationship between mental adjustment and distress in patients with thyroid cancer prior to thyroidectomy. One hundred and fifty-two thyroid cancer patients were included in the final analysis. After global distress levels were screened with a distress thermometer, patients were evaluated concerning mental adjustment to cancer, as well as demographic and cancer-related characteristics. A thyroid function test was also performed. Regression analysis was performed to discern significant factors associated with distress in thyroid cancer patients. Our regression model was significant and explained 38.5% of the total variance in distress of this patient group. Anxious-preoccupation and helpless-hopeless factors on the mental adjustment to cancer scale were significantly associated with distress in thyroid cancer patients. Negative emotional response to cancer diagnosis may be associated with distress in thyroid cancer patients awaiting thyroidectomy. Screening of mental coping strategies at the beginning of cancer treatment may predict psychological distress in cancer patients. Further studies on the efficacy of psychiatric intervention during cancer treatment may be needed for patients showing maladaptive psychological responses to cancer.

A qualitative study exploring male cancer patients' experiences with percutaneous nephrostomy.

PubMed

Bigum, Lene Hyldgaard; Spielmann, Marlène Elisabeth; Juhl, Gitte; Rasmussen, Annlise

2015-04-01

Obstructive uropathy due to advanced cancer can be efficiently treated with a percutaneous nephrostomy. The treatment is associated with complications and frequent readmissions. How the patients' quality of life is affected by a nephrostomy remains uncertain. The aim of this study was to describe how a nephrostomy is perceived by patients and its effects on their everyday lives. Semi-structured interviews were conducted in the patients' home using a mind map. The inclusion criteria were locally advanced or metastatic urological cancer treated with a nephrostomy for a minimum of 1 month. All interviews were audio recorded, transcribed and analysed using a grounded theory approach. Ten male patients were interviewed, eight with prostate cancer and two with bladder cancer. Treatment with nephrostomy influenced the physical activity level and restricted normal social activities. Readmissions had a negative influence on mood. However, the patients who experienced symptom improvement were thankful for having had the nephrostomy, despite the inconveniences. Communicating about the hazards and benefits helped patients to adjust their expectations of a nephrostomy. The study describes how nephrostomy is a burdensome intervention accompanied by a plethora of complex physical and psychosocial issues. Having a nephrostomy on a palliative indication has extensive implications for the patients, which should not be neglected or underestimated. Individual assessment of each patient, together with excellent communication regarding the procedure and outcome, is essential. Most patients had frequent contact with the healthcare system and additional support could be offered by a palliative care service.

[Malnutrition and weight loss - nurse assessment of nutritional status and counselling: experiences of patients with newly diagnosed or relapsed cancer].

PubMed

Kröner, A; Stoll, H; Spichiger, E

2012-04-01

Due to the anorexia-cachexia syndrome, cancer patients are already suffering from nutritional problems and weight loss by the time they receive their diagnosis and start chemotherapy. In the oncology outpatient clinic of a Swiss university hospital, patients currently undergo a nutritional assessment and receive individual counselling at the beginning of cancer treatment. This qualitative study explored cancer patients' experiences with weight loss and nutritional problems as well as how they experienced the assessment and the consecutive counselling by nurses. Interviews were conducted with 12 patients and qualitative content analysis was used for data analysis. Results showed that patients barely registered the weight loss and did not interpret it as an early warning signal. Nevertheless, they attempted to improve their nutritional habits soon after diagnosis, prior to receiving any counselling. The patients did not experience the assessment as troublesome. They appreciated the nurses' advice and implemented the suggestions they found appropriate. This study highlights the importance of patient education regarding weight loss and nutritional problems early in the course of an illness. Patients may not be aware of nutritional problems at this early stage and may lack the necessary specialised knowledge. Assessment and counselling provided by nurses offer targeted measures for prevention of malnutrition and weight loss.

Ethnic Differences in Cancer Pain Experience

PubMed Central

Im, Eun-ok

2008-01-01

Background Inconsistent findings on ethnic differences in cancer pain experience suggest the need for further studies on this topic for adequate cancer pain management. Objectives The purpose of this study was to determine ethnic differences in cancer pain experience of 4 ethnic groups in the U.S. Methods A feminist perspective provided the theoretical basis. This was a survey of a multiethnic sample of 480 cancer patients asking questions on sociodemographic characteristics and health/illness status, 3 unidimensional cancer pain scales, 2 multidimensional cancer pain scales, the Memorial Symptom Assessment Scale, and the Functional Assessment of Cancer Therapy Scale. The data were analyzed using descriptive and inferential statistics including ANOVA and hierarchical multiple regression analyses. Results The results indicated certain ethnic differences in types of pain and symptoms that patients experienced. Also, the results demonstrated significant ethnic differences in cancer pain and functional status. The VDS, VAS, FS, MPQ, and BPI scores of Non-Hispanic (N-H) Asian participants were significantly lower than those of Hispanic and N-H White participants (p<.01). The VAS and MPQ scores of N-H African American participants were significantly lower than those of Hispanic and N-H White participants (p<.01). The FACT-G scores of N-H Asian participants were significantly lower than Hispanic participants (p<.01). The findings also indicated that being N-H Asian or not was a significant predictor of the VDS, FS, and BPI scores. Discussion The findings suggest further in-depth qualitative exploration on cultural values and beliefs related to cancer pain in each ethnic group and national-scope studies with a larger number of ethnic minorities on this topic. PMID:17846550

The experience of patients with early-stage testicular cancer during the transition from active treatment to follow-up surveillance.

PubMed

Shen, Abra H; Howell, Doris; Edwards, Elizabeth; Warde, Padraig; Matthew, Andrew; Jones, Jennifer M

2016-04-01

To gain a better understanding of the experiences of patients with early-stage testicular cancer during the transition from active cancer treatment to follow-up care. Cross-sectional multimethod study (questionnaires, focus groups, and telephone interviews) to describe experiences of patients with testicular cancer transitioning to survivorship. Questionnaire package included standardized measures of survivorship knowledge, feeling of preparedness, health-related distress, and perspectives on care coordination. Standard descriptive statistics and Mann-Whitney tests to examine associations between all outcomes based on demographic and clinical variables were performed. Qualitative results (focus groups and interviews) were analyzed with qualitative content analysis. Based on quantitative data (n = 90) and qualitative analyses (n = 13), participants had relatively high survivorship knowledge, most testicular cancer survivors were not provided with any formal transition planning or documentation, and a substantial minority felt unprepared to cope with the aftereffects of testicular cancer and the posttreatment survivorship phase. Younger men had lower survivorship knowledge, feelings of preparedness, and continuity of care scores and were less likely to report having received any self-management tools and education or information of patient resources. Participants reported that they did not know what to expect physically or emotionally after treatment ended and many continued to be frustrated and worried about their health problems. They expressed the need for reliable and personalized resources on what to expect after treatment and more formal transition care planning. Patients with testicular cancer continue to struggle in their transition to posttreatment survivorship. Quality of care must emphasize a shift from a purely disease-focused approach to a wellness-centered approach that provides coordinated, patient-centered, and comprehensive care to optimize quality

Aboriginal experiences of cancer and care coordination: Lessons from the Cancer Data and Aboriginal Disparities (CanDAD) narratives.

PubMed

Reilly, Rachel; Micklem, Jasmine; Yerrell, Paul; Banham, David; Morey, Kim; Stajic, Janet; Eckert, Marion; Lawrence, Monica; Stewart, Harold B; Brown, Alex

2018-04-24

Aboriginal people with cancer experience worse outcomes than other Australians for a range of complex and interrelated reasons. A younger age at diagnosis, higher likelihood of more advanced cancer or cancer type with poorer prognosis, geographic isolation and cultural and language diversity mean that patient pathways are potentially more complex for Aboriginal people with cancer. In addition, variation in the quality and acceptability of care may influence cancer outcomes. This study sought to understand how care coordination influences Aboriginal people's experiences of cancer treatment. Interviews with 29 Aboriginal patients or cancer survivors, 11 carers and 22 service providers were carried out. Interviews were semi-structured and sought to elicit experiences of cancer and the health-care system. The manifest content of the cancer narratives was entered onto a cancer pathway mapping tool and underlying themes were identified inductively. The practice of cancer care coordination was found to address the needs of Aboriginal patients and their families/carers in 4 main areas: "navigating the health system"; "information and communication"; "things to manage at home"; and "cultural safety". The CanDAD findings indicate that, when the need for cancer care coordination is met, it facilitated continuity of care in a range of ways that may potentially improve cancer outcomes. However, the need remains unmet for many. Findings support the importance of dedicated care coordination to enable Aboriginal people to receive adequate and appropriate patient-centred care, so that the unacceptable disparity in cancer outcomes between Aboriginal and non-Aboriginal people can be addressed. © 2018 The Authors. Health Expectations published by John Wiley & Sons Ltd.

On the road and away from home: a systematic review of the travel experiences of cancer patients and their families.

PubMed

Vindrola-Padros, Cecilia; Brage, Eugenia; Chambers, Pinkie

2018-05-23

Traveling for cancer care is difficult as patients might be suffering from the side effects of treatment, need to cover additional costs, and face disruption of daily life. The aim of this review was to synthesize the evidence on travel needs and experiences during cancer treatment from the point of view of patients and their families. This is a systematic review of the literature. The PRISMA statement was used to guide the reporting of the methods and findings. We searched for peer-reviewed articles in MEDLINE, CINAHL PLUS, and Web of Science and selected articles based on the following criteria: focused on patients and their families; presented findings from empirical studies; and examined travel and transport experiences for cancer screening, treatment, and related care. The MMAT was used to assess the quality of the studies. A total of 16 articles were included in the review. Most of the studies used a qualitative design, were carried out in high-income countries and were conducted more than 10 years ago. Several problems were reported regarding travel and relocation: social and physical demands of transport, travel, and relocation; life disruption and loss of daily routines; financial impact; and anxieties and support needs when returning home. Patients and carers consistently reported lack of support when traveling, relocating, and returning home. Future research needs to explore patient experiences under current treatment protocols and healthcare delivery models, in a wider range of geographical contexts, and different stages of the patient pathway.

Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK.

PubMed

Errington, Julie; Malik, Ghada; Evans, Julie; Baston, Jenny; Parry, Annie; Price, Lisa; Johnstone, Hina; Peters, Selena; Oram, Victoria; Howe, Karen; Whiteley, Emma; Tunnacliffe, Jane; Veal, Gareth J

2016-07-01

While the majority of childhood cancer clinical trials are treatment related, additional optional research investigations may be carried out that do not directly impact on treatment. It is essential that these studies are conducted ethically and that the experiences of families participating in these studies are as positive as possible. A questionnaire study was carried out to investigate the key factors that influence why families choose to participate in optional nontherapeutic research studies, the level of understanding of the trials involved, and the experiences of participation. A total of 100 participants from six UK centers were studied; 77 parents, 10 patients >16 years, and 13 patients aged 8-15 years. Ninety-seven percent of parents and 90% of patients felt that information provided prior to study consent was of the right length, with 52% of parents and 65% of patients fully understanding the information provided. Seventy-four percent of parents participated in research studies in order to "do something important", while 74% of patients participated "to help medical staff". Encouragingly, <5% of participants felt that their clinical care would be negatively affected if they did not participate. Positive aspects of participation included a perception of increased attention from medical staff. Negative aspects included spending longer periods in hospital and the requirement for additional blood samples. Ninety-six percent of parents and 87% of patients would participate in future studies. The study provides an insight into the views of childhood cancer patients and their parents participating in nontherapeutic clinical research studies. Overwhelmingly, the findings suggest that participation is seen as a positive experience. © 2016 The Authors. Pediatric Blood & Cancer, published by Wiley Periodicals, Inc.

Experiences and attitudes of patients with terminal cancer and their family caregivers toward the disclosure of terminal illness.

PubMed

Yun, Young Ho; Kwon, Yong Chol; Lee, Myung Kyung; Lee, Woo Jin; Jung, Kyung Hae; Do, Young Rok; Kim, Samyong; Heo, Dae Seog; Choi, Jong Soo; Park, Sang Yoon

2010-04-10

PURPOSE We investigated the experiences of cancer patients and their family caregivers who became aware that the cancer was terminal, how they became aware, and how they felt about disclosure of the information. PATIENTS AND METHODS In this cohort study, we administered questionnaires to 619 consecutive patients determined by physicians to be terminally ill and to their family caregivers. RESULTS A total of 481 patients and 381 family caregivers completed the questionnaire. A majority of patients (58.0%) and caregivers (83.4%) were aware of the patient's terminal status. Approximately 28% of patients and 23% of caregivers reported that they guessed it from the patient's worsening condition. The patient group was more likely than the caregiver group (78.6% v 69.6%) to prefer that patients be informed of their terminal status. Patients informed of their terminal diagnosis had a significantly better quality of life and fewer symptoms and had a lower rate of emotional distress than patients who guessed it from their worsening condition. Younger patients and patients who paid the treatment costs themselves were significantly more likely to want to be told when their illness was terminal. If the patient paid the treatment cost and was employed at the time of the cancer diagnosis, the family caregivers were more likely to prefer disclosure of terminal illness. CONCLUSION Most patients with terminal cancer and their family caregivers preferred disclosure, and patients who knew of their terminal diagnosis had a lower rate of emotional distress and a higher health-related quality of life.

Experience with perioperative pirfenidone for lung cancer surgery in patients with idiopathic pulmonary fibrosis.

PubMed

Iwata, Takekazu; Yoshida, Shigetoshi; Nagato, Kaoru; Nakajima, Takahiro; Suzuki, Hidemi; Tagawa, Tetsuzo; Mizobuchi, Teruaki; Ota, Satoshi; Nakatani, Yukio; Yoshino, Ichiro

2015-10-01

Idiopathic pulmonary fibrosis (IPF) is a progressive diffuse lung disease associated with an increased risk of lung cancer. Patients with IPF sometimes develop a life-threatening acute exacerbation of IPF (AE-IPF) after lung cancer surgery. In this retrospective study, pirfenidone, an antifibrotic agent, was perioperatively administered to IPF patients with lung cancer with the aim of preventing postoperative AE-IPF, and the feasibility and clinical outcomes were investigated. Twelve IPF patients with concomitant lung cancer who received perioperative pirfenidone treatment (PPT) for lung cancer surgery were retrospectively investigated. Sixteen IPF patients undergoing lung cancer surgery without PPT were analyzed as historical controls. Compared to the controls, the PPT patients had a more severely impaired preoperative pulmonary function and a larger number of limited pulmonary resections. There was a significant preoperative decrease in the serum KL-6 levels of the PPT patients. No severe pirfenidone-related complications or IPF-related events occurred in the PPT patients, while six control patients developed AE-IPF (P = 0.0167). A quantitative histopathological evaluation of resected lung specimens found that tissue changes associated with IPF were significantly fewer in the PPT patients (P = 0.021). PPT is a feasible perioperative treatment for IPF patients with lung cancer. Its effectiveness in preventing postoperative AE-IPF thus warrants prospective verification.

[Initial clinical experience of proton therapy at Shizuoka Cancer Center].

PubMed

Murayama, Shigeyuki; Fuji, Hiroshi; Yamashita, Haruo; Futami, Yasuyuki; Numano, Masumi; Harada, Hideyuki; Kamata, Minoru; Nishimura, Tetsuo

2005-10-01

To present the initial experience and preliminary clinical results of patients treated mainly with proton irradiation at the newly developed proton therapy facility at Shizuoka Cancer Center. We reviewed 125 patients who underwent proton therapy between July 2003 and December 2004. Of these 125 patients, 11 had head and neck malignancies, 15 non-small cell lung cancers, 22 hepatocellular carcinomas, 62 prostate cancers, and 15 other malignant tumors. Most patients experienced Grade 0-1 acute morbidities (NCI-CTC) in skin or mucosa, while a temporary Grade 2-3 reaction was observed in a high dose area. Response rates were 73% for H & N malignancies, 100% for NSCLC, and 77% for HCC. PSA evaluation for patients with prostate cancer revealed a high rate of complete response. The efficacy and safety of proton therapy at Shizuoka Cancer Center was demonstrated for patients with early-stage cancer or locally advanced disease.

Dissociative symptomatology in cancer patients.

PubMed

Civilotti, Cristina; Castelli, Lorys; Binaschi, Luca; Cussino, Martina; Tesio, Valentina; Di Fini, Giulia; Veglia, Fabio; Torta, Riccardo

2015-01-01

The utilization of the post-traumatic stress disorder (PTSD) diagnostic spectrum is currently being debated to categorize psychological adjustment in cancer patients. The aims of this study were to: (1) evaluate the presence of cancer-related traumatic dissociative symptomatology in a sample of cancer patients; (2) examine the correlation of cancer-related dissociation and sociodemographic and medical variables, anxiety, depression, and post-traumatic stress symptomatology; (3) investigate the predictors of cancer-related dissociation. Ninety-two mixed cancer patients (mean age: 58.94, ds = 10.13) recruited from two hospitals in northern Italy were administered a questionnaire on sociodemographic and medical characteristics, the Karnofsky Scale to measure the level of patient activity and medical care requirements, the Hospital Anxiety and Depression Scale (HADS) to evaluate the presence of anxiety and depression, the Impact of Event Scale Revised (IES-R) to assess the severity of intrusion, avoidance, and hypervigilance, and the Peritraumatic Dissociative Experiences Questionnaire (PDEQ) to quantify the traumatic dissociative symptomatology. 31.5% of participants report a PDEQ score above the cutoff. The results indicated that dissociative symptomatology was positively correlated with HADS scores (HADS-Anxiety: r = 0.476, p < 0.001; HADS-Depression: r = 0.364, p < 0.001) and with IES-R scores (IES-R-Intrusion: r = 0.698, p < 0.001; IES-R-Avoidance: r = 0.619, p < 0.001; IES-R- Hypervigilance: r = 0.681, p < 0.001). A stepwise regression analysis was performed in order to find the predictors of cancer-related traumatic dissociative symptomatology. The results converged on a three predictor model revealing that IES-R-Intrusion, IES-R-Avoidance, and IES-R-Hyperarousal accounted for 53.9% of the explained variance. These findings allow us to hypothesize a specific psychological reaction which may be ascribed to the traumatic spectrum within the context of cancer

Attitudes and experiences of family involvement in cancer consultations: a qualitative exploration of patient and family member perspectives.

PubMed

Laidsaar-Powell, Rebekah; Butow, Phyllis; Bu, Stella; Fisher, Alana; Juraskova, Ilona

2016-10-01

Family members (FMs) often provide support to patients, regularly attend cancer consultations and are often involved in medical decision-making. Limited research has been conducted to date to understand patients' and FMs' perceptions about family involvement in cancer consultations. Therefore, this study aimed to qualitatively explore the attitudes and experiences of Australian cancer patients and FMs regarding (1) family attendance at consultations, (2) family roles in consultations and (3) the challenges of family involvement. Thirty patients and 33 FMs, recruited through either a tertiary metropolitan oncology clinic or national cancer patient advocacy group, participated in semi-structured interviews. Interviews were transcribed and qualitatively analysed using Framework analysis methods. Four relevant themes were identified: (1) negotiating family involvement, (2) attitudes towards the roles FMs assume, (3) challenges of family involvement and (4) family-clinician interactions. Overall, patients appreciated family involvement and valued FMs' provision of emotional and informational support, and FMs also found benefit from participating in consultations. Some patients appreciated their FM assuming the role of 'messenger' between the consultation and extended family. However, a number of challenges were also reported by patients (e.g. maintaining privacy, mismatched patient-family information needs) and FMs (e.g. emotional toll of supportive roles, negative behaviours of clinicians towards FMs). FMs appear to make valuable contributions to cancer consultations, and their presence can benefit both the patient and the FM themselves in many ways. However, for some FMs, attending consultations can be challenging. Study findings point to the need for psychosocial support addressing FMs' needs and the development of communication strategies for oncology clinicians to positively engage with FMs. Further research is needed in these areas.

A pilot study of the experience of family caregivers of patients with advanced pancreatic cancer using a mixed methods approach.

PubMed

Sherman, Deborah W; McGuire, Deborah B; Free, David; Cheon, Joo Young

2014-09-01

Pancreatic cancer presents a wide spectrum of significant symptomatology. The high symptom burden, coupled with a rapidly fatal diagnosis, limits preparation or time for adjustment for both patients and their family caregivers. From the initial diagnosis and throughout the illness experience, the physical and emotional demands of caregiving can predispose caregivers themselves to illness and a greater risk of mortality. Understanding the negative and positive aspects of caregiving for patients with advanced pancreatic cancer will inform interventions that promote positive caregiver outcomes and support caregivers in their role. To provide feasibility data for a larger, mixed methods, longitudinal study focused on the experience of family caregivers of patients with advanced pancreatic cancer and preliminary qualitative data to substantiate the significance of studying this caregiver population. This was a mixed methods study guided by the Stress Process Model. Eight family caregivers of patients with advanced pancreatic cancer from oncology practices of a university-affiliated medical center were surveyed. The pilot results supported the ability to recruit and retain participants and informed recruitment and data collection procedures. The qualitative results provided preliminary insights into caregiver experiences during the diagnosis and treatment phases. Key findings that substantiated the significance of studying these caregivers included the caregiving context of the history of sentinel symptoms, the crisis of diagnosis, the violation of assumptions about life and health, recognition of the circle of association, and contextual factors, as well as primary and secondary stressors, coping strategies, resources, discoveries, gains and growth, associated changes/transitions, and unmet caregiver needs. Findings indicated caregivers' willingness to participate in research, highlighted the negative and positive aspects of the caregiver experience, and reinforced the

The road we travel: Māori experience of cancer.

PubMed

Walker, Tai; Signal, Louise; Russell, Marie; Smiler, Kirsten; Tuhiwai-Ruru, Rawiri

2008-08-08

This research explores Maori experiences of cancer. It does so to shed light on the causes of cancer inequalities for Maori. The views of 44 Maori affected by cancer--including patients, survivors, and their whanau (extended families)--were gathered in five hui (focus groups) and eight interviews in the Horowhenua, Manawatu, and Tairawhiti districts of New Zealand. After initial analysis, a feedback hui was held to validate the findings. Maori identified effective providers of cancer services such as Maori health providers. They also identified positive and negative experiences with health professionals. The involvement of whanau in the cancer journey was viewed as highly significant as was a holistic approach to care. Participants had many suggestions for improvements to cancer services such as better resourcing of Maori providers, cultural competence training for all health workers, the use of systems 'navigators', and the inclusion of whanau in the cancer control continuum. The research identifies a range of health system, healthcare process, and patient level factors that contribute to inequalities in cancer for Maori. It also explores the role of racism as a root cause of these inequalities and calls for urgent action.

"I Got My Diagnosis on a Yellow Post-it Note": Young Adult Cancer Patients' Experiences of the Process of Being Diagnosed With Cancer.

PubMed

Hauken, May Aasebø; Hølge-Hazelton, Bibbi; Larsen, Torill M B

2018-06-01

Cancer in young adults is rare but young adult cancer patients (YACPs) are at an increased risk of severe physical and psychosocial impairments during cancer treatment and survivorship. However, little is known about the onset of this process. The aim of this study was to explore how young cancer survivors experience the process of being diagnosed with cancer. A qualitative method founded on a phenomenological-hermeneutical approach was used and included in-depth interviews with 20 young adult survivors (aged 24-35 years) with different cancer diagnoses, analyzed by Systematic Text Condensation. The participants' experiences of the diagnosis process were elaborated according to 3 main themes: (1) "I felt something was wrong, but…," (2) "The traumatic uncertainty," and (3) "The day my world collapsed." The findings indicate that the YACPs experienced a diagnosis of cancer as a highly traumatic and long-lasting process, characterized by lack of information and uncertainty. The findings indicate that healthcare professionals do not acknowledge the vulnerable phase of life and transitional challenges of YACPs. The findings highlight the need to raise awareness of cancer in young adulthood in the public and in the primary healthcare system, to shorten the diagnosis process, and to clarify responsibility for age-related information and psychosocial follow-up during the diagnosis process. Further research is highly warranted.

[Psychosocial problems and needs among cancer patients].

PubMed

Mehlsen, Mimi Yung; Jensen, Anders Bonde; Zachariae, Bobby

2007-04-30

Cancer can have a serious impact on patient well-being and quality of life. The international literature reports a higher prevalence of psychosocial problems among cancer patients; primarily problems associated with difficulties in the family, duties in the household, work and leisure, sexuality and finances. The prevalence of these problems among Danish cancer patients is still unknown. A questionnaire assessing psychosocial problems and needs was mailed out to all patients who had been at the Department of Oncology, Aarhus Hospital in week 35, 2004. A total of 71%, i.e. 515 patients (34% men and 66% women) in active treatment and control returned the questionnaire. High levels of emotional distress were reported by 39% of the patients. High levels of distress were primarily related to problems with worries about their spouses, household duties, financial problems and experiences of insufficient collaboration between health care and social services. Between 19% and 25% of the patients required further help to handle emotional problems, legal and financial problems and practical problems in the home. A considerable proportion of oncology patients experience significant levels of distress. This group of distressed patients also report unmet needs for psychosocial support.

Qualitative Study on the Perceptions of Terminally Ill Cancer Patients and Their Family Members Regarding End-of-Life Experiences Focusing on Palliative Sedation.

PubMed

Eun, Young; Hong, In-Wha; Bruera, Eduardo; Kang, Jung Hun

2017-06-01

Patients with terminal cancer experience refractory symptoms in the last days of life. Although palliative sedation (PS) is recommended for patients suffering unbearable symptoms with imminent death, it requires clear communication between physicians and patients/caregivers. Understanding the demands and perceptions of patients and caregivers in the end-of-life phase are needed for effective communication. To explore patient experiences regarding end-of-life status and PS. The study was performed between October and December, 2013 with eligible terminal cancer patients and their families in a non-religious, tertiary healthcare facility in Korea. Eligibility criteria were a hospitalized cancer patient with a life expectancy of less than three months and who had never experienced PS. Data were collected via face-to-face in-depth interviews and analyzed using the constant comparative method of qualitative analysis. Saturation was achieved after conducting interviews with 13 patients or care-giving family members. Enrolled patients raised the following issues: 1) simultaneously harboring the hope of prolonging life and wishing for a peaceful death, 2) experiencing difficulties in having honest conversations with caregivers regarding death, 3) possessing insufficient knowledge and information regarding PS, and 4) hoping for the decision on PS to be made before suffering becomes too great. Terminally ill cancer patients and their caregivers expressed conflicting desires in hoping to prolong life and simultaneously wishing to experience a peaceful death. Improvements in the communications that occur among physicians, patients, and caregivers on the issues of prognosis and PS are needed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Return-to-work intervention during cancer treatment - The providers' experiences.

PubMed

Petersen, K S; Momsen, A H; Stapelfeldt, C M; Olsen, P R; Nielsen, C V

2018-03-01

To explore in-depth understanding of providers' experiences when involved in a return-to-work (RTW) intervention offered during cancer treatment. Semi-structured individual interviews and participant observations at a hospital department and two municipal job centers were carried out, including ten providers (physicians, nurses and social workers). A phenomenological-hermeneutic approach was applied, involving coding, identification of themes and interpretation of findings. Three major themes were identified: Treatment first, Work as an integrated component in cancer rehabilitation, and Challenges in bringing up work issues. Differences in providers' experiences of the RTW intervention offered to cancer patients were found: in the hospital setting RTW was a second priority, whereas in the municipality job centers it was an integrated component. Further studies are needed to investigate how and when occupational rehabilitation services can be implemented across sectors to support cancer patients' RTW. In the future, work issues ought to be systematically presented by providers across sectors as early as possible to support cancer patients' RTW. Cancer patients' individual needs and thoughts about RTW are to be identified by both health care providers during treatment and social workers at the municipality level and shared across sectors. © 2017 John Wiley & Sons Ltd.

The lived experience of men diagnosed with prostate cancer.

PubMed

Krumwiede, Kelly A; Krumwiede, Norma

2012-09-01

To investigate the lived experience of prostate cancer from a patient perspective. Descriptive, qualitative. Community setting. 10 men with prostate cancer aged 62-70 years. A hermeneutic phenomenologic method using semistructured, open-ended questions addressing the lived experience. Phenomenology of praxis proposed by van Manen guided the data analysis and transformed personal experiences into disciplinary understanding. The use of van Manen's method of inquiry and analysis has contributed to the findings of the study by providing a way to explore the meaning of the lived experiences in an attempt to understand living with prostate cancer. Several themes were identified: living in the unknown, yearning to understand and know, struggling with unreliability of body, bearing the diagnosis of cancer, shifting priorities in the gap, and feeling comfort in the presence of others. Oncology nurses can use van Manen's four fundamental existentials-lived space (spatiality), lived body (corporeality), lived time (temporality), and lived other (relationality)-to understand the lived experience of prostate cancer. Nurses have many opportunities to impact the lives of men diagnosed with prostate cancer, including diagnosis, management of physical integrity, management of psychosocial integrity, and providing education. Nurses may encourage men to describe their diagnosis story and illness experience to better understand the meaning of the prostate cancer experience and to provide appropriate nursing care.

Personal growth during the experience of advanced cancer: a systematic review.

PubMed

Moreno, Patricia I; Stanton, Annette L

2013-01-01

Over the past decade, research has documented the positive consequences individuals attribute to the experience of traumatic, life-threatening events, including enhanced life appreciation, improved social relationships, and a deepened sense of self and meaning. Despite evidence that individuals with cancer frequently perceive growth as a result of their experience, personal growth in the context of advanced cancer has received markedly less attention. In light of the unique challenges accompanying the experience of advanced cancer, the phenomenon of perceiving positive consequences and making meaning of the cancer experience (i.e., personal growth) may be distinct in patients with life-limiting disease as compared with more commonly studied early-stage cancer survivor samples. The purpose of this article was to review studies examining personal growth in adults diagnosed with advanced cancer to encourage medical professionals to consider and respond to their concerns around meaning within palliative care. We conducted a systematic review of the PubMed and PsycINFO electronic databases for studies examining personal growth in patients with advanced cancer published between January 1960 and January 2013. Of the 197 studies reviewed, 12 quantitative studies and 10 qualitative studies met criteria for inclusion. The review revealed that many patients with advanced cancer both cite finding meaning at the end of life as important and perceive positive consequences as a result of their experience. In comparison to early-stage cancer or benign disease, advanced cancer may serve to prompt higher levels of personal growth. However, these findings are mixed and may indicate a complex, nonlinear relationship between cancer prognosis and personal growth. The most promising candidates for promoting personal growth during advanced disease include younger adult age, spirituality, and psychosocial resources (optimism, marriage, and social support from close others and health care

Development and testing of a text-mining approach to analyse patients' comments on their experiences of colorectal cancer care.

PubMed

Wagland, Richard; Recio-Saucedo, Alejandra; Simon, Michael; Bracher, Michael; Hunt, Katherine; Foster, Claire; Downing, Amy; Glaser, Adam; Corner, Jessica

2016-08-01

Quality of cancer care may greatly impact on patients' health-related quality of life (HRQoL). Free-text responses to patient-reported outcome measures (PROMs) provide rich data but analysis is time and resource-intensive. This study developed and tested a learning-based text-mining approach to facilitate analysis of patients' experiences of care and develop an explanatory model illustrating impact on HRQoL. Respondents to a population-based survey of colorectal cancer survivors provided free-text comments regarding their experience of living with and beyond cancer. An existing coding framework was tested and adapted, which informed learning-based text mining of the data. Machine-learning algorithms were trained to identify comments relating to patients' specific experiences of service quality, which were verified by manual qualitative analysis. Comparisons between coded retrieved comments and a HRQoL measure (EQ5D) were explored. The survey response rate was 63.3% (21 802/34 467), of which 25.8% (n=5634) participants provided free-text comments. Of retrieved comments on experiences of care (n=1688), over half (n=1045, 62%) described positive care experiences. Most negative experiences concerned a lack of post-treatment care (n=191, 11% of retrieved comments) and insufficient information concerning self-management strategies (n=135, 8%) or treatment side effects (n=160, 9%). Associations existed between HRQoL scores and coded algorithm-retrieved comments. Analysis indicated that the mechanism by which service quality impacted on HRQoL was the extent to which services prevented or alleviated challenges associated with disease and treatment burdens. Learning-based text mining techniques were found useful and practical tools to identify specific free-text comments within a large dataset, facilitating resource-efficient qualitative analysis. This method should be considered for future PROM analysis to inform policy and practice. Study findings indicated that

Patients' and urologists' preferences for prostate cancer treatment: a discrete choice experiment

PubMed Central

de Bekker-Grob, E W; Bliemer, M C J; Donkers, B; Essink-Bot, M-L; Korfage, I J; Roobol, M J; Bangma, C H; Steyerberg, E W

2013-01-01

Background: Patients' preferences are important for shared decision making. Therefore, we investigated patients' and urologists' preferences for treatment alternatives for early prostate cancer (PC). Methods: A discrete choice experiment was conducted among 150 patients who were waiting for their biopsy results, and 150 urologists. Regression analysis was used to determine patients' and urologists' stated preferences using scenarios based on PC treatment modality (radiotherapy, surgery, and active surveillance (AS)), and risks of urinary incontinence and erectile dysfunction. Results: The response rate was 110 out of 150 (73%) for patients and 50 out of 150 (33%) for urologists. Risk of urinary incontinence was an important determinant of both patients' and urologists' stated preferences for PC treatment (P<0.05). Treatment modality also influenced patients' stated preferences (P<0.05), whereas the risk of erectile dysfunction due to radiotherapy was mainly important to urologists (P<0.05). Both patients and urologists preferred AS to radical treatment, with the exception of patients with anxious/depressed feelings who preferred radical treatment to AS. Conclusion: Although patients and urologists generally may prefer similar treatments for PC, they showed different trade-offs between various specific treatment aspects. This implies that urologists need to be aware of potential differences compared with the patient's perspective on treatment decisions in shared decision making on PC treatment. PMID:23860533

Capturing the Patient’s Experience: Using Qualitative Methods to Develop a Measure of Patient-Reported Symptom Burden: An Example from Ovarian Cancer

PubMed Central

Williams, Loretta A.; Agarwal, Sonika; Bodurka, Diane C.; Saleeba, Angele K.; Sun, Charlotte C.; Cleeland, Charles S.

2013-01-01

Context Experts in patient-reported outcome (PRO) measurement emphasize the importance of including patient input in the development of PRO measures. Although best methods for acquiring this input are not yet identified, patient input early in instrument development ensures that instrument content captures information most important and relevant to patients in understandable terms. Objectives The M. D. Anderson Symptom Inventory (MDASI) is a reliable, valid PRO instrument for assessing cancer symptom burden. We report a qualitative (open-ended, in-depth) interviewing method that can be used to incorporate patient input into PRO symptom measure development, with our experience in constructing a MDASI module for ovarian cancer (MDASI-OC) as a model. Methods Fourteen patients with ovarian cancer (OC) described symptoms experienced at the time of the study, at diagnosis, and during prior treatments. Researchers and clinicians used content analysis of interview transcripts to identify symptoms in patient language. Symptoms were ranked on the basis of the number of patients mentioning them and by clinician assessment of relevance. Results Forty-two symptoms were mentioned. Eight OC-specific items will be added to the 13 core symptom items and six interference items of the MDASI in a test version of the MDASI-OC based on the number of patients mentioning them and clinician assessment of importance. The test version is undergoing psychometric evaluation. Conclusion The qualitative interviewing process, used to develop the test MDASI-OC, systematically captures common symptoms important to patients with ovarian cancer. This methodology incorporates the patient experience recommended by experts in PRO instrument development. PMID:23615044

Experiences With a Self-Reported Mobile Phone-Based System Among Patients With Colorectal Cancer: A Qualitative Study.

PubMed

Drott, Jenny; Vilhelmsson, Maria; Kjellgren, Karin; Berterö, Carina

2016-06-09

In cancer care, mobile phone-based systems are becoming more widely used in the assessment, monitoring, and management of side effects. To explore the experiences of patients with colorectal cancer on using a mobile phone-based system for reporting neurotoxic side effects. Eleven patients were interviewed (ages 44-68 years). A semistructured interview guide was used to perform telephone interviews. The interviews were transcribed verbatim and analyzed with qualitative content analysis. The patients' experiences of using a mobile phone-based system were identified and constructed as: "being involved," "pacing oneself," and "managing the questions." "Being involved" refers to their individual feelings. Patients were participating in their own care by being observant of the side effects they were experiencing. They were aware that the answers they gave were monitored in real time and taken into account by health care professionals when planning further treatment. "Pacing oneself" describes how the patients can have an impact on the time and place they choose to answer the questions. Answering the questionnaire was easy, and despite the substantial number of questions, it was quickly completed. "Managing the questions" pointed out that the patients needed to be observant because of the construction of the questions. They could not routinely answer all the questions. Patients understood that side effects can vary during the cycles of treatment and need to be assessed repeatedly during treatment. This mobile phone-based system reinforced the patients' feeling of involvement in their own care. The patients were comfortable with the technology and appreciated that the system was not time consuming.

Cancer patients' attitudes and experiences of online access to their electronic medical records: A qualitative study.

PubMed

Rexhepi, Hanife; Åhlfeldt, Rose-Mharie; Cajander, Åsa; Huvila, Isto

2018-06-01

Patients' access to their online medical records serves as one of the cornerstones in the efforts to increase patient engagement and improve healthcare outcomes. The aim of this article is to provide in-depth understanding of cancer patients' attitudes and experiences of online medical records, as well as an increased understanding of the complexities of developing and launching e-Health services. The study result confirms that online access can help patients prepare for doctor visits and to understand their medical issues. In contrast to the fears of many physicians, the study shows that online access to medical records did not generate substantial anxiety, concerns or increased phone calls to the hospital.

Pre-referral GP consultations in patients subsequently diagnosed with rarer cancers: a study of patient-reported data.

PubMed

Mendonca, Silvia C; Abel, Gary A; Lyratzopoulos, Georgios

2016-03-01

Some patients with cancer experience multiple pre-diagnostic consultations in primary care, leading to longer time intervals to specialist investigations and diagnosis. Patients with rarer cancers are thought to be at higher risk of such events, but concrete evidence of this is lacking. To examine the frequency and predictors of repeat consultations with GPs in patients with rarer cancers. Patient-reported data on pre-referral consultations from three English national surveys of patients with cancer (2010, 2013, and 2014), pooled to maximise the sample size of rarer cancers. The authors examined the frequency and crude and adjusted odds ratios for ≥3 (versus 1-2) pre-referral consultations by age, sex, ethnicity, level of deprivation, and cancer diagnosis (38 diagnosis groups, including 12 rarer cancers without prior relevant evidence). Among 7838 patients with 12 rarer cancers, crude proportions of patients with ≥3 pre-referral consultations ranged from >30.0% to 60.0% for patients with small intestine, bone sarcoma, liver, gallbladder, cancer of unknown primary, soft-tissue sarcoma, and ureteric cancer. The range was 15.0-30.0% for patients with oropharyngeal, anal, parotid, penile, and oral cancer. The overall proportion of responders with any cancer who had ≥3 consultations was 23.4%. Multivariable logistic regression indicated concordant patterns, with strong evidence for variation between rarer cancers (P <0.001). Patients with rarer cancers experience pre-referral consultations at frequencies suggestive of middle-to-high diagnostic difficulty. The findings can guide the development of new diagnostic interventions and 'safety-netting' approaches for symptomatic presentations encountered in patients with rarer cancers. © British Journal of General Practice 2016.

Pre-referral GP consultations in patients subsequently diagnosed with rarer cancers: a study of patient-reported data

PubMed Central

Mendonca, Silvia C; Abel, Gary A; Lyratzopoulos, Georgios

2016-01-01

Background Some patients with cancer experience multiple pre-diagnostic consultations in primary care, leading to longer time intervals to specialist investigations and diagnosis. Patients with rarer cancers are thought to be at higher risk of such events, but concrete evidence of this is lacking. Aim To examine the frequency and predictors of repeat consultations with GPs in patients with rarer cancers. Design and setting Patient-reported data on pre-referral consultations from three English national surveys of patients with cancer (2010, 2013, and 2014), pooled to maximise the sample size of rarer cancers. Method The authors examined the frequency and crude and adjusted odds ratios for ≥3 (versus 1–2) pre-referral consultations by age, sex, ethnicity, level of deprivation, and cancer diagnosis (38 diagnosis groups, including 12 rarer cancers without prior relevant evidence). Results Among 7838 patients with 12 rarer cancers, crude proportions of patients with ≥3 pre-referral consultations ranged from >30.0% to 60.0% for patients with small intestine, bone sarcoma, liver, gallbladder, cancer of unknown primary, soft-tissue sarcoma, and ureteric cancer. The range was 15.0–30.0% for patients with oropharyngeal, anal, parotid, penile, and oral cancer. The overall proportion of responders with any cancer who had ≥3 consultations was 23.4%. Multivariable logistic regression indicated concordant patterns, with strong evidence for variation between rarer cancers (P <0.001). Conclusion Patients with rarer cancers experience pre-referral consultations at frequencies suggestive of middle-to-high diagnostic difficulty. The findings can guide the development of new diagnostic interventions and ‘safety-netting’ approaches for symptomatic presentations encountered in patients with rarer cancers. PMID:26917657

Hospital care following emergency admission: a critical incident case study of the experiences of patients with advanced lung cancer and Chronic Obstructive Pulmonary Disease.

PubMed

Bailey, Cara; Hewison, Alistair; Karasouli, Eleni; Staniszewska, Sophie; Munday, Daniel

2016-08-01

To explore the experiences of patients with advanced Chronic Obstructive Pulmonary Disease (COPD) and lung cancer, their carers and healthcare professionals following emergency admission to acute care hospital. Emergency admissions of people with lung cancer and COPD have increased and there is global concern about the number of patients who die in hospital. The experience of patients with advanced lung cancer and COPD admitted to hospital as an emergency when nearing the end of life has not previously been investigated. Qualitative critical incident case study. Semistructured interviews were conducted with 39 patients (15 with COPD and 24 with lung cancer), 20 informal carers and 50 healthcare professionals, exploring patients' experiences of emergency hospital admission. Interviews took place after admission and following discharge. Participants nominated relatives and healthcare professionals for interview. Data were analysed thematically. Patients were satisfied with their 'emergency' care but not the care they received once their initial symptoms had been stabilised. The poorer quality care they experienced was characterised by a lack of attention to their fundamental needs, lack of involvement of the family, poor communication about care plans and a lack of continuity between primary and secondary care. A conceptual model of 'spectacular' and 'subtacular' trajectories of care was used to relate the findings to the wider context of health care provision. The complex nature of illness for patients with advanced respiratory disease makes emergency hospital admissions likely. Whilst patients (with COPD and lung cancer) were satisfied with care in the acute 'spectacular' phase of their admission, more attention needs to be given to the continuing care needs of patients in the 'subtacular' phase. This is the first study to explore the patient experience of acute care following an emergency admission and identifies where there is potential for care to be improved. �

Using patients’ experiences to identify priorities for quality improvement in breast cancer care: patient narratives, surveys or both?

PubMed Central

2012-01-01

Background Patients’ experiences have become central to assessing the performance of healthcare systems worldwide and are increasingly being used to inform quality improvement processes. This paper explores the relative value of surveys and detailed patient narratives in identifying priorities for improving breast cancer services as part of a quality improvement process. Methods One dataset was collected using a narrative interview approach, (n = 13) and the other using a postal survey (n = 82). Datasets were analyzed separately and then compared to determine whether similar priorities for improving patient experiences were identified. Results There were both similarities and differences in the improvement priorities arising from each approach. Day surgery was specifically identified as a priority in the narrative dataset but included in the survey recommendations only as part of a broader priority around improving inpatient experience. Both datasets identified appointment systems, patients spending enough time with staff, information about treatment and side effects and more information at the end of treatment as priorities. The specific priorities identified by the narrative interviews commonly related to ‘relational’ aspects of patient experience. Those identified by the survey typically related to more ‘functional’ aspects and were not always sufficiently detailed to identify specific improvement actions. Conclusions Our analysis suggests that whilst local survey data may act as a screening tool to identify potential problems within the breast cancer service, they do not always provide sufficient detail of what to do to improve that service. These findings may have wider applicability in other services. We recommend using an initial preliminary survey, with better use of survey open comments, followed by an in-depth qualitative analysis to help deliver improvements to relational and functional aspects of patient experience. PMID:22913525

Ethnic variation in cancer patients' ratings of information provision, communication and overall care.

PubMed

Trenchard, Lorna; Mc Grath-Lone, Louise; Ward, Helen

2016-10-01

Ethnic inequalities in cancer patient experience exist but variation within broad ethnic categories is under-explored. This study aimed to describe variation by ethnic sub-category in experiences of information provision and communication (key domains of patient experience) using National Cancer Patient Experience Survey (NCPES) data. The NCPES 2012-2013 contained responses from 68,737 cancer patients treated at 155 NHS Trusts in England. Multivariate logistic regression was used to investigate associations between ethnicity and patients' ratings of overall care, information provision and communication. Variation by and within broad ethnic categories was evident. Non-White patients (particularly Asian patients (ORadj:0.78; 95%CI:0.67-0.90, p=0.001)) were less likely than White patients to receive an understandable explanation of treatment side effects. Among Asian patients, those of Bangladeshi ethnicity were least likely to receive an understandable explanation. Effective communication and information provision are important to ensure patients are well informed, receive the best possible care and have a positive patient experience. However, ethnic inequalities exist in cancer patients' experiences of information provision and communication with variation evident both between and within broad ethnic categories. Further work to understand the causes of this variation is required to address ethnic inequalities at practice and policy level.

Positive patient experiences in an Australian integrative oncology centre.

PubMed

Furzer, Bonnie J; Petterson, Anna S; Wright, Kemi E; Wallman, Karen E; Ackland, Timothy R; Joske, David J L

2014-05-14

The purpose of this study was to explore the experiences of cancer patients' utilising complementary and integrative therapies (CIT) within integrative oncology centres across Western Australia. Across four locations 135 patients accessed CIT services whilst undergoing outpatient medical treatment for cancer. Of the 135 patients, 66 (61±12 y; female n=45; male n=21) agreed to complete a personal accounts questionnaire consisting of open-ended questions designed to explore patients' perceptions of CIT. All results were transcribed into nVivo (v9) and using thematic analysis, key themes were identified. Of the 66 participants, 100% indicated they would "recommend complementary therapies to other patients" and 92% stated "CIT would play a significant role in their future lifestyle". A mean score of 8±1 indicated an improvement in participants' perception of wellbeing following a CIT session. Three central themes were identified: empowerment, support and relaxation. Fourteen sub-themes were identified, with all themes clustered into a framework of multifaceted views held by cancer patients in relation to wellbeing, role of significant others and control. Exploration of patients' experiences reveals uniformly positive results. One of the key merits of the environment created within the centres is patients are able to work through their cancer journey with an increased sense of empowerment, without placing them in opposition to conventional medical treatment. In order to effectively target integrative support services it is crucial to explore the experiences of patients in their own words and use those forms of expression to drive service delivery.

Male caregivers of patients with breast and gynecologic cancer: experiences from caring for their spouses and partners.

PubMed

Lopez, Violeta; Copp, Gina; Molassiotis, Alexander

2012-01-01

There is considerable evidence demonstrating the negative effects of caregiving particularly in the areas of psychological well-being and quality of life of family caregivers of patients with cancer. However, there is little work on male caregivers' subjective experience of caring for family members with cancer, and little is known on how caregivers experience the caring over time. The objective of the study was to explore male spouses'/partners' experience of caring for their wives/partners with breast and gynecologic cancer over a 1-year period. An exploratory longitudinal qualitative descriptive design using face-to-face interviews of 15 spouses/partners was used in this study. Content analysis of the transcribed data was conducted to extract significant categories and themes. Varying degrees of interrelated cognitive, physical, and psychological impact were experienced by caregivers that extended to 12 months. Gender-specific attitudes prevented male caregivers from supporting their own self. Male caregivers dealt with problems that arose in the caregiving congruent with their masculinity, such as minimizing disruptions, focusing on tasks, and keeping their own stress to themselves. Male caregivers as a separate group with their own needs have not received much attention in the cancer literature, and their concerns and challenges may differ from those of female caregivers. Male caregivers' concerns and challenges must be taken into consideration when planning appropriate interventions to support them in their caregiving role.

Pain coping behaviors of saudi patients suffering from advanced cancer: a revisited experience.

PubMed

Babgi, Amani A

2010-01-01

Cancer is one of the major health problems throughout the world. The number of cancer patients is increasing, out of the estimated nine million new cancer cases every year, more than half are in developing countries. The majority of these patients are incurable by the time their disease is diagnosed. Therefore, cancer mortality is expected to continue to rise in those regions of the world (WHO, 2002). In Saudi Arabia, the latest report from the Saudi Cancer Registry SCR for 2004 registered 9,381 new cases, of these cases 7,138 were Saudis. The crude incidence rate CIR of all cancers among Saudis was 41.9/100,000. The total number of adult cancer incidence cases reported was 8595, and for children were 713 cases (NCR, 2004). The most common feared symptom encountered in advanced cancer is pain. Through their perpetual encounter with pain, advanced cancer patients usually maintain different coping behaviors. Internationally speaking, there are limited researches and investigations that deal with cancer pain, and the importance of using adaptive coping behaviors to control it. In Saudi Arabia, specifically, pain coping behaviors has never been assessed or discussed before, so is the impact of cancer pain on the quality of life. The presence of any maladaptive coping behaviors with cancer pain will interfere with the patient's life style and their quality of life, and will affect the nurse's role in caring, planning, and implementing effective nursing interventions to reduce and control cancer patient's pain. A descriptive design was used for this study to assess the pain coping behavior Among Saudi patients suffering from advanced cancer. The study was conducted at the two tumor centers which deal with cancer patients in Jeddah City. A convenient sample of 132 patients with advanced cancer who were returning to the clinics, radiation therapy and medical oncology departments of the aforementioned tumor centers were included in the study. Data were collected by an

How cancer survivors experience their changed body encountering others.

PubMed

Rasmussen, Dorte Malig; Hansen, Helle Ploug; Elverdam, Beth

2010-04-01

Psychosocial cancer research illustrates how women treated for breast cancer experience physical changes in their bodies and the way they perceive, that, others see their body. But how patients with other types of cancer have experienced changes in their bodies and how this affects their relationship with others is less researched. To explore how cancer survivors with different types of cancer and cancer treatment, experience and handle their changed body, especially when meeting others, and how this influences their everyday life of survivorship, i.e. long after treatment has been completed. Participant observation at a Cancer Rehabilitation Centre (CRC). Of the observed participants 23 were selected and interviewed twice. Many participants had a changed body due to the cancer and its treatment. When the cancer survivors meet others they experience that their changed body means that they are avoided, looked at in specific ways, or greeted with a specific compliment. The verbal and nonverbal language that the cancer survivors are met with indicates the existence of a specific discursive aesthetic in relation to the disease and the changed body. This discursive aesthetic represents a silence and secrecy about cancer, which makes it impossible for survivors to talk about their experiences with cancer and a changed body. The changed body not only represents the physical sign of cancer, it also represents the social presence and representation of cancer. The analysis gives an insight into general questions of meaning related to the changed body in late modernity. Copyright (c) 2009 Elsevier Ltd. All rights reserved.

The Lived Experience of Head and Neck Cancer Patients Receiving Curative Radiotherapy: A Systematic Review and Meta-Ethnography.

PubMed

Fitchett, Russell C; Aldus, Edward J; Fitchett, Lucy R; Cross, Jane

2018-06-08

This review aims to explore, appraise and synthesise the existing evidence of the meaning that head and neck cancer (HNC) patients assign to the experience of receiving curative radiotherapy. Qualitative evidence synthesis was undertaken using meta-ethnography. Published literature was identified using seven databases: AMED, ASSIA, CINAHL, EMBASE, MEDLINE, PubMed and PsycINFO. Databases were searched from January 2005 to April 2017. The strategy was supplemented by grey literature and citation searches. Out of 1403 titles, 57 abstracts and 35 full texts were screened. Ultimately, 8 studies were eligible for inclusion. The evidence base was moderate to strong in quality. Most of the studies showed that HNC patients undergoing radiotherapy have unmet needs. Four related concepts were identified: the disruption to life that the disease and radiotherapy treatment cause; patients' feelings of isolation; the need for patients to make sense of their situation; and the waiting and uncertainty that radiotherapy creates. The current literature suggests that both head and neck cancer and radiotherapy cause disruption in patients' lives. Radiotherapy causes many unpleasant side effects, and in this difficult treatment period, HNC patients feel isolated, uncertain and in need of coping strategies. Therapy radiographers are ideally placed to offer a supportive relationship. By having a deeper understanding of patients' lived experience, radiographers may form stronger relationships and more effectively help patients through their radiotherapy. This article is protected by copyright. All rights reserved.

Brain metastases in patients diagnosed with a solid primary cancer during childhood: experience from a single referral cancer center.

PubMed

Suki, Dima; Khoury Abdulla, Rami; Ding, Minming; Khatua, Soumen; Sawaya, Raymond

2014-10-01

Metastasis to the brain is frequent in adult cancer patients but rare among children. Advances in primary tumor treatment and the associated prolonged survival are said to have increased the frequency of brain metastasis in children. The authors present a series of cases of brain metastases in children diagnosed with a solid primary cancer, evaluate brain metastasis trends, and describe tumor type, patterns of occurrence, and prognosis. Patients with brain metastases whose primary cancer was diagnosed during childhood were identified in the 1990-2012 Tumor Registry at The University of Texas M.D. Anderson Cancer Center. A review of their hospital records provided demographic data, history, and clinical data, including primary cancer sites, number and location of brain metastases, sites of extracranial metastases, treatments, and outcomes. Fifty-four pediatric patients (1.4%) had a brain metastasis from a solid primary tumor. Sarcomas were the most common (54%), followed by melanoma (15%). The patients' median ages at diagnosis of the primary cancer and the brain metastasis were 11.37 years and 15.03 years, respectively. The primary cancer was localized at diagnosis in 48% of patients and disseminated regionally in only 14%. The primary tumor and brain metastasis presented synchronously in 15% of patients, and other extracranial metastases were present when the primary cancer was diagnosed. The remaining patients were diagnosed with brain metastasis after initiation of primary cancer treatment, with a median presentation interval of 17 months after primary cancer diagnosis (range 2-77 months). At the time of diagnosis, the brain metastasis was the first site of systemic metastasis in only 4 (8%) of the 51 patients for whom data were available. Up to 70% of patients had lung metastases when brain metastases were found. Symptoms led to the brain metastasis diagnosis in 65% of cases. Brain metastases were single in 60% of cases and multiple in 35%; 6% had only

The impact of language barriers and immigration status on the care experience for Spanish-speaking caregivers of patients with pediatric cancer.

PubMed

Zamora, Eduardo R; Kaul, Sapna; Kirchhoff, Anne C; Gwilliam, Vannina; Jimenez, Ornella A; Morreall, Deborah K; Montenegro, Roberto E; Kinney, Anita Y; Fluchel, Mark N

2016-12-01

An increasing proportion of pediatric cancer patients in the United States are Latino and many have Spanish-speaking immigrant parents with limited English proficiency (LEP). Little is known about how language or undocumented immigration status impacts their care experience. A cross-sectional survey was administered to English (N = 310) and Spanish-speaking LEP (N = 56) caregivers of pediatric cancer patients. To assess differences in healthcare experiences between the language groups, t-tests and chi-square statistics were used. Multivariable logistic regression evaluated associations between primary language and knowledge of clinical trial status. Spanish-speaking caregivers were more likely to report higher rates of quitting or changing jobs as a direct result of their child's cancer, and their children were more likely to experience a delay in education. Although Spanish-speaking caregivers reported higher satisfaction with care, 32% reported feeling that their child would have received better care if English was their primary language. Spanish-speaking caregivers were more likely to incorrectly identify whether their child was on a clinical trial compared with English-speaking caregivers. The majority of Spanish-speaking caregivers reported at least one undocumented caregiver in the household and 11% of them avoided or delayed medical care for their child due to concerns over their undocumented immigration status. Language barriers and undocumented immigration status may negatively impact the quality of informed decision-making and the care experience for Spanish-speaking LEP caregivers of pediatric cancer patients. These families may benefit from culturally appropriate Spanish language resources to improve communication and open a dialogue regarding undocumented immigration status. © 2016 Wiley Periodicals, Inc.

Cancer's Margins: Trans* and Gender Nonconforming People's Access to Knowledge, Experiences of Cancer Health, and Decision-Making

PubMed Central

Bryson, Mary K.

2016-01-01

Abstract Purpose: Research in Canada and the United States indicates that minority gender and sexuality status are consistently associated with health disparities and poor health outcomes, including cancer health. This article investigates experiences of cancer health and care, and access to knowledge for trans* and gender nonconforming people diagnosed with and treated for breast and/or gynecologic cancer. Our study contributes new understandings about gender minority populations that will advance knowledge concerning the provision of culturally appropriate care. This is the first study we are aware of that focuses on trans* and gender nonconforming peoples' experiences of cancer care and treatment, support networks, and access to and mobilization of knowledge. Methods: This article analyzes trans* and gender nonconforming patient interviews from the Cancer's Margins project (www.lgbtcancer.ca): Canada's first nationally-funded project that investigates the complex intersections of sexual and/or gender marginality, cancer knowledge, treatment experiences, and modes of the organization of support networks. Results: Our analysis documents how different bodies of knowledge relative to cancer treatment and gendered embodiment are understood, accessed, and mobilized by trans* and gender nonconforming patients. Findings reported here suggest that one's knowledge of a felt sense of gender is closely interwoven with knowledge concerning cancer treatment practices; a dynamic which organizes knowledge mobilities in cancer treatment. Conclusions: The findings support the assertion that cisgender models concerning changes to the body that occur as a result of biomedical treatment for breast and/or gynecologic cancer are wholly inadequate in order to account for trans* and gender nonconforming peoples' experiences of cancer treatments, and access to and mobilization of related knowledge. PMID:26789402

Cancer and serious mental illness--patient, caregiver and professional perspectives: study protocol.

PubMed

Millman, James; Galway, Karen; Santin, Olinda; Reid, Joanne

2016-01-01

To explore the experience of serious mental illness and cancer from the perspective of patients, significant others and healthcare professionals involved in their care. Serious mental illness is associated with poorer cancer outcomes. Those suffering from this comorbidity receive fewer specialist interventions and die earlier than the general population. Prior qualitative research in this area has comprised of a single study focussing on healthcare professionals and there is little evidence regarding the experiences of patients and caregivers. A qualitative exploration using approximately 36 semi-structured interviews. Semi-structured digitally recorded interviews conducted with: adults living with serious mental illness and diagnosed with cancer; those providing them with informal support and care; and healthcare professionals. Questions will focus on the experience of having cancer and serious mental illness or caring for someone with this comorbidity, experiences of healthcare and priorities for patients and carers. Framework analysis will be used. Research Ethics Committee and Trust Research & Development approval was obtained. A steering group comprising six people with experience of either cancer or mental illness provided feedback and ratified the patient information sheets and interview schedules. There is a paucity of research addressing stakeholder perspectives on the experience of cancer and of cancer services for people with serious mental illness. Dissemination of findings will inform practice relating to the care of an often neglected population, informing better support for their significant others and the professionals involved in their care. © 2015 John Wiley & Sons Ltd.

Depression and end-of-life care for patients with cancer

PubMed Central

Rosenstein, Donald L.

2011-01-01

Patients with cancer and depression experience more physical symptoms, have poorer quality of life, and are more likely to have suicidal thoughts or a desire for hastened death than are cancer patients who are not depressed. Despite the ubiquity of depressive symptoms in cancer patients at the end of life, critical questions remain unanswered with respect to etiopathogenesis, diagnosis, and treatment of depression in these vulnerable patients. The pharmacotherapy of depression in patients with advanced cancer should be guided by a palliative care approach focused on symptom reduction, irrespective of whether the patient meets diagnostic criteria for major depression. Earlier and more intensive supportive care for patients with cancer reduces symptom burden and may prolong life for patients with advanced disease. Symptom-oriented clinical trials are needed to improve end-of-life cancer care. PMID:21485750

Psychological aspects of the cancer patients' education: thoughts, feelings, behavior and body reactions of patients faced with diagnosis of cancer.

PubMed

Klikovac, T; Djurdjevic, A

2010-01-01

In order to assess the impact of cancer diagnosis on several psychological dimensions, this study was undertaken with the aim to understand, identify and document the psychological responses of cancer patients - their common thoughts, feelings, body sensations and behavior when they faced the cancer diagnosis. The sample consisted of 80 patients who attended psychological lectures during the implementation of the European Educational Programme (EEP) "Learning to live with cancer". At the beginning of the lectures, the patients were asked to fulfill the self-describing questionnaire with 4 open questions: "Describe your common thoughts, feelings, behavior, and body reactions in the first 6 weeks when you learned that you were affected by cancer". A significant proportion of patients reported disease denial (65%) and reexamination in relation to past life experiences, stressful events and bad habits (60%). Depressive feelings and disappointment were reported by 90% of the patients, while 85% of them reported fear, hopelessness and emptiness. They also reported sadness (70%), anger and anxiety (65%), nervousness and irritability (90%). Positive thoughts and attitude in the sense of optimism concerning a successful treatment outcome were reported by 20% and 15% of patients, respectively. The diagnosis of cancer and cancer treatment can cause distress, emotional turmoil and different psychosocial disorders. Taking into consideration different psychological reactions of cancer patients can be helpful for organizing adequate psycho-educational and psychosocial support, and psychotherapy for cancer patients and their families.

Radiotherapy setup displacements in breast cancer patients: 3D surface imaging experience.

PubMed

Cravo Sá, Ana; Fermento, Ana; Neves, Dalila; Ferreira, Sara; Silva, Teresa; Marques Coelho, Carina; Vaandering, Aude; Roma, Ana; Quaresma, Sérgio; Bonnarens, Emmanuel

2018-01-01

In this study, we intend to compare two different setup procedures for female breast cancer patients. Imaging in radiotherapy provides a precise localization of the tumour, increasing the accuracy of the treatment delivery in breast cancer. Twenty breast cancer patients who underwent whole breast radiotherapy (WBRT) were selected for this study. Patients were divided into two groups of ten. Group one (G1) was positioned by tattoos and then the patient positioning was adjusted with the aid of AlignRT (Vision RT, London, UK). In group two (G2), patients were positioned only by tattoos. For both groups, the first 15 fractions were analyzed, a daily kilovoltage (kV) cone beam computed tomography (CBCT) image was made and then the rotational and translational displacements and, posteriorly, the systematic ( Σ ) and random ( σ ) errors were analyzed. The comparison of CBCT displacements for the two groups showed a statistically significant difference in the translational left-right (LR) direction ( ρ  = 0.03), considering that the procedure with AlignRT system has smaller lateral displacements. The results of systematic ( Σ ) and random ( σ ) errors showed that for translational displacements the group positioned only by tattoos (G2) demonstrated higher values of errors when compared with the group positioned with the aid of AlignRT (G1). AlignRT could help the positioning of breast cancer patients; however, it should be used with another imaging method.

Experiences With a Self-Reported Mobile Phone-Based System Among Patients With Colorectal Cancer: A Qualitative Study

PubMed Central

2016-01-01

Background In cancer care, mobile phone-based systems are becoming more widely used in the assessment, monitoring, and management of side effects. Objective To explore the experiences of patients with colorectal cancer on using a mobile phone-based system for reporting neurotoxic side effects. Methods Eleven patients were interviewed (ages 44-68 years). A semistructured interview guide was used to perform telephone interviews. The interviews were transcribed verbatim and analyzed with qualitative content analysis. Results The patients' experiences of using a mobile phone-based system were identified and constructed as: “being involved,” “pacing oneself,” and “managing the questions.” “Being involved” refers to their individual feelings. Patients were participating in their own care by being observant of the side effects they were experiencing. They were aware that the answers they gave were monitored in real time and taken into account by health care professionals when planning further treatment. “Pacing oneself” describes how the patients can have an impact on the time and place they choose to answer the questions. Answering the questionnaire was easy, and despite the substantial number of questions, it was quickly completed. “Managing the questions” pointed out that the patients needed to be observant because of the construction of the questions. They could not routinely answer all the questions. Patients understood that side effects can vary during the cycles of treatment and need to be assessed repeatedly during treatment. Conclusions This mobile phone-based system reinforced the patients’ feeling of involvement in their own care. The patients were comfortable with the technology and appreciated that the system was not time consuming. PMID:27282257

Probiotic Survey in Cancer Patients Treated in the Outpatient Department in a Comprehensive Cancer Center.

PubMed

Ciernikova, Sona; Mego, Michal; Semanova, Maria; Wachsmannova, Lenka; Adamcikova, Zuzana; Stevurkova, Viola; Drgona, Lubos; Zajac, Vladimir

2017-06-01

Availability without prescription restriction, low cost, and simple oral administration allow cancer patients to use probiotics without knowledge of potential risks. We present a survey of probiotic use and the association with patient tumor characteristics in cancer patients treated at the outpatient department of the National Cancer Institute in Slovakia. Between March and December 2014, 499 patients were asked to evaluate their overall experience with probiotics by questionnaire form, including the length and method of use relative to anticancer therapy, expectations, side-effect experiences, understanding of the possible risks, dietary supplement use, and others. The relevant data were statistically evaluated. The cohort consisted of 323 women (64.7%) and 176 men (35.3%); 91.6% were undergoing chemotherapy (2.6% together with radiotherapy) and 8.4% had no anticancer therapy. The prevalence of probiotic use was 28.5% and only 12 patients using probiotics (8.5%) described negative side effects. Most patients declared consideration of probiotic use based on recommendation from a physician (37.3%) or a pharmacist (14.8%). Nevertheless, up to 86.6% of patients declared no knowledge of possible risks. Statistically significant correlation was found between probiotic use and age of patients (P < .008), gender (P < .023), and taking other dietary supplements (P < .000002). In this prospective study, we present for the first time the prevalence, side-effect experience, and aspects that most likely influence probiotic use in cancer patients. Minimal knowledge of risks underlines the importance of an active approach by oncologists to inform patients about probiotic safety.

A qualitative exploration of Malaysian cancer patients' perceptions of cancer screening.

PubMed

Farooqui, Maryam; Hassali, Mohamed Azmi; Knight, Aishah; Shafie, Asrul Akmal; Farooqui, Muhammad Aslam; Saleem, Fahad; Haq, Noman-ul; Aljadhey, Hisham

2013-01-18

Despite the existence of different screening methods, the response to cancer screening is poor among Malaysians. The current study aims to examine cancer patients' perceptions of cancer screening and early diagnosis. A qualitative methodology was used to collect in-depth information from cancer patients. After obtaining institutional ethical approval, patients with different types and stages of cancer from the three major ethnic groups (Malay, Chinese and Indian) were approached. Twenty semi-structured interviews were conducted. All interviews were audiotaped, transcribed verbatim, and translated into English for thematic content analysis. Thematic content analysis yielded four major themes: awareness of cancer screening, perceived benefits of cancer screening, perceived barriers to cancer screening, and cues to action. The majority of respondents had never heard of cancer screening before their diagnosis. Some participants reported hearing about mammogram and Pap smear tests but did not undergo screening due to a lack of belief in personal susceptibility. Those who had negative results from screening prior to diagnosis perceived such tests as untrustworthy. Lack of knowledge and financial constraints were reported as barriers to cancer screening. Finally, numerous suggestions were given to improve screening behaviour among healthy individuals, including the role of mass media in disseminating the message 'prevention is better than cure'. Patients' narratives revealed some significant issues that were in line with the Health Belief Model which could explain negative health behaviour. The description of the personal experiences of people with cancer could provide many cues to action for those who have never encountered this potentially deadly disease, if incorporated into health promotion activities.

Experiences and Expectations of Bereavement Contact among Caregivers of Patients with Advanced Cancer.

PubMed

Makarem, Maisam; Mohammed, Shan; Swami, Nadia; Pope, Ashley; Kevork, Nanor; Krzyzanowska, Monika; Rodin, Gary; Hannon, Breffni; Zimmermann, Camilla

2018-05-16

Contact with bereaved caregivers is not standard practice among cancer physicians, and little is known about its impact on caregivers. Our aim was to describe the experiences and opinions of caregivers regarding bereavement contact from healthcare providers (HCP). Semistructured qualitative interviews were conducted with 61 bereaved caregivers. Bereaved caregivers of advanced cancer patients who had completed a randomized controlled trial of an early palliative care intervention were approached one to five years after the patient's death. Caregivers completed qualitative interviews from April 2012 to March 2015 after completion of quantitative measures. In semistructured interviews, bereaved caregivers were asked to describe the contact they received from HCP after the patient's death and their opinions about bereavement contact. We used thematic analysis informed by grounded theory to code and analyze the data. Of 60 caregivers included in the study, 30 (50%) received bereavement contact. There were no thematic differences between trial arms. The themes "contact reflects caring," "contact offers support," and "contact facilitates closure" were prominent among those who were contacted. "Contact is a courtesy," "contact is not always necessary," and "caregiver-initiated contact" were most evident among those who were not contacted. Overall, contact was appreciated by those who received it; for those who did not, reactions included rationalization, ambivalence, and regret. No negative consequences of contact were reported. Bereavement contact is well received and may be missed if not provided. These data support integration of bereavement contact into routine supportive care for caregivers.

PET/MRI in cancer patients: first experiences and vision from Copenhagen.

PubMed

Kjær, Andreas; Loft, Annika; Law, Ian; Berthelsen, Anne Kiil; Borgwardt, Lise; Löfgren, Johan; Johnbeck, Camilla Bardram; Hansen, Adam Espe; Keller, Sune; Holm, Søren; Højgaard, Liselotte

2013-02-01

Combined PET/MRI systems are now commercially available and are expected to change the medical imaging field by providing combined anato-metabolic image information. We believe this will be of particular relevance in imaging of cancer patients. At the Department of Clinical Physiology, Nuclear Medicine & PET at Rigshospitalet in Copenhagen we installed an integrated PET/MRI in December 2011. Here, we describe our first clinical PET/MR cases and discuss some of the areas within oncology where we envision promising future application of integrated PET/MR imaging in clinical routine. Cases described include brain tumors, pediatric oncology as well as lung, abdominal and pelvic cancer. In general the cases show that PET/MRI performs well in all these types of cancer when compared to PET/CT. However, future large-scale clinical studies are needed to establish when to use PET/MRI. We envision that PET/MRI in oncology will prove to become a valuable addition to PET/CT in diagnosing, tailoring and monitoring cancer therapy in selected patient populations.

The content of hope in ambulatory patients with colon cancer.

PubMed

Beckman, Emily S; Helft, Paul R; Torke, Alexia M

2013-01-01

Although hope is a pervasive concept in cancer treatment, we know little about how ambulatory patients with cancer define or experience hope. We explored hope through semistructured interviews with ten patients with advanced (some curable, some incurable) colon cancer at one Midwestern, university-based cancer center. We conducted a thematic analysis to identify key concepts related to patient perceptions of hope. Although we did ask specifically about hope, patients also often revealed their hopes in response to indirect questions or by telling stories about their cancer experience. We identified four major themes related to hope: 1) hope is essential, 2) a change in perspective, 3) the content of hope, and 4) communicating about hope. The third theme, the content of hope, included three subthemes: a) the desire for normalcy, b) future plans, and c) hope for a cure. We conclude that hope is an essential concept for patients undergoing treatment for cancer as it pertains to their psychological well-being and quality of life, and hope for a cure is not and should not be the only consideration. In a clinical context, the exploration of patients' hopes and aspirations in light of their cancer diagnosis is important because it provides a frame for understanding their goals for treatment. Exploration of the content of patients' hope can not only help to illuminate misunderstandings but also clarify how potential treatments may or may not contribute to achieving patients' goals.

Intrapersonal and interpersonal dimensions of cancer perception: a confirmatory factor analysis of the cancer experience and efficacy scale (CEES).

PubMed

Hou, Wai Kai

2010-05-01

Sociocultural factors influence psychological adjustment to cancer in Asian patients in two major ways: prioritization of relationships over individual orientations and belief in the efficacy of interpersonal cooperation. We derived and validated among Chinese colorectal cancer (CRC) patients an instrument assessing cancer perceptions to enable the study of the sociocultural processes. Qualitative interviews (n = 16) derived 15 items addressing interpersonal experience in Chinese CRC patients' adjustment. These 15 items and 18 corresponding self-referent items were administered to 166 Chinese CRC survivors and subjected to exploratory factor analysis (EFA) to establish the initial scale structure and reliability. The final 29 items, together with other psychometric measures, were administered to a second cohort of 215 CRC patients and subjected to confirmatory factor analysis (CFA). EFA (63.35% of the total variance) extracted six factors: personal strain, socioeconomic strain, emotional strain, personal efficacy, collective efficacy, and proxy efficacy. CFA confirmed the psychometric structure [chi (2)(df) = 702.91(368); Comparative Fit Index = 0.95; Nonnormed Fit Index = 0.94; Incremental Fit Index = 0.95; standardized root mean square residual = 0.08] of the six factors by using a model with two latent factors: experience and efficacy. All subscales were reliable (alpha = 0.76-0.92). Appropriate correlations with adjustment outcomes (symptom distress, psychological morbidity, and subjective well-being), optimistic personalities, and social relational quality indicated its convergent and divergent validity. Known group comparisons (i.e., age, active treatment, and colostomy) showed its clinical utility. The cancer experience and efficacy scale is a valid multidimensional instrument for assessing intrapersonal and interpersonal dimensions of cancer experience in Asian patients, potentiating existing patient-reported outcome measures.

Patient, nursing and medical staff experiences and perceptions of the care of people with palliative esophagogastric cancer: a systematic review of the qualitative evidence.

PubMed

Cowley, Alison; Evans, Catrin; Bath-Hextall, Fiona; Cooper, Joanne

2016-10-01

Esophagogastric cancer is the fifth most common malignancy and its incidence is increasing. The disease progresses quickly and five-year survival rates are poor. Treatment with palliative intent is provided for the majority of patients but there remains a lack of empirical evidence on the most effective service models to support esophagogastric cancer patients. The overall objective of this systematic review was to synthesize the best available evidence on the experiences and perceptions of patients and health professionals with regard to the care of people diagnosed with palliative esophagogastric cancer. The review considered studies that included patients diagnosed with palliative esophagogastric cancer and any health professionals involved in the delivery of palliative care to this patient group in a hospital, home or community setting. The review considered studies that investigated the experiences and perceptions of people diagnosed with palliative esophagogastric cancer and staff working with these people. Studies that were carried out in any setting, including in-patient and outpatient areas, specialist cancer and non-specialist palliative care services and those were any patient were in receipt or had experiences of palliative care services were considered. All types of health practitioners delivering palliative care to esophagogastric cancer patients were considered. Studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research, feminist research and narrative approaches were considered. Mixed methods studies were considered in the review only if qualitative findings were reported separately. A three-step search strategy was utilized. A total 11 databases were searched for studies from 2000 onward, followed by hand searching of reference lists. Methodological quality was assessed using the Joanna Briggs Institute Qualitative Assessment and Review Instrument critical

Patterns of use of medical cannabis among Israeli cancer patients: a single institution experience.

PubMed

Waissengrin, Barliz; Urban, Damien; Leshem, Yasmin; Garty, Meital; Wolf, Ido

2015-02-01

The use of the cannabis plant (Cannabis sativa L.) for the palliative treatment of cancer patients has been legalized in multiple jurisdictions including Israel. Yet, not much is currently known regarding the efficacy and patterns of use of cannabis in this setting. To analyze the indications for the administration of cannabis among adult Israeli cancer patients and evaluate its efficacy. Efficacy and patterns of use of cannabis were evaluated using physician-completed application forms, medical files, and a detailed questionnaire in adult cancer patients treated at a single institution. Of approximately 17,000 cancer patients seen, 279 (<1.7%) received a permit for cannabis from an authorized institutional oncologist. The median age of cannabis users was 60 years (range 19-93 years), 160 (57%) were female, and 234 (84%) had metastatic disease. Of 151 (54%) patients alive at six months, 70 (46%) renewed their cannabis permit. Renewal was more common among younger patients and those with metastatic disease. Of 113 patients alive and using cannabis at one month, 69 (61%) responded to the detailed questionnaire. Improvement in pain, general well-being, appetite, and nausea were reported by 70%, 70%, 60%, and 50%, respectively. Side effects were mild and consisted mostly of fatigue and dizziness. Cannabis use is perceived as highly effective by some patients with advanced cancer and its administration can be regulated, even by local authorities. Additional studies are required to evaluate the efficacy of cannabis as part of the palliative treatment of cancer patients. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Taiwanese adult cancer patients' reports of using complementary therapies.

PubMed

Lu, Jui-Hua; Tsay, Shiow-Luan; Sung, Su-Ching

2010-01-01

More information is needed by cancer clinicians regarding cancer patients' use of complementary and alternative medicine (CAM). In this qualitative study, in-depth interviews were used to obtain the reports of adult cancer patients regarding their use of CAM. Seven cancer patients (4 women, 3 men) who reported using CAM were recruited by snowball sampling. Content analysis was used to examine the interview transcriptions. Five themes and multiple categories were identified related to CAM use: (1) facing the challenges of cancer (I can't be defeated, need to cooperate with conventional medical treatment, rebuilding my confidence), (2) handling the physical and psychological distress of CAM use (extra loading due to the therapy, uncertainty and fear about the efficacy of CAM, being understood and supported, feeling guilty about being sick, (3) lifestyle disruption (altering social life, changing family living style), (4) having reasons for seeking other therapies (finding a way to cure the disease, boosting my immunity, improving my overall health status, and prolonging life and searching for peace of mind), and (5) unresolved practical concerns about CAM (finding an easy and effective way to practice CAM, needing CAM to be integrated into mainstream health care, and where to get the related information). Adult Taiwanese cancer patients who use CAM do experience burdens secondary to CAM use and prefer that oncology specialists be more informed about CAM. Oncology specialists who know where adult cancer patients could obtain helpful information about CAM would help to decrease the burdens that patients who use CAM experience.

The Doctor-Patient Relationship and Information-Seeking Behavior: Four Orientations to Cancer Communication.

PubMed

Adamson, Matthew; Choi, Kelsey; Notaro, Stephen; Cotoc, Crina

2018-04-01

In cancer communication, patients and physicians often understand a patient's experience and situation differently. This can negatively impact health outcomes and the physician-patient relationship. To explore how cancer patients' interpretations of the physician's role as information giver affect the communication relationship with the physician and their information-seeking behavior regarding different aspects of their cancer care. Participants completed a semistructured qualitative interview addressing their treatment experience and communication with their physician. Interviews were coded and analyzed using inductive thematic analysis. Ten patients with cancer treated at a regional cancer center in central Illinois participated in the study. Cancer stages I to IV and 4 cancer types were represented. Participants' orientations to the relationship with their physician (and their information-seeking behavior) were classified into 4 general categories: (1) "questioners" have a general mistrust toward their physicians and the information doctors are giving; (2) "the undecided" focuses on physician "fit," often requiring time to step away in order to make decisions and process information; (3) "cross-checkers" are concerned with content of their treatment protocol, often double-checking the treatment plan; and (4) "the experience-oriented" feel a gap between their experience and their physician's experience (and perspective), often seeking information from other survivors. All categories described a perceived lack of adequate exchange of information and the need to seek information outside of the physician-patient relationship to compensate. Participants exhibited different information-seeking behaviors based on how they interpreted the role of their physician as information giver. This affected what kind of information they sought and how they understood the information received, which in turn affected understanding of their broader experience and care.

Brachytherapy in early prostate cancer--early experience.

PubMed

Jose, B O; Bailen, J L; Albrink, F H; Steinbock, G S; Cornett, M S; Benson, D C; Schmied, W K; Medley, R N; Spanos, W J; Paris, K J; Koerner, P D; Gatenby, R A; Wilson, D L; Meyer, R

1999-01-01

Use of brachytherapy with radioactive seeds in the management of early prostate cancer is commonly used in the United States. The early experience has been reported from the prostate treatment centers in Seattle for the last 10 years. In this manuscript we are reporting our early experience of 150 radioactive seed implantations in early stage prostate cancer using either Iodine 125 or Palladium 103 seeds. The average age of the patient is 66 years and the median Gleason score is 5.4 with a median PSA of 6. A brief description of the evolution of the treatment of prostate cancer as well as the preparation for the seed implantation using the volume study with ultrasound of the prostate, pubic arch study using CT scan of the pelvis and the complete planning using the treatment planning computers are discussed. We also have described the current technique which is used in our experience based on the Seattle guidelines. We plan a follow-up report with the results of the studies with longer follow-up.

Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK

PubMed Central

Errington, Julie; Malik, Ghada; Evans, Julie; Baston, Jenny; Parry, Annie; Price, Lisa; Johnstone, Hina; Peters, Selena; Oram, Victoria; Howe, Karen; Whiteley, Emma; Tunnacliffe, Jane

2016-01-01

Background While the majority of childhood cancer clinical trials are treatment related, additional optional research investigations may be carried out that do not directly impact on treatment. It is essential that these studies are conducted ethically and that the experiences of families participating in these studies are as positive as possible. Methods A questionnaire study was carried out to investigate the key factors that influence why families choose to participate in optional nontherapeutic research studies, the level of understanding of the trials involved, and the experiences of participation. Results A total of 100 participants from six UK centers were studied; 77 parents, 10 patients >16 years, and 13 patients aged 8–15 years. Ninety‐seven percent of parents and 90% of patients felt that information provided prior to study consent was of the right length, with 52% of parents and 65% of patients fully understanding the information provided. Seventy‐four percent of parents participated in research studies in order to “do something important”, while 74% of patients participated “to help medical staff”. Encouragingly, <5% of participants felt that their clinical care would be negatively affected if they did not participate. Positive aspects of participation included a perception of increased attention from medical staff. Negative aspects included spending longer periods in hospital and the requirement for additional blood samples. Ninety‐six percent of parents and 87% of patients would participate in future studies. Conclusions The study provides an insight into the views of childhood cancer patients and their parents participating in nontherapeutic clinical research studies. Overwhelmingly, the findings suggest that participation is seen as a positive experience. PMID:26928983

[Can cancer patient in terminal stage of cancer die with dignity at home? And under what conditions?].

PubMed

Slovácek, L; Simková, M; Petera, J; Filip, S

2011-01-01

In their brief communication, the authors are discussing the issue of palliative care for cancer patients in terminal stage of cancer. The authors are also contributing their own experience with the provision of such care to patients who wish to die at home.

Internet design preferences of patients with cancer.

PubMed

Chernecky, Cynthia; Macklin, Denise; Walter, Jennifer

2006-07-01

To describe computer experience and preferences for multimedia design. Prospective, descriptive. Physician office and outpatient cancer centers in an urban area in the southeastern United States. Convenience sample of 22 volunteer patients with cancer from four racial groups. A questionnaire on computer experiences was followed by a hands-on computer session with questions regarding preferences for seven interface items. Data termination occurred when sample size was obtained. Design of Internet education site for patients. Variables include preferences, computer, cancer, multimedia, and education. Eighty-two percent had personal computers, 41% used a computer daily, and 95% believed that computers would be a good avenue for learning about cancer care. Preferences included display colors in blue and green hues; colored buttons; easy-to-read text; graphics with a simple design and large, clear pictures; serif font in dark type; light-colored background; and larger photo size in a rectangle shape. Most popular graphic icons as metaphors were 911 for emergency, picture of skull and crossbones for danger, and a picture of a string on an index finger representing reminder. The simple layout most preferred for appearances was one that included text and pictures, read from left to right, and was symmetrical in its placement of pictures and text on the page. Preferences are necessary to maintain interest and support navigation through computer designs to enhance the translation of knowledge to patients. Development of multimedia based on patient preferences will enhance education, learning, and, ultimately, quality patient care.

[Touching cancer: shiatsu as complementary treatment to support cancer patients].

PubMed

Argash, Oz; Caspi, Opher

2008-01-01

In recent years there has been an increase in the interest of cancer patients in receiving complementary medicine therapies as supportive measures to cure the disease. In response, medical units that combine conventional and complementary medicine (integrative medicine) have been established in leading cancer centers worldwide. In Israel, a special integrative medicine unit that combines mind-body, Chinese medicine, nutrition, herbs, supplements, and manual therapies (such as shiatsu) before, during and after conventional anti-cancer therapies has been established as an integral part of the Davidoff Comprehensive Cancer Center in 2006. Shiatsu represents a group of manual therapeutic techniques, including acupressure. Shiatsu offers cancer patients a non-pharmacologic method to relieve symptoms and improve quality of life throughout the course of illness. Research indicates that acupressure is relatively effective and safe for common cancer-related symptoms such as nausea, vomiting and insomnia. In our experience, shiatsu is also relatively effective and safe for other common symptoms such as fatigue, muscular pain and body image dissatisfaction. Yet, insufficient evidence exists to delineate the best means by which shiatsu and other manual therapies could or should be integrated into routine cancer care. The purpose of the present paper is to describe what is currently known about this topic in order to support decision-making that is based on facts, rather than on myths and misconceptions. We call for more research that examines the effectiveness and safety of shiatsu and other manual therapies in the care of cancer patients.

Patients' Experiences of Cancer Diagnosis as a Result of an Emergency Presentation: A Qualitative Study.

PubMed

Black, Georgia; Sheringham, Jessica; Spencer-Hughes, Vicki; Ridge, Melanie; Lyons, Mairead; Williams, Charlotte; Fulop, Naomi; Pritchard-Jones, Kathy

2015-01-01

Cancers diagnosed following visits to emergency departments (ED) or emergency admissions (emergency presentations) are associated with poor survival and may result from preventable diagnostic delay. To improve outcomes for these patients, a better understanding is needed about how emergency presentations arise. This study sought to capture patients' experiences of this diagnostic pathway in the English NHS. Eligible patients were identified in a service evaluation of emergency presentations and invited to participate. Interviews, using an open-ended biographical structure, captured participants' experiences of healthcare services before diagnosis and were analysed thematically, informed by the Walter model of Pathways to Treatment and NICE guidance in an iterative process. Twenty-seven interviews were conducted. Three typologies were identified: A: Rapid investigation and diagnosis, and B: Repeated cycles of healthcare seeking and appraisal without resolution, with two variants where B1 appears consistent with guidance and B2 has evidence that management was not consistent with guidance. Most patients' (23/27) experiences fitted types B1 and B2. Potentially avoidable breakdowns in diagnostic pathways caused delays when patients were conflicted by escalating symptoms and a benign diagnosis given earlier by doctors. ED was sometimes used as a conduit to rapid testing by primary care clinicians, although this pathway was not always successful. This study draws on patients' experiences of their diagnosis to provide novel insights into how emergency presentations arise. Through these typologies, we show that the typical experience of patients diagnosed through an emergency presentation diverges significantly from normative pathways even when there is no evidence of serious service failures. Consultations were not a conduit to diagnosis when they inhibited patients' capacity to appraise their own symptoms appropriately and when they resulted in a reluctance to seek

Men's experiences of physical exams and cancer screening tests: a qualitative study.

PubMed

Dubé, Catherine E; Fuller, Barbara K; Rosen, Rochelle K; Fagan, Mark; O'Donnell, Joseph

2005-06-01

American men have lower overall rates of cancer screening than women. This study was designed to elicit men's health care experiences and knowledge of testicular, prostate, and colorectal cancer (CRC) screening. Fifty-three men participated in eight physician-led semistructured focus groups in Rhode Island and New Hampshire. Four groups (ages 18-35; N = 20) discussed testicular cancer screening. Four groups of older men (ages 40-79; N = 33) discussed prostate and colorectal cancer screening. Men in this study prefer physicians who establish interpersonal relationships with male patients. Lack of explanations during physical exams resulted in negative experiences. Men were eager to learn more about their health, but commonly complained that they received neither appropriate cancer screening nor sufficient explanations from their physicians. When PSA screening was offered, discussion was often inadequate. Although men expressed interest in participating in the PSA decision, sole responsibility for this complex decision was seen as undesirable. These men desired more discussion and better sources of health information during medical encounters. Clinician attention to communication, relationship building, patient education, and consideration for patient privacy and modesty are important for the care of male patients especially with sensitive exams and topics important to men's cancer screening.

Illustrations enhance older colorectal cancer patients' website satisfaction and recall of online cancer information.

PubMed

Bol, N; Smets, E M A; Eddes, E H; de Haes, J C J M; Loos, E F; van Weert, J C M

2015-03-01

This study aims to investigate the effects of illustrations in online cancer information on older cancer patients' website satisfaction (i.e. satisfaction with the attractiveness, comprehensibility and emotional support from the website) and recall of information. In an online experiment, 174 younger (<65 years) and older (≥65 years) colorectal cancer patients were randomly exposed to a webpage about transanal endoscopic microsurgery consisting of either text-only information, text with two cognitive illustrations or text with two affective illustrations. In general, adding cognitive illustrations compared with text-only information improved the satisfaction with the attractiveness of the website in both younger and older patients. For older patients in particular, cognitive illustrations facilitated recall of cancer information: whereas older patients recalled less information overall compared with younger patients (39% vs. 50%), no statistically significant differences in age on recall were observed when cognitive illustrations were added to text. Furthermore, older patients were more satisfied with the emotional support from the website than younger patients, especially when affective illustrations were present. Our results suggest that effective online cancer communication for ageing populations involves considering both cognitive and affective illustrations to enhance website satisfaction and recall of cancer information. © 2015 John Wiley & Sons Ltd.

Inpatient cancer rehabilitation: the experience of a national comprehensive cancer center.

PubMed

Shin, Ki Y; Guo, Ying; Konzen, Benedict; Fu, Jack; Yadav, Rajesh; Bruera, Eduardo

2011-05-01

Cancer rehabilitation is an important but often underutilized treatment in the comprehensive care of the cancer patient. Cancer patients have varying levels of access to rehabilitation services. Acute inpatient, inpatient consultation-based, and outpatient-based cancer rehabilitation services have been described in the literature. We will discuss acute inpatient cancer rehabilitation and some of its outcomes at the University of Texas MD Anderson Cancer Center in Houston, TX, which is the only national comprehensive cancer center to have its own acute inpatient rehabilitation unit dedicated solely to cancer patients. We retrospectively reviewed the inpatient medical records of consecutive inpatients admitted to the acute inpatient cancer rehabilitation unit from September 2008 to August 2009 for the following information: patient age, sex, primary tumor type, rehabilitation diagnoses, length of stay, discharge destination, and payer source. From September 2008 to August 2009, the physical medicine and rehabilitation service at MD Anderson Cancer Center had 1098 inpatient consultations, of which 427 patients were admitted to the inpatient rehabilitation unit with a mean length of stay of 11 days. Of the 427 patients, 73 (17%) were patients with primary neurologic-based tumor, 71 (16%) were patients with hematologic-based tumors, 48 (11%) were sarcoma patients, 35 (8%) were gastrointestinal tumor patients, 27 (6%) were head and neck tumor patients, 25 (6%) were prostate and bladder cancer patients, 24 (6%) were lung cancer patients, 22 (5%) were melanoma patients, 20 (5%) were breast cancer patients, 15 (4%) were renal cancer patients, 14 (3%) were gynecologic cancer patients, and 53 (12%) were patients with other types of cancer. Of the 427 patients admitted to acute inpatient rehabilitation at MD Anderson Cancer Center, 324 (76%) were discharged home, 72 (17%) went back to acute care service, 15 (4%) were sent to a skilled nursing facility, 9 (2%) were discharged

[Cancer Survivorship: the patient and medical care staff - how will society deal with cancer ?].

PubMed

Honda, Mayumi

2011-07-01

Instead of being preoccupied with treatment effectiveness, rates of survival, and asking how much longer will I live?, let us think in terms of how will I live my life the way I want to live it? In recent years, a new way of thinking called Cancer Survivorship has emerged in the United States, and has been drawing attention in Japan. Cancer Survivorship is a concept developed by a cancer patient support group in the United States in 1986, focusing on the experience of living with, through, and beyond cancer. Opposing society's narrow view of cancer patients as victims handed out a death sentence, Cancer Survivorship focuses on living life to the fullest from the time of cancer diagnosis until the moment of death,and works as a movement appealing to society to allow cancer survivors the right to live as they wish. This way of thinking has spread globally, and in Italy, a movement aimed at protecting cancer survivors' freedom to do paid work has unfolded. Even in Japan, with an increase in the number of cancer patients and an improved five-year survival rate, patient support groups have been emerging with the Cancer Survivorship mentality. However, Japanese society still has not given the movement sufficient recognition, and the question now is if cancer patients, even those in the terminal stage, can seize their lives and be someone who lives in the present.

In a bad place: Carers of patients with head and neck cancer experiences of travelling for cancer treatment.

PubMed

Balfe, Myles; Keohane, Kieran; O' Brien, Katie; Gooberman-Hill, Rachael; Maguire, Rebecca; Hanly, Paul; O' Sullivan, Eleanor; Sharp, Linda

2017-10-01

To explore the effect that treatment-related commuting has on carers of patients with head and neck cancer. Semi-structured interviews, thematically analysed, with 31 carers. Treatment-related commuting had a considerable impact on carers of patients with head and neck cancer, both in practical terms (economic costs, disruption) and also in psychological terms. Many carers of patients with head and neck cancer described becoming distressed by their commute. Some carers from large urban cities appeared to have hidden commuting burdens. Some carers respond to commuting stress by 'zoning out' or becoming 'like zombies'. Treatment-related travel for head and neck cancer can have significant practical and psychological impacts. Health professionals should be aware of the impacts that commuting can have on head and neck caregivers. Health services may be able to take practical steps, such as providing subsidized parking, to address head and neck carergivers' difficulties. Copyright © 2017 Elsevier Ltd. All rights reserved.

Psychosocial needs of older cancer patients: a pilot study abstract.

PubMed

Houldin, A D; Wasserbauer, N

1996-08-01

Approximately 50% of all cancers occur in persons aged 65 and over (American Cancer Society, 1994). However, the special psychological problems of these patients have been inadequately addressed (Massie & Holland, 1989). The psychosocial needs of older cancer patients were surveyed in this pilot study. Two-thirds of the older adults surveyed experienced concerns or problems. Almost 50% of the sample did not receive adequate assistance in dealing with their emotional needs and 69% did not receive sufficient spiritual support. Older cancer patients experience psychosocial distress and may benefit from professional assistance in dealing with these concerns.

Information-seeking experiences and decision-making roles of Japanese women with breast cancer.

PubMed

Nakashima, Mitsuyo; Kuroki, Syoji; Shinkoda, Harumi; Suetsugu, Yoshiko; Shimada, Kazuo; Kaku, Tsunehisa

2012-06-01

To investigate the information-seeking experiences and decision-making roles of Japanese women with breast cancer, to examine the relationship between information-seeking experiences and decision-making roles, and to explore the factors that influenced taking a more active role than the preferred role during the treatment decision-making process. In a cross-sectional study, women with breast cancer were retrospectively administered the Control Preferences Scale and the Information-Seeking Experience Scale. The Chi-Square test was used to compare differences among individual variables in decision-making roles and information-seeking experiences. Logistic regression analysis was used to explore the factors that influenced taking a more active role than the preferred role. One hundred and four patients with breast cancer participated in the investigation. Eighty-five patients (78%) perceived themselves as having knowledge of breast cancer and most patients (92%) sought information on breast cancer. The preferred roles in decision-making that they reported having before treatment were 18% active, 69% collaborative and 13% passive. The actual roles they perceived having experienced were 27% active, 43% collaborative and 30% passive. Although there was concordance of preferred and actual role for only 59% of the women, most patients reported that they were satisfied with their decision-making. Many women with breast cancer reported negative experiences with information seeking, including wanting more information (49%), expending a lot of effort to obtain the information needed (53%), not having enough time to obtain needed information (55%), frustration during the search for information (44%), concerns about the quality of the information (45%) and difficulty understanding the information received (49%). This study revealed that having a more active actual role than the initial preferred role was associated with emotional expression to the physician, having undergone

Basal Cell Carcinoma: A Patient and Physician's Experience.

PubMed

Cohen, Barbara J; Cohen, Eliahou S; Cohen, Philip R

2018-06-02

In this article, the first coauthor, a patient with a basal cell carcinoma on her upper lip, discusses her experience with Mohs micrographic surgery for the treatment of the skin cancer. The second coauthor, who is the patient's physician (a dermatologist who shares her last name but is not a relative), diagnosed her skin cancer and referred her for Mohs surgery. The third coauthor, who is the patient's son and not only a dermatologist, but also a dermatopathologist and a Mohs surgeon (and also shares her last name), summarizes the presentation and treatment of the basal cell carcinoma.

Disability in patients with head and neck cancer.

PubMed

Taylor, Joseph C; Terrell, Jeffrey E; Ronis, David L; Fowler, Karen E; Bishop, Carol; Lambert, Michael T; Myers, Larry L; Duffy, Sonia A; Bradford, Carol R; Chepeha, Douglas B; Hogikyan, Norman D; Prince, Mark E; Teknos, Theodoos N; Wolf, Gregory T

2004-06-01

Patients with head and neck cancer often experience debilitating speech, eating, and respiratory problems as well as the psychological effects of loss of function and change in body image. These patients often become unemployed as a result of their disease process, which adds financial burden to their already stressful lives. Yet the specific factors associated with unemployment have not been systematically studied. This multisite study used survey and chart data to determine the predictors of work-related disability. Of the 384 patients who were working prior to their diagnosis of head and neck cancer, 52% (n = 201) were disabled by their cancer treatment. Multivariate analysis demonstrated significant links between disability and chemotherapy (odds ratio [OR], 3.4; P <.001), neck dissection status (OR, 2.3; P =.01), pain scores (OR, 1.2; P =.01), and time since diagnosis (OR, 0.9; P =.04). More than half of the patients in this study were disabled by their head and neck cancer or treatment. Patients with head and neck cancer who have undergone chemotherapy or neck dissection or have high pain scores are at increased risk for disability from their cancer or their treatment. Efforts to prevent (if possible), better assess, and treat pain and other adverse effects of head and neck cancer treatments may also have the potential to reduce patient disability.

Exploring the experience of an enhanced recovery programme for gynaecological cancer patients: a qualitative study.

PubMed

Archer, Stephanie; Montague, Jane; Bali, Anish

2014-04-04

Perioperative enhanced recovery programmes (ERPs), identified as initiatives that improve care and save money, have been adopted by NHS Improvement and are currently being rolled out across many surgical departments within the NHS. To date, five papers have specifically explored patients' experiences of ERPs; none, however, has explored the gynaecological cancer patient experience. In total, 14 women (mean age, 66 years) participated in an audio-recorded face-to-face or telephone interview in which they discussed their experience of taking part in an ERP. The resulting data were transcribed verbatim and analysed using interpretative phenomenological analysis. Two main themes emerged from the analysis. The first, 'Taking part in the programme', highlights two important aspects of the ERP: being given an opportunity to receive information and, following this, to build knowledge about the programme. The theme also explores the challenges associated with the programme, particularly around getting mobile and complying with its demands - the women report experiencing a constant battle between intuition and instruction. The second theme, 'Home', focuses on the role home plays in motivating the patients to aim for an early discharge from hospital. Patients describe their need to return to a suitable home and the need for support from others. They also discuss the importance of the follow-up phone call. Overall, the patients in this study positively assessed the individual aspects of the ERP, in particular, information resources, the availability of the physiotherapist and the delivery of follow-up phone calls. These findings highlight the importance of developing and maintaining individual aspects of ERPs over time, to ensure their sensitivity and responsiveness to patient needs.

Breaking significant news: The experience of clinical nurse specialists in cancer and palliative care.

PubMed

Mishelmovich, Nina; Arber, Anne; Odelius, Anki

2016-04-01

The aim of the research was to explore specialist cancer and palliative care nurses experience of delivering significant news to patients with advanced cancer. A qualitative phenomenological research study was conducted to capture nurses' experiences with the aim of understanding how cancer and palliative care clinical nurse specialists work towards disclosure of advanced and terminal cancer. Data were collected through semi-structured interviews with 10 clinical nurse specialists working in one acute NHS trust. Clinical nurse specialists were recruited from the following specialities: lung cancer, breast cancer, gynaecological cancer, upper and lower gastrointestinal cancer and palliative care. Four themes emerged from the data: importance of relationships; perspective taking; ways to break significant news; feeling prepared and putting yourself forward. The findings revealed that highly experienced clinical nurse specialists (CNSs) felt confident in their skills in delivering significant news and they report using patient centred communication to build a trusting relationship so significant news was easier to share with patients. CNSs were aware of guidelines and protocols for breaking significant and bad news but reported that they used guidelines flexibly and it was their years of clinical experience that enabled them to be effective in disclosing significant news. Some areas of disclosure were found to be challenging in particular news of a terminal prognosis to patients who were of a younger age. CNSs have become more directly involved in breaking significant news to those with advanced cancer by putting themselves forward and feeling confident in their skills. Copyright © 2015 Elsevier Ltd. All rights reserved.

[Pain experiences and life satisfaction of young adult cancer patients].

PubMed

Geue, K; Schmidt, R; Sender, A; Friedrich, M

2017-02-01

After having completed medical treatment cancer patients often suffer from pain that can impair the quality of life. While young adolescents and adults (AYA) with cancer have become the focus of research during recent years, literature on the prevalence, quality and relief of pain in AYA patients is lacking. This study investigated psychosocial data on pain experienced by AYA patients (e.g. prevalence, type, distress, anxiety and need for support) and the association with the quality of life. Standardized and validated questionnaires were used for assessing pain and quality of life in AYA patients defined as the patient group between 18 and 39 years. Calculated regression models were summarized in a pathway model. Out of 117 AYA patients (66 % women) 45 (39 %) suffered from pain and of these 73 % felt impaired due to the pain, 58 (50 %) had a fear of pain and 21 (20 %) reported a need for support. The severity of pain had a negative influence on physical functioning (β = -0.335) and health-related satisfaction (β = -0.415). Regarding the quality of life, 105 patients (90 %) were overall satisfied with their life. Dissatisfaction was reported in the areas of occupation (39.34 %), ability to relax (36.31 %), physical performance (34.29 %), income (32.27 %) and partnership/sexuality (29.25 %). This study provides evidence that pain plays a relevant role for AYA patients after the end of medical treatment. A substantial proportion of AYA patients reported the need for support so that the question arises whether medical pain management is sufficient, particularly as pain was associated with impairment and strongly negatively associated with health-related satisfaction.

Posttraumatic growth and social support in Turkish patients with cancer.

PubMed

Tanriverd, Derya; Savas, Esen; Can, Ganime

2012-01-01

Posttraumatic growth (PTG) is the experience of positive change that occurs as a result of the struggle with highly challenging life crises. The need to understand PTG in relation to actual changes in an individual's life has recently been raised. Little is known about the role of social support in the experience of positive outcomes. The purpose of this study is to investigate the role of perceived social support in enhancing PTG in cancer patients. This study involved 105 cancer patients. The data were collected using a questionnaire that determined the socio-demographic features, posttraumatic growth inventory (PTGI) and perceived social support. Participants reported relatively high levels of PTG and social support. Total perceived social support, support from family, and friends were significantly positive associated with the development of PTG among cancer patients. Accordingly, the social surroundings of the patient should be informed about the importance of social support and how it helps the patient; they should be made aware of necessity of social support.

Health care professionals' perspectives of the experiences of family caregivers during in-patient cancer care.

PubMed

Ekstedt, Mirjam; Stenberg, Una; Olsson, Mariann; Ruland, Cornelia M

2014-11-01

Being a family member of a patient who is being treated in an acute care setting for cancer often involves a number of challenges. Our study describes Norwegian cancer care health professionals' perceptions of family members who served as family caregivers (FCs) and their need for support during the in-hospital cancer treatment of their ill family member. Focus group discussions were conducted with a multidisciplinary team of 24 experienced social workers, physicians, and nurses who were closely involved in the patients' in-hospital cancer treatment and care. Drawing on qualitative hermeneutic analysis, four main themes describe health professionals' perceptions of FCs during the patient's in-hospital cancer care: an asset and additional burden, infinitely strong and struggling with helplessness, being an outsider in the center of care, and being in different temporalities. We conclude that it is a challenge for health care professionals to support the family and create room for FC's needs in acute cancer care. System changes are needed in health care, so that the patient/FC dyad is viewed as a unit of care in a dual process of caregiving, which would enable FCs to be given space and inclusion in care, with their own needs simultaneously considered alongside those of the patient. © The Author(s) 2014.

Sleeping in the arms of cancer: a review of sleeping disorders among patients with cancer.

PubMed

Harris, Brande; Ross, Jeanette; Sanchez-Reilly, Sandra

2014-01-01

It is well known that cancer patients experience lack of sleep, which affects their symptoms and decrease their much needed energy, particularly while undergoing treatment. Insomnia, which is defined as a predominant complaint of dissatisfaction with sleep quantity or quality during different phases of the sleep cycle, could easily affect patients' quality of life and even cancer treatment outcomes. In this article, we review the current research on and treatments for insomnia, as well as explore cancer-related fatigue and its connections to sleep disorders.

Lived Experience among Patients Newly Diagnosed with Lung Adenocarcinoma Stage IV within One Year.

PubMed

Shih, Whei-Mei Jean; Hsu, Hsiu-Chin; Jiang, Ru-Shang; Lin, Mei-Hsiang

2015-01-01

lung cancer (LC) is the fifth of the 10 leading causes of death in the world. LC is in first place for cancer-related mortality for both males and females in Taiwan. It is one of the most difficult cancers to treat and is often diagnosed at a late stage. Patients with stage IV are often unprepared for the diagnosis. To explore lived experience among patients newly diagnosed with lung adenocarcinoma stage IV within one year. Twelve participants were recruited in this study. Content analysis of the interviews revealed four themes: (1) emotional roller coaster, (2) trying to find out causes, (3) adjusting my lifestyle, and (4) cancer fighter. This study provides new insight into the experiences of lung cancer patients y with newly diagnosed lung adenocarcinoma stage 4. These results will inform future supportive care service development and intervention research for patients with advanced stage cancer.

Attitudes toward cancer and implications for mental health outcome in African-American cancer patients.

PubMed

Zhang, Amy Y; Gary, Faye; Zhu, Hui

2015-03-01

This study examined African-American cancer patients’ attitudes toward cancer and their relationship with long-term mental health outcomes. Using mixed methods, 74 breast and prostate cancer patients including 34 depressed and 23 nondepressed African-Americans and 17 depressed Whites were interviewed. The interviews were audiotaped and transcribed. Qualitative data analysis identified themes that were coded. The codes were entered into SPSS software. Fisher’s exact test was performed to examine group differences in the identified themes. Nondepressed African-Americans more frequently reported cancer as an adaptive experience (p = 0.047) and less frequently as a struggle (p = 0.012) than the depressed African-Americans and Whites. Groups did not significantly differ in the belief that cancer has no cure (p = 0.763), but depressed African-Americans more frequently reported unwillingness to share a cancer diagnosis with family or friends than depressed Whites (p = 0.50). African-Americans’ adaptive attitudes to cancer exhibit a pragmatist approach and a worldview shaped by their lived experience. Participants’ narratives were examined to illuminate the meanings of these findings. Adaptive attitudes to cancer are associated with better long-term mental health outcomes, and conversely, unpreparedness and inability to cope are associated with a higher risk of depression among African-American cancer patients. Education about cancer and supports for treatment navigation are important measures for improving the long-term mental health of African-Americans living with cancer.

Complementary and conventional providers in cancer care: experience of communication with patients and steps to improve communication with other providers.

PubMed

Stub, Trine; Quandt, Sara A; Arcury, Thomas A; Sandberg, Joanne C; Kristoffersen, Agnete E

2017-06-08

Effective interdisciplinary communication is important to achieve better quality in health care. The aims of this study were to compare conventional and complementary providers' experience of communication about complementary therapies and conventional medicine with their cancer patients, and to investigate how they experience interdisciplinary communication and cooperation. This study analyzed data from a self-administrated questionnaire. A total of 606 different health care providers, from four counties in Norway, completed the questionnaire. The survey was developed to describe aspects of the communication pattern among oncology doctors, nurses, family physicians and complementary therapists (acupuncturists, massage therapists and reflexologists/zone-therapists). Between-group differences were analyzed using chi-square, ANOVA and Fisher's exact tests. Significance level was defined as p < 0.05 without adjustment for multiple comparisons. Conventional providers and complementary therapists had different patterns of communication with their cancer patients regarding complementary therapies. While complementary therapists advised their patients to apply both complementary and conventional modalities, medical doctors were less supportive of their patients' use of complementary therapies. Of conventional providers, nurses expressed more positive attitudes toward complementary therapies. Opportunities to improve communication between conventional and complementary providers were most strongly supported by complementary providers and nurses; medical doctors were less supportive of such attempts. A number of doctors showed lack of respect for complementary therapists, but asked for more research, guidelines for complementary modalities and training in conventional medicine for complementary therapists. For better quality of care, greater communication about complementary therapy use is needed between cancer patients and their conventional and complementary providers

Resilience Among Patients Across the Cancer Continuum: Diverse Perspectives

PubMed Central

Molina, Yamile; Yi, Jean C.; Martinez-Gutierrez, Javiera; Reding, Kerryn W.; Yi-Frazier, Joyce P.; Rosenberg, Abby R.

2014-01-01

Each phase of the cancer experience profoundly affects patients’ lives. Much of the literature has focused on negative consequences of cancer; however, the study of resilience may enable providers to promote more positive psychosocial outcomes before, during, and after the cancer experience. The current review describes the ways in which elements of resilience have been defined and studied at each phase of the cancer continuum. Extensive literature searches were conducted to find studies assessing resilience during one or more stages of the adult cancer continuum. For all phases of the cancer continuum, resilience descriptions included preexisting or baseline characteristics, such as demographics and personal attributes (e.g., optimism, social support), mechanisms of adaptation, such as coping and medical experiences (e.g., positive provider communication), as well as psychosocial outcomes, such as growth and quality of life. Promoting resilience is a critical element of patient psychosocial care. Nurses may enable resilience by recognizing and promoting certain baseline characteristics and optimizing mechanisms of adaptation. PMID:24476731

The experience of older patients with cancer in phase 1 clinical trials: a qualitative case series.

PubMed

Kvale, Elizabeth A; Woodby, Lesa; Williams, Beverly Rosa

2010-11-01

This article explores the experiences of older patients with cancer in phase 1 clinical trials. Conducting a case series of face-to-face, in-depth, open-ended interviews and using qualitative methods of analysis, we find that the psychosocial process of social comparison is relevant for understanding older adults' phase 1 clinical trial participation. Social comparison influences decisions to enroll in a phase 1 clinical trial, shapes perceptions of supportive care needs, and encourages the utilization of hope. Additional research should develop strategies for addressing supportive care needs among this patient cohort whose use of social comparison can inhibit articulation of pain, suffering, and symptom burden as well as use of informal support systems.

[Efectiveness of topical therapies in patients with breast cancer that experience radiodermatitis. A systematic review].

PubMed

Fernández-Castro, Mercedes; Martín-Gil, Belén

2015-01-01

After radiation therapy most patients experience acute skin toxicity to some degree. The purpose of this systematic review is to assess the available evidence concerning the effectivity of topical therapies on patients with breast cancer that experience radiodermatitis after radiotherapy. The review included clinical trials aimed to evaluate topical therapies for prevention or treatment of acute radiodermatitis in women with breast cancer, which were published between 2009 and 2014. The bibliographic search was carried out in the following databases: PubMed, Cinahl, Cochrane Plus, IBECS and LILACS. The studies were selected independently by peer reviewers using the Critical Appraisal Skills Programme in its Spanish version. 86 bibliographical references were identified. Twenty full-text articles of clinical trials were assessed and two were excluded because they were not completed; 12 of clinical trials evaluated topical treatment with creams and ointments, three with corticosteroid creams and other three with dressings. The effectivity of human epidermal growth factor cream, linoleic acid emulsion, topical silver sulfadiazine, corticosteroids creams and polyurethane dressings has been shown in these clinical trials. Given that radiodermatitis is a dynamic process, these topical agents were effective in different stages of skin toxicity. Some of them delayed the onset, others decreased the development and severity of acute skin toxicity degree and others improved the subjective symptoms (itching, pain, burning). Only polyurethane dressings suggest effectiveness in all stages of skin toxicity, in prevention, management of the different skin toxicity degrees and improvement of wellbeing. Copyright © 2015. Published by Elsevier España, S.L.U.

Personal stories within virtual environments: embodiments of a model for cancer patient information software.

PubMed

Greene, D D; Heeter, C

1998-01-01

Two new cancer patient information CD-ROMs extend the personal stories within virtual environments model of cancer patient information developed for Breast Cancer Lighthouse. Cancer Pain Retreat and Cancer Prevention Park: Games for Life are intended to inform and inspire users in an emotionally calming and intimately informative manner. The software offers users an experience--of visiting a virtual place and meeting and talking with patients and health care professionals.

Doctor-patient communication and cancer patients' choice of alternative therapies as supplement or alternative to conventional care.

PubMed

Salamonsen, Anita

2013-03-01

Cancer patients' use of complementary and alternative medicine (CAM) is widespread, despite the fact that clinical studies validating the efficacy of CAM remain sparse in the Nordic countries. The purpose of this study was to explore possible connections between cancer patients' communication experiences with doctors and the decision to use CAM as either supplement or alternative to conventional treatment (CT). The Regional Committee for Medical and Health Research Ethics and the Norwegian Data Inspectorate approved the study. From a group of 52 cancer patients with self-reported positive experiences from use of CAM, 13 were selected for qualitative interviews. Six used CAM as supplement, and seven as alternative to CT, periodically or permanently. Communication experiences with 46 doctors were described. The analysis revealed three connections between doctor-patient communication and patients' treatment decisions: (i) negative communication experiences because of the use of CAM; (ii) negative communication experiences resulted in the decision to use CAM, and in some cases to decline CT; and (iii) positive communication experiences led to the decision to use CAM as supplement, not alternative to CT. The patients, including the decliners of CT, wanted to discuss treatment decisions in well-functioning interpersonal processes with supportive doctors. In doctors' practices and education of doctors, a greater awareness of potential positive and negative outcomes of doctor-patient communication that concern CAM issues could be of importance. More research is needed to safeguard CAM users' treatment decisions and their relationship to conventional health care. © 2012 The Author. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

The art of age-appropriate care: reflecting on a conceptual model of the cancer experience for teenagers and young adults.

PubMed

Fern, Lorna A; Taylor, Rachel M; Whelan, Jeremy; Pearce, Susie; Grew, Tom; Brooman, Katie; Starkey, Carol; Millington, Hannah; Ashton, James; Gibson, Faith

2013-01-01

There is recognition that teenagers and young adults with cancer merit age-appropriate specialist care. However, outcomes associated with such specialist care are not defined. Patient experience and patient-reported outcomes such as quality of life are gaining importance. Nevertheless, there is a lack of theoretical basis and patient involvement in experience surveys for young people. We previously proposed a conceptual model of the lived experience of cancer. We aimed to refine this model adding to areas that were lacking or underreported. The proposed conceptual framework will inform a bespoke patient experience survey for young people. Using participatory research, 11 young people aged 13 to 25 years at diagnosis, participated in a 1-day workshop consisting of semistructured peer-to-peer interviews. Eight core themes emerged: impact of cancer diagnosis, information provision, place of care, role of health professionals, coping, peers, psychological support, and life after cancer. The conceptual framework has informed survey development for a longitudinal cohort study examining patient experience and outcomes associated with specialist cancer care. Young people must be kept at the center of interactions in recognition of their stated needs of engagement, of individually tailored information and support unproxied by parents/family. Age-appropriate information and support services that help young people deal with the impact of cancer on daily life and life after cancer must be made available. If we are to develop services that meet need, patient experience surveys must be influenced by patient involvement. Young people can be successfully involved in planning research relevant to their experience.

Treating Nicotine Dependence and Preventing Smoking Relapse in Cancer Patients

PubMed Central

Chang, Eun Hae Estelle; Braith, Andrew; Hitsman, Brian; Schnoll, Robert A.

2017-01-01

Introduction Despite the well-documented harmful effects of smoking, many cancer patients continue to smoke. Smoking cessation is critical to address in this population given the associated increase in treatment toxicity, risk of second primary tumors, decrease in treatment response and higher disease-specific and all-cause mortality with continued smoking following a cancer diagnosis. This review seeks to summarize the latest recommendations and guidelines on smoking cessation treatment for patients diagnosed with cancer, and the evidence behind those recommendations. Areas covered We reviewed the latest evidence for smoking cessation treatments for cancer patients and the clinical guidelines and recommendation available for oncologists and health care providers. The unique aspects of nicotine dependence among patients diagnosed with cancer, and key challenges and barriers that cancer survivors and health care providers experience when considering smoking cessation treatments, and available clinical resources, are also discussed. Lastly, the authors summarize future directions in the field of smoking cessation treatment for cancer patients. Expert commentary While there are areas of improvement in research of smoking cessation treatment for cancer patients, critical under-explored areas remain. Nonetheless, providers should adhere to the NCCN guidelines and offer a brief counseling intervention to motivate patients to quit smoking when appropriate resources are not available. PMID:28808692

Neuro-Oncology Branch patient experience and expertise | Center for Cancer Research

Cancer.gov

Experience and Expertise We have more than 20 years of experience working with patients and their physicians to offer a comprehensive approach to patient care. Patients travel from all over the world to be evaluated and treated by our clinical team. The Brain Tumor Clinic sees hundreds of new patients and 2,000–3,000 follow-up patients each year. 

Regaining a sense of agency and shared self-reliance: the experience of advanced disease cancer patients participating in a multidimensional exercise intervention while undergoing chemotherapy--analysis of patient diaries.

PubMed

Midtgaard, Julie; Stelter, Reinhard; Rørth, Mikael; Adamsen, Lis

2007-04-01

Evidence is emerging that exercise can reduce psychological distress in cancer patients undergoing treatment. The present study aimed to (qualitatively) explore the experiences of advanced disease cancer patients participating in a 6-week, 9-hours weekly, structured, group-based multidimensional exercise intervention while undergoing chemotherapy. Unstructured diaries from a purposive sample of three females and two males (28-52 years old) who participated in the program served as the database. Data were analyzed using a phenomenological, narrative method. The analysis yielded three themes: shifting position, self-surveillance, and negotiated strength. The intervention highlighted situations making it possible for the participants to negate psychological and physical constraints. The concept of structured exercise contains viable psychotherapeutic potentials by allowing the development of alternative bodily and mental realities complying with cancer patients' demands and abilities to regain autonomy and commitment to discover and adopt a sense of agency and shared self-reliance.

Chemotherapy-related cognitive impairment: the breast cancer experience.

PubMed

Myers, Jamie S

2012-01-01

To provide an in-depth description of the experience of chemotherapy-related cognitive impairment (CRCI) for women with breast cancer and identify related information that women would find useful prior to chemotherapy and at the onset of cognitive changes. Qualitative, descriptive design. Academic breast cancer survivorship center in Kansas City, KS. 18 breast cancer survivors within 6-12 months of having completed chemotherapy who self-reported changes in cognitive function. Data were collected with a demographic questionnaire, semistructured interviews, and a focus group. Qualitative content analysis was performed. Study themes were Life With Chemobrain, How I Changed, How I Cope, and How to Teach Me. Participants described difficulty with short-term memory, focusing, word finding, reading, and driving. Issues with fatigue, trouble sleeping, neuropathy, balance, and coordination also were of concern. Coping strategies included writing things down, depending on others, focusing on one task at a time, and giving oneself permission to make mistakes. Participants described exercise and getting enough rest to be helpful and recommended activities to stimulate the mind. Participants wanted information about the potential for CRCI prior to initiating chemotherapy and desired an individualized approach to education. Specific recommendations for education were provided. The study results provide a framework for understanding the experience of CRCI that can be used to guide development of patient and family education and generate questions for additional research. Application of the study results will enhance informed consent, validate the experience of CRCI, and contribute to patient satisfaction.

Patients’ and Family Members’ Views on Patient-Centered Communication During Cancer Care

PubMed Central

Mazor, Kathleen M.; Beard, Renee L.; Alexander, Gwen L.; Arora, Neeraj K.; Firneno, Cassandra; Gaglio, Bridget; Greene, Sarah M.; Lemay, Celeste A.; Robinson, Brandi E.; Roblin, Douglas W.; Walsh, Kathleen; Street, Richard L.; Gallagher, Thomas H.

2013-01-01

Objectives To explore patients’ and family members’ views on communication during cancer care, and to identify those aspects of clinician-patient communication which were most important to patients and family members. Methods We conducted a secondary data analysis of qualitative data from 137 patients with cancer and family members of patients with cancer. We used a modified version of the constant comparative method and coding paradigm of grounded theory. Results Patients want sensitive, caring clinicians who provide information that they need, when they need it, in a way that they can understand; who listen and respond to questions and concerns, and who attempt to understand the patient’s experience. Effective information exchange and a positive interpersonal relationship with the clinician were of fundamental importance to patients and family members. These were interrelated; for instance, failure to provide information a patient needed could damage the relationship, while excellent listening could foster the relationship. Information exchange and relationship were also integral to decision making, managing uncertainty, responding to emotions, and self-management. Clinicians who were responsive to patients’ needs beyond the immediate medical encounter were valued. Conclusions The complexity of cancer care today suggest that efforts to improve communication must be multi-level, acknowledging and addressing patient, clinician, organizational and policy barriers and facilitators. Measurement tools are needed to assess cancer patients’ and family members’ experiences with communication over the course of cancer care in order to provide meaningful, actionable feedback to those seeking to optimize their effectiveness in communicating with patients with cancer. PMID:23780672

A pattern-matched Twitter analysis of US cancer-patient sentiments.

PubMed

Crannell, W Christian; Clark, Eric; Jones, Chris; James, Ted A; Moore, Jesse

2016-12-01

Twitter has been recognized as an important source of organic sentiment and opinion. This study aimed to (1) characterize the content of tweets authored by the United States cancer patients; and (2) use patient tweets to compute the average happiness of cancer patients for each cancer diagnosis. A large sample of English tweets from March 2014 through December 2014 was obtained from Twitter. Using regular expression software pattern matching, the tweets were filtered by cancer diagnosis. For each cancer-specific tweetset, individual patients were extracted, and the content of the tweet was categorized. The patients' Twitter identification numbers were used to gather all tweets for each patient, and happiness values for patient tweets were calculated using a quantitative hedonometric analysis. The most frequently tweeted cancers were breast (n = 15,421, 11% of total cancer tweets), lung (n = 2928, 2.0%), prostate (n = 1036, 0.7%), and colorectal (n = 773, 0.5%). Patient tweets pertained to the treatment course (n = 73, 26%), diagnosis (n = 65, 23%), and then surgery and/or biopsy (n = 42, 15%). Computed happiness values for each cancer diagnosis revealed higher average happiness values for thyroid (h_avg = 6.1625), breast (h_avg = 6.1485), and lymphoma (h_avg = 6.0977) cancers and lower average happiness values for pancreatic (h_avg = 5.8766), lung (h_avg = 5.8733), and kidney (h_avg = 5.8464) cancers. The study confirms that patients are expressing themselves openly on social media about their illness and that unique cancer diagnoses are correlated with varying degrees of happiness. Twitter can be employed as a tool to identify patient needs and as a means to gauge the cancer patient experience. Copyright © 2016 Elsevier Inc. All rights reserved.

Living with cancer: a qualitative report of the experiences of leukaemia patients in Lagos, Nigeria.

PubMed

Adejoh, Samuel Ojima; Temilola, Olusegun Moses; Olayiwola, Bolutife

2013-12-01

The study examined the qualitative, cognitive and psychosocial experiences of those living with leukaemia undergoing treatment at a teaching hospital. Twenty respondents who consented to participate were purposively selected from the cancer patients with leukaemia receiving treatment in the said teaching hospital. The in-depth interview method was used to collect data. The data was analysed using manual content analysis. Data showed that patients lack basic knowledge about leukaemia and had no beliefs regarding leukaemia. Some patients believed in God and a medical breakthrough for a cure, while for some, the hope of living was not certain. The ill-health condition had brought about financial predicament to both patients and family members and has limited their productivity in terms of income-generating activities. Good interpersonal relationships and support from their care providers aided their compliance to treatment regime and provided hope for living positively with their condition. The study concludes that there is a need to educate the patients on the causes of their condition. Financial supports should be rendered to those living with leukaemia, while health care providers should be encouraged to continue to maintain good interpersonal relationships with their patients.

Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences.

PubMed

Laidsaar-Powell, Rebekah; Butow, Phyllis; Bu, Stella; Charles, Cathy; Gafni, Amiram; Fisher, Alana; Juraskova, Ilona

2016-07-01

Little is known about how family are involved in cancer treatment decision-making. This study aimed to qualitatively explore Australian oncology clinicians', patients', and family members' attitudes towards, and experiences of, family involvement in decision-making. Semi-structured interviews were conducted with 30 cancer patients, 33 family members, 10 oncology nurses and 11 oncologists. Framework analysis methods were used. Three main themes were uncovered: (i) how family are involved in the decision-making process: specific behaviours of family across 5 (extended) decision-making stages; (ii) attitudes towards family involvement in the decision-making process: balancing patient authority with the rights of the family; and (iii) factors influencing family involvement: patient, family, cultural, relationship, and decision. This study highlighted many specific behaviours of family throughout the decision-making process, the complex participant attitudes toward retaining patient authority whilst including the family, and insight into influencing factors. These findings will inform a conceptual framework describing family involvement in decision-making. Clinicians could ascertain participant preferences and remain open to the varying forms of family involvement in decision-making. Given the important role of family in the decision-making process, family inclusive consultation strategies are needed. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Understanding the role of health information in patients' experiences: secondary analysis of qualitative narrative interviews with people diagnosed with cancer in Germany.

PubMed

Blödt, Susanne; Kaiser, Maleen; Adam, Yvonne; Adami, Sandra; Schultze, Martin; Müller-Nordhorn, Jacqueline; Holmberg, Christine

2018-03-12

To analyse the role and meaning of health information in individuals' experiences with either breast, colorectal or prostate cancer in order to better understand unmet information needs of people with a cancer diagnosis. This is a secondary analysis of data from a qualitative interview study including narrative interviews and maximum variation sampling. A thematic analysis was conducted, followed by an in-depth analysis based on the principles of grounded theory. Interviewees were sought across Germany through self-help organisations, primary care clinics, rehabilitation facilities, physicians and other healthcare professionals to develop cancer modules for the website krankheitserfahrungen.de (illness experiences.de). Women with a diagnosis of breast cancer, individuals with a diagnosis of colorectal cancer and men with a diagnosis of prostate cancer. The meaning and role of information in the illness experiences were clearly associated with gaining control in a seemingly uncontrollable situation in which others -people, the disease- take over. Four categories characterise the ways in which information helped interviewees to regain a sense of control following a diagnosis of cancer: 'becoming confident in one's treatment decision', 'taking responsibility for one's situation', 'understanding the consequences of the disease and treatment for one's life', and 'dealing with fear'. There was, however, always a fine line between information seeking and becoming overwhelmed by information. Information needs to be understood as a management tool for handling the disease and its (potential) consequences. Patients' unmet needs for information might not be easily solved by a simple increase in the amount of information because emotional support and respect for patient autonomy might also play a role. The evaluation of one's own information behaviour and the information received is closely linked to how the illness unfolds. This makes it challenging to document unmet

CAREGIVERS’ DIFFERING NEEDS ACROSS KEY EXPERIENCES OF THE ADVANCED CANCER DISEASE TRAJECTORY

PubMed Central

Bernard-DuBenske, Lori L.; Wen, Kuang-Yi; Gustafson, David H.; Guarnaccia, Charles A.; Cleary, James F.; Dinauer, Susan K.; McTavish, Fiona M.

2013-01-01

Familial caregivers are providing increasing amounts of care to advanced cancer patients. Increased understanding of caregivers’ needs is vital in providing necessary support to lessen caregiver burden and morbidity. Current literature has identified caregiver and patient needs at broad stages of the cancer trajectory; however, such broad stages may be too general to inform a practice of targeting specific interventions when they have the greatest utility. This study examines a variety of particular needs across a number of more discrete illness-related transition experiences specifically in the advanced cancer disease trajectory. One hundred fifty-nine female informal caregivers of people with advanced cancer completed a needs assessment survey. Analyses of these cross-sectional retrospective-report data reveal that cancer caregiver needs vary across specific key experiences occurring within the broader stages of illness identified by current literature. Furthermore, caregivers have unique needs during bereavement. While the sample characteristics are demographically limited, this study provides preliminary evidence that the broad stages are not specific enough increments for effectively examining caregiver needs, and supports the need for more precise distribution of cancer-related information at more discrete times in the illness course. PMID:18662420

Psychometric Characteristics of a Patient Reported Outcome Measure on Ego-Integrity and Despair among Cancer Patients

PubMed Central

Kleijn, Gitta; Post, Lenneke; Witte, Birgit I.; Bohlmeijer, Ernst T.; Westerhof, Gerben J.; Cuijpers, Pim; Verdonck-de Leeuw, Irma M.

2016-01-01

Purpose To evaluate psychometric characteristics of a questionnaire (the Northwestern Ego-integrity Scale (NEIS)) on ego-integrity (the experience of wholeness and meaning in life, even in spite of negative experiences) and despair (the experience of regret about the life one has led, and feelings of sadness, failure and hopelessness) among cancer patients. Methods Cancer patients (n = 164) completed patient reported outcome measures on ego-integrity and despair (NEIS), psychological distress, anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), and quality of life (EORTC QLQ-C30 (cancer survivors, n = 57) or EORTC QLQ-C15-PAL (advanced cancer patients, n = 107)). Confirmatory Factor Analysis was used to assess construct validity. Cronbach’s alpha was used to assess internal consistency. Convergent validity was tested based on a priori defined hypotheses: a higher level of ego-integrity was expected to be related to a higher level of quality of life, and lower levels of distress, depression and anxiety; a higher level of despair was expected to be related to a lower level of quality of life, and higher levels of distress, depression and anxiety. Results The majority of all items (94.5%) of the NEIS were completed by patients and single item missing rate was below 2%. The two subscales, labeled as Ego-integrity (5 items) and Despair (4 items) had acceptable internal consistency (Cronbach’s alpha .72 and .61, respectively). The Ego-integrity subscale was not significantly associated with quality of life, distress, anxiety, or depression. The Despair subscale correlated significantly (p <.001) with quality of life (r = -.29), distress (r = .44), anxiety (r = .47) and depression (r = .32). Conclusion The NEIS has good psychometric characteristics to assess ego-integrity and despair among cancer patients. PMID:27195750

Do Differential Response Rates to Patient Surveys Between Organizations Lead to Unfair Performance Comparisons?: Evidence From the English Cancer Patient Experience Survey.

PubMed

Saunders, Catherine L; Elliott, Marc N; Lyratzopoulos, Georgios; Abel, Gary A

2016-01-01

Patient surveys typically have variable response rates between organizations, leading to concerns that such differences may affect the validity of performance comparisons. To explore the size and likely sources of associations between hospital-level survey response rates and patient experience. Cross-sectional mail survey including 60 patient experience items sent to 101,771 cancer survivors recently treated by 158 English NHS hospitals. Age, sex, race/ethnicity, socioeconomic status, clinical diagnosis, hospital type, and region were available for respondents and nonrespondents. The overall response rate was 67% (range, 39% to 77% between hospitals). Hospitals with higher response rates had higher scores for all items (Spearman correlation range, 0.03-0.44), particularly questions regarding hospital-level administrative processes, for example, procedure cancellations or medical note availability.From multivariable analysis, associations between individual patient experience and hospital-level response rates were statistically significant (P<0.05) for 53/59 analyzed questions, decreasing to 37/59 after adjusting for case-mix, and 25/59 after further adjusting for hospital-level characteristics.Predicting responses of nonrespondents, and re-estimating hypothetical hospital scores assuming a 100% response rate, we found that currently low performing hospitals would have attained even lower scores. Overall nationwide attainment would have decreased slightly to that currently observed. Higher response rate hospitals have more positive experience scores, and this is only partly explained by patient case-mix. High response rates may be a marker of efficient hospital administration, and higher quality that should not, therefore, be adjusted away in public reporting. Although nonresponse may result in slightly overestimating overall national levels of performance, it does not appear to meaningfully bias comparisons of case-mix-adjusted hospital results.

What Do Patients Prefer? Understanding Patient Perspectives on Receiving a New Breast Cancer Diagnosis.

PubMed

Attai, Deanna J; Hampton, Regina; Staley, Alicia C; Borgert, Andrew; Landercasper, Jeffrey

2016-10-01

There is variability in physician practice regarding delivery method and timeliness of test results to cancer patients. Our aim was to survey patients to determine if there was a difference between actual and preferred care for disclosure of test results. A de-identified survey was distributed to online cancer support groups to query patients about their experience regarding communication of cancer testing and timeliness. Analyses of the differences between actual and preferred communication and wait times were performed. Overall, 1000 patients completed the survey. The analysis herein was restricted to 784 breast cancer survivors. Survey responders were predominately White (non-Hispanic; 89 %), college educated (78 %), and media 'savvy' (online medical media usage; 97 %). Differences between actual and preferred care were identified for the domains of mode of communication and wait times for initial breast cancer diagnostic biopsies and other tests. A total of 309 (39 %) of 784 patients received face-to-face communication for a new cancer diagnosis, with 394 (50 %) patients preferring this option (p < 0.0001). In addition, 315 (40 %) of 784 patients received their cancer biopsy result within 2 days, with 646 (82 %) patients preferring this option (p < 0.0001). Differences were also identified between actual and preferred care for multiple other test types. Actual care for timeliness and modes of communication did not reflect patient-desired care. National and local initiatives to improve performance are needed. As a first step, we recommend that each patient be queried about their preference for mode of communication and timeliness, and efforts made to comply.

Spiritual Values and Death Anxiety: Implications for Counseling With Terminal Cancer Patients.

ERIC Educational Resources Information Center

Gibbs, Harriett Weidman; Achterberg-Lawlis, Jeanne

1978-01-01

Results indicate cancer patients depend strongly on perceived strength of religious beliefs and values in coping with imminent death. Low fear of death was associated with previous experience with a dying person. Death anxiety scale score for cancer patients was significantly lower than for other populations. (Author/BEF)

Clinical characteristics of bladder cancer in patients with spinal cord injury: the experience from a single centre.

PubMed

Böthig, Ralf; Kurze, Ines; Fiebag, Kai; Kaufmann, Albert; Schöps, Wolfgang; Kadhum, Thura; Zellner, Michael; Golka, Klaus

2017-06-01

Life expectancy for people with spinal cord injury has shown a marked increase due to modern advances in treatment methods and in neuro-urology. However, since life expectancy of people with paralysis increases, the risk of developing of urinary bladder cancer is gaining importance. Single-centre retrospective evaluation of patient data with spinal cord injuries and proven urinary bladder cancer and summary of the literature. Between 1998 and 2014, 24 (3 female, 21 male) out of a total of 6599 patients with spinal cord injury were diagnosed with bladder cancer. The average age at bladder cancer diagnosis was 57.67 years, which is well below the average for bladder cancer cases in the general population (male: 73, female: 77). All but one patient had a latency period between the onset of the spinal paralysis and tumour diagnosis of more than 10 years. The median latency was 29.83 years. The median survival for these patients was 11.5 months. Of the 24 patients, 19 (79%) had muscle invasive bladder cancer at ≥T2 at the time of diagnosis. The type of neurogenic bladder (neurogenic detrusor overactivity or acontractility) and the form of bladder drainage do not appear to influence the risk. Long-term indwelling catheter drainage played only a minor role in the investigated patients. The significantly younger age at onset and the frequency of invasive tumours at diagnosis indicate that spinal cord injury influences bladder cancer risk and prognosis as well. Early detection of bladder cancer in patients with spinal cord injury remains a challenge.

The relationship between praying and life expectancy in cancerous patients.

PubMed

Hekmati Pour, N; Hojjati, H

2015-01-01

Introduction. Knowing that someone was entangled with cancer is a surprising experience for that person. Being aware of having cancer not only makes the person loose his hopes and ambitions, but also influences his body and mental. Meanwhile, religion can play the proper role of complementary treatment, increasing life expectancy in these patients. Objective. The study was conducted with the aim of determining the relationship between praying and life expectancy in cancerous patients. Method. This descriptive correlation study was performed on 96 malignant patients who were under chemotherapy in Golestan province in 1392. Paloma and Pendleton's Measure of Prayer Type questionnaires and Schneider questionnaire of life expectancy were used to collect this information. Analyses were performed by using SPSS 21.0. Data were analyzed by using the linear regression and the analytical significance was set at p < 0.05. Findings. The linear regression showed a significant relationship between life expectancy and praying (CI95:0.01-0.13), OR = 0.07, Beta = -0.24 P < 0.02) and in the light of previous experience it showed a significant relationship between praying and life expectancy. Conclusion. According to the obtained result of this study, cancerous patients can overcome their illness through praying, and they can also triumph cancer through self-confidence and control it, by getting more knowledge of their disease and become more hopeful about their future.

The Lived Experience of Iranian Women Confronting Breast Cancer Diagnosis.

PubMed

Mehrabi, Esmat; Hajian, Sepideh; Simbar, Masoomeh; Hoshyari, Mohammad; Zayeri, Farid

2016-03-01

The populations who survive from breast cancer are growing; nevertheless, they mostly encounter with many cancer related problems in their life, especially after early diagnosis and have to deal with these problems. Except for the disease entity, several socio-cultural factors may affect confronting this challenge among patients and the way they deal with. Present study was carried out to prepare clear understanding of Iranian women's lived experiences confronting breast cancer diagnosis and coping ways they applied to deal with it. This study was carried out by using qualitative phenomenological design. Data gathering was done through purposive sampling using semi-structured, in-depth interviews with 18 women who survived from breast cancer. The transcribed interviews were analyzed using Van Manen's thematic analysis approach. Two main themes were emerged from the interviews including "emotional turbulence" and "threat control". The first, comprised three sub themes including uncertainty, perceived worries, and living with fears. The second included risk control, recurrence control, immediate seeking help, seeking support and resource to spirituality. Emotional response was the immediate reflection to cancer diagnosis. However, during post-treatment period a variety of emotions were not uncommon findings, patients' perceptions have been changing along the time and problem-focused coping strategies have replaced. Although women may experience a degree of improvement and adjustment with illness, the emotional problems are not necessarily resolved, they may continue and gradually engender positive outcomes.

Cardiorespiratory fitness and muscle strength in pancreatic cancer patients.

PubMed

Clauss, Dorothea; Tjaden, Christine; Hackert, Thilo; Schneider, Lutz; Ulrich, Cornelia M; Wiskemann, Joachim; Steindorf, Karen

2017-09-01

Cancer patients frequently experience reduced physical fitness due to the disease itself as well as treatment-related side effects. However, studies on physical fitness in pancreatic cancer patients are missing. Therefore, we assessed cardiorespiratory fitness and muscle strength of pancreatic cancer patients. We included 65 pancreatic cancer patients, mostly after surgical resection. Cardiorespiratory fitness was assessed using cardiopulmonary exercise testing (CPET) and 6-min walk test (6MWT). Hand-held dynamometry was used to evaluate isometric muscle strength. Physical fitness values were compared to reference values of a healthy population. Associations between sociodemographic and clinical variables with patients' physical fitness were analyzed using multiple regression models. Cardiorespiratory fitness (VO 2 peak, 20.5 ± 6.9 ml/min/kg) was significantly lower (-24%) compared to healthy reference values. In the 6MWT pancreatic cancer patients nearly reached predicted values (555 vs. 562 m). Maximal voluntary isometric contraction (MVIC) of the upper (-4.3%) and lower extremities (-13.8%) were significantly lower compared to reference values. Overall differences were larger in men than those in women. Participating in regular exercise in the year before diagnosis was associated with greater VO 2 peak (p < .05) and MVIC of the knee extensors (p < .05). Pancreatic cancer patients had significantly impaired physical fitness with regard to both cardiorespiratory function and isometric muscle strength, already in the early treatment phase (median 95 days after surgical resection). Our findings underline the need to investigate exercise training in pancreatic cancer patients to counteract the loss of physical fitness.

Developing a Comprehensive Cardio-Oncology Program at a Cancer Institute: The Moffitt Cancer Center Experience

PubMed Central

Fradley, Michael G.; Brown, Allen C.; Shields, Bernadette; Viganego, Federico; Damrongwatanasuk, Rongras; Patel, Aarti A.; Hartlage, Gregory; Roper, Natalee; Jaunese, Julie; Roy, Larry; Ismail-Khan, Roohi

2017-01-01

Cardio-oncology is a multidisciplinary field focusing on the management and prevention of cardiovascular complications in cancer patients and survivors. While the initial focus of this specialty was on heart failure associated with anthracycline use, novel anticancer agents are increasingly utilized and are associated with many other cardiotoxicities including hypertension, arrhythmias and vascular disease. Since its inception, the field has developed at a rapid pace with the establishment of programs at many major academic institutions and community practices. Given the complexities of this patient population, it is important for providers to possess knowledge of not only cardiovascular disease but also cancer subtypes and their specific therapeutics. Developing a cardio-oncology program at a stand-alone cancer center can present unique opportunities and challenges when compared to those affiliated with other institutions including resource allocation, cardiovascular testing availability and provider education. In this review, we present our experiences establishing the cardio-oncology program at Moffitt Cancer Center and provide guidance to those individuals interested in developing a program at a similar independent cancer institution. PMID:28781723

Spatial analyses identify the geographic source of patients at a National Cancer Institute Comprehensive Cancer Center.

PubMed

Su, Shu-Chih; Kanarek, Norma; Fox, Michael G; Guseynova, Alla; Crow, Shirley; Piantadosi, Steven

2010-02-01

We examined the geographic distribution of patients to better understand the service area of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, a designated National Cancer Institute (NCI) comprehensive cancer center located in an urban center. Like most NCI cancer centers, the Sidney Kimmel Comprehensive Cancer Center serves a population beyond city limits. Urban cancer centers are expected to serve their immediate neighborhoods and to address disparities in access to specialty care. Our purpose was to learn the extent and nature of the cancer center service area. Statistical clustering of patient residence in the continental United States was assessed for all patients and by gender, cancer site, and race using SaTScan. Primary clusters detected for all cases and demographically and tumor-defined subpopulations were centered at Baltimore City and consisted of adjacent counties in Delaware, Pennsylvania, Virginia, West Virginia, New Jersey and New York, and the District of Columbia. Primary clusters varied in size by race, gender, and cancer site. Spatial analysis can provide insights into the populations served by urban cancer centers, assess centers' performance relative to their communities, and aid in developing a cancer center business plan that recognizes strengths, regional utility, and referral patterns. Today, 62 NCI cancer centers serve a quarter of the U.S. population in their immediate communities. From the Baltimore experience, we might project that the population served by these centers is actually more extensive and varies by patient characteristics, cancer site, and probably cancer center services offered.

Financial Toxicity (Financial Distress) and Cancer Treatment (PDQ®)—Patient Version

Cancer.gov

Financial Toxicity and Cancer Treatment discusses the increased financial burdens and pressures that cancer patients and survivors often experience. Learn more about financial toxicity, risk factors, and ways to reduce financial distress in this expert-reviewed summary.

Culturally Competent Care for Sexual and Gender Minority Patients at National Cancer Institute-Designated Comprehensive Cancer Centers

PubMed Central

Wheldon, Christopher W.; Schabath, Matthew B.; Hudson, Janella; Bowman Curci, Meghan; Kanetsky, Peter A.; Vadaparampil, Susan T.; Simmons, Vani N.; Sanchez, Julian A.; Sutton, Steven K.

2018-01-01

Abstract Purpose: This study sought to identify the policies and guidelines regarding culturally competent care of sexual and gender minority (SGM) cancer patients and survivors at National Cancer Institute (NCI)-Designated Comprehensive Cancer Centers. Methods: This study used an in-depth interview qualitative approach. Semistructured interviews were conducted via telephone with representatives from 21 of the 45 NCI-Designated Comprehensive Cancer Centers in 2015. Verbatim transcripts were created from the audiotapes for content analysis. Results: Two main themes were identified as follows: (1) patient-focused experiences and support and (2) organization-focused development activities. Most of the cancer centers in this study had an advisory committee to assist with SGM policies and guidelines. Despite the existence of these committees, the majority of centers did not have explicit policies, guidelines, or routine practices addressing the following issues: the collection and integration of sexual orientation and gender identity information in the medical record, gender-neutral language on patient forms, patient educational materials with SGM-specific health concerns, SGM-specific support for cancer survivors, or required SGM-specific cultural competency trainings for medical and nonmedical staff. Conclusion: In general, the cancer centers in this study lacked institutional policies, guidelines, and practices focused on patient-centered cancer care for SGM populations. Coordinated efforts are needed to systemically improve patient-centered cancer care for these populations. PMID:29641317

Transition from patient to survivor in African American breast cancer survivors.

PubMed

Mollica, Michelle; Nemeth, Lynne

2015-01-01

Breast cancer is the most common cancer among African American (AA) women, with a survival rate of 79%, lower than for other ethnic and racial groups in the United States. Minorities experience disparities in timeliness of care, delivery of culturally sensitive care, and outcomes. Transition from active treatment to survivorship presents an opportunity for exploration. This qualitative, grounded theory study examined the experiences and coping of AA women as they transition from being a breast cancer patient to being a breast cancer survivor. This study included 15 community-based AA women aged 35 to 75 years in Charleston, South Carolina, and Buffalo, New York, who had completed treatment for primary breast cancer between 6 and 18 months prior. A semistructured interview explored experiences as they finished treatment, support from family, role of spirituality, physical and emotional concerns, needs of the survivor, as well as suggestions for possible interventions for other survivors. Two investigators reviewed transcripts and coding to confirm and refine the findings. Four main themes were identified: perseverance through struggles supported by reliance on faith, persistent physical issues, anticipatory guidance needed after treatment, and emotional needs as important as physical. The transition from cancer patient to survivor is a pervasive time filled with stress, loss of safety net, and significant coping measures. Participants expressed the need to have support from another AA breast cancer survivor as they complete treatment. Nurses and providers can assess and address stressors in transition. Nurses should design patient-centered interventions using peers as direct support to promote effective coping strategies.

Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives.

PubMed

Mosher, Catherine E; Adams, Rebecca N; Helft, Paul R; O'Neil, Bert H; Shahda, Safi; Rattray, Nicholas A; Champion, Victoria L

2016-05-01

Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient's illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers' key challenges in coping with their family member's advanced colorectal cancer from the perspective of patients and caregivers. Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis. In nearly all cases, patient and caregiver reports of the caregiver's key challenge were discrepant. Across patient and caregiver reports, caregivers' key challenges included processing emotions surrounding the patient's initial diagnosis or recurrence and addressing the patient's practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient's potential functional decline and prognosis and observing the patient suffer from various physical symptoms. Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers' challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.

Patient Perceptions of Illness Identity in Cancer Clinical Trial Decision-Making.

PubMed

Palmer-Wackerly, Angela L; Dailey, Phokeng M; Krok-Schoen, Jessica L; Rhodes, Nancy D; Krieger, Janice L

2018-08-01

When patients are diagnosed with cancer, they begin to negotiate their illness identity in relation to their past and future selves, their relationships, and their group memberships. Thus, how patients view their cancer in relation to their other identities may affect how and why they make particular decisions about treatment options. Using the Communication Theory of Identity (CTI), the current study explores: (1) how and why illness identity is framed across identity layers in relation to one particular cancer treatment: participation in a cancer clinical trial (CT); and (2) how and why patients experience identity conflicts while making their treatment decisions. Semi-structured, in-depth interviews were analyzed for 46 cancer patients who were offered a CT. Results of a grounded theory analysis indicated that patients expressed separate identity frames (e.g., personal, relational, and communal), aligned identity frames (e.g., personal and communal), and identity conflicts (e.g., personal-personal). This study theoretically shows how and why patient illness identity relates to cancer treatment decision-making as well as how and why patients relate (and conflict) with the cancer communal identity frame. Practical implications include how healthcare providers and family members can support patient decision-making through awareness of and accommodating to identity shifts.

Adolescents’ Experiences When Living With a Parent With Cancer: A Qualitative Study

PubMed Central

Azarbarzin, Mehrdad; Malekian, Azadeh; Taleghani, Fariba

2016-01-01

Background: Cancer affects not only the patient but also their entire family, especially adolescents. Adolescents whose parents are ill may manifest their distress through changes in school performance, physical complaints of pain and discomfort, as well as changes in social and interpersonal relations. There has been very little research about the effects of cancer on adolescents in Iran. Objectives: The purpose of this qualitative study was to explore the Iranian adolescents’ experiences when living with a parent with cancer. Patients and Methods: In this research, the descriptive-explorative approach was used. There were a total of 27 participants. Purposeful sampling was used and data collection methods were semi-structured deep interviews. Constant comparative analysis was used to study the data. Results: The findings of this study showed that the main experiences of these adolescents were categorized into seven themes: 1- psychological problems of adolescents; 2- supportive-educative needs; 3- cancer as a two edged sword in family relationships; 4- stages of confrontation with the parent’s cancer; 5- effect of cancer on social dimensions; 6- affective and helpful supportive agents; 7- Need of support for education under special conditions. Conclusions: This research showed that Iranian adolescents had the same experiences as other adolescents in other countries in many aspects yet in some issues, such as religious strategy, they had strong religious beliefs that would help them cope with their parents’ cancer. Also it was shown that we must plan a program in which education and support should be provided to enable adolescents to cope with this detrimental situation with minimal disruption. PMID:26889396

Lung cancer in younger patients.

PubMed

Abbasowa, Leda; Madsen, Poul Henning

2016-07-01

Lung cancer remains a leading cause of cancer-related death. The incidence increases with age and the occurrence in young patients is relatively low. The clinicopathological features of lung cancer in younger patients have not been fully explored previously. To assess the age differences in the clinical characteristics of lung cancer, we conducted a retrospective analysis comparing young patients ≤ 65 years of age with an elderly group > 65 years of age. Among 1,232 patients evaluated due to suspicion of lung cancer in our fast-track setting from January-December 2013, 312 newly diagnosed lung cancer patients were included. Patients ≤ 65 years had a significantly higher representation of females (p = 0.0021), more frequent familial cancer aggregation (p = 0.028) and a lower incidence of squamous cell carcinoma (p = 0.0133). When excluding pure carcinoid tumours, a significantly higher proportion of the younger patients presented with advanced stage disease (p = 0.0392). Combined modality therapy was more common in younger patients (p = 0.0009), while chemotherapy appeared less prevalent among the elderly (p = 0.0015). Lung cancer in younger patients comprises a distinct clinicopathological entity with more frequent advanced stage disease and a significantly greater proportion with a family history of cancer. Implementing genetic background assessments and considering lung cancer as a possible diagnosis in younger, symptomatic patients, is of paramount importance. none. The study was approved by the -Danish Data Protection Agency.

Preparing breast cancer patients for survivorship (PREP) - a pilot study of a patient-centred supportive group visit intervention.

PubMed

Thompson, Joanne; Coleman, Rob; Colwell, Brigitte; Freeman, Jenny; Greenfield, Diana; Holmes, Karen; Mathers, Nigel; Reed, Malcolm

2014-02-01

The process of breast cancer follow-up has psychosocial benefits for patients, notably reassurance, although attending hospital appointments can increase anxiety. Discharge from hospital follow-up can also invoke anxiety as many patients seek reassurance from continued specialist follow-up. Inevitably, due to increased survival and associated resource issues, opportunities for follow-up and support will be reduced. We delivered and evaluated an intervention which supported the transition from cancer patient to cancer survivor, for breast cancer patients being discharged to primary care. We delivered and evaluated a pilot of a patient-centred group intervention 'Preparing Patients for Discharge', aimed at reducing distress. Between January and September 2008, 172 participants were recruited and 74 (43%) expressed an interest in participating in the intervention; 32 of 74 took part, and participated in its evaluation using a semi-structured evaluation questionnaire, standardized measures [Hospital Anxiety and Depression Scale (HADS) and Clinical Outcomes for Routine Evaluation (CORE)] and independent qualitative interviews. The qualitative analysis of questionnaire data indicated key factors were 1) shared experience, 2) support and reassurance, and 3) positive views about cancer and being discharged. The interview data revealed that the intervention enabled participants to: share experiences, focus on emotional needs, and have open discussions about recurrence, while increasing confidence in being discharged and using alternative support services. However, no significant differences were found in pre-post-interventions scores of HADS and CORE. Providing a structured group intervention approach for breast cancer patients offers an early opportunity to support cancer survivors and facilitate and encourage self-management. Copyright © 2013 Elsevier Ltd. All rights reserved.

Intraperitoneal chemotherapy for advanced ovarian and peritoneal cancers in patients following interval debulking surgery or primary cytoreductive surgery: Tom Baker Cancer Centre experience from 2006 to 2009.

PubMed

Nelson, Gregory; Lucero, Carlos Aspe; Chu, Pamela; Nation, Jill; Ghatage, Prafull

2010-03-01

To describe our experience with cisplatin- and paclitaxel-based IP chemotherapy in patients treated initially with either neoadjuvant chemotherapy and interval debulking surgery (IDS) or primary cytoreductive surgery (PCRS). We performed a retrospective review of the records of 67 patients (38 IDS, 29 PCRS) enrolled in the intraperitoneal (IP) chemotherapy program at the Tom Baker Cancer Centre between 2006 and 2009. Information pertaining to patient demographics, IP chemotherapy toxicity, and catheter complications was extracted, and the median time to recurrence was calculated. Most patients in the study were aged 50 to 70 years and had a diagnosis of stage III serous ovarian cancer. Overall, 295/393 IP cycles (75%) were successfully administered. The proportion of patients completing six cycles of chemotherapy in the IDS and PCRS groups was 53% and 59%, respectively. Frequent (> 25%) Grade 1 to 2 chemotherapy toxicities included fatigue, peripheral neuropathy, and nausea. Catheter complications were observed in 34% of patients (23/67). The recurrence rates for patients completing four or more cycles of IP chemotherapy in the IDS and PCRS groups were 58% and 35%, respectively, with the median time to recurrence approximately one year. Although IP chemotherapy is well tolerated in both IDS and PCRS patients, the median time to recurrence is shorter than expected.

The Cancer Family Caregiving Experience: An Updated and Expanded Conceptual Model

PubMed Central

Fletcher, Barbara Swore; Miaskowski, Christine; Given, Barbara; Schumacher, Karen

2011-01-01

Objective The decade from 2000–2010 was an era of tremendous growth in family caregiving research specific to the cancer population. This research has implications for how cancer family caregiving is conceptualized, yet the most recent comprehensive model of cancer family caregiving was published ten years ago. Our objective was to develop an updated and expanded comprehensive model of the cancer family caregiving experience, derived from concepts and variables used in research during past ten years. Methods A conceptual model was developed based on cancer family caregiving research published from 2000–2010. Results Our updated and expanded model has three main elements: 1) the stress process, 2) contextual factors, and 3) the cancer trajectory. Emerging ways of conceptualizing the relationships between and within model elements are addressed, as well as an emerging focus on caregiver-patient dyads as the unit of analysis. Conclusions Cancer family caregiving research has grown dramatically since 2000 resulting in a greatly expanded conceptual landscape. This updated and expanded model of the cancer family caregiving experience synthesizes the conceptual implications of an international body of work and demonstrates tremendous progress in how cancer family caregiving research is conceptualized. PMID:22000812

Framing of outcome and probability of recurrence: breast cancer patients' choice of adjuvant chemotherapy (ACT) in hypothetical patient scenarios.

PubMed

Zimmermann, C; Baldo, C; Molino, A

2000-03-01

To examine the effects of framing of outcome and probabilities of cancer occurrence on the treatment preference which breast cancer patients indicate for hypothetical patient scenarios. A modified version of the Decision Board Instrument (Levine et al. 1992) was administered to 35 breast cancer patients with past ACT experience. Patients expressed their choice regarding ACT for six scenarios which were characterized by either negative or positive framing of outcome and by one of the three levels of probability of recurrence (high, medium, low). The framing had no influence on ACT choices over all three probability levels. The majority chose ACT for high and medium risk and one third switched from ACT to No ACT in the low-risk condition. This switch was statistically significant. Hypothetical treatment decisions against ACT occur only when the probability of recurrence is low and the benefit of ACT is small. This finding for patients with past experience of ACT is similar to those reported for other oncological patient groups still in treatment.

Students meeting with caregivers of cancer patient: results of an experience-based learning project.

PubMed

Atasoy, Beste M; Sarikaya, Ozlem; Kuscu, M Kemal; Yondem, Merve; Buyukkara, Elif; Eken, E Gokcen; Kahyaoglu, Figen

2012-12-01

The communication between medical students and cancer caregivers, and the problems they have experienced as well as the outcomes for their professional development before starting clinical practice was assessed in the context of a student research project. Data were collected by questionnaires or by 20 to 40-min long interviews with cancer caregivers. Their communications with physicians, hearing the bad news, and health service satisfaction were questioned. Therefore, the caregivers trusted the professional approach of their physician. However, they expected more empathic communication in the process of diagnosis and therapy. Development of empathy and trust-based communication between patients and physicians and enhancement of the quality of devoted time to cancer patients and caregivers may have an effect on the course of disease. Interviewer students mentioned that they developed communication skills about difficult clinical tasks and in delivering bad news face to face to cancer caregivers before starting their clinical education.

Colorectal cancer in patients with type 2 diabetes mellitus: a single-center experience.

PubMed

Sinagra, E; Guarnotta, V; Raimondo, D; Mocciaro, F; Dolcimascolo, S; Rizzolo, C A; Puccia, F; Maltese, N; Citarrella, R; Messina, M; Spada, M; Tomasello, G; Cappello, F; Leone, A; Rossi, F; Di Mitri, R; Morreale, G C; Marasà, S; Midiri, M; Midiri, F; Sinagra, D

2017-01-01

Type 2 diabetes mellitus (T2DM) is associated with an increased risk of colorectal cancer (CRC). The aim of the study is to evaluate the prevalence of CRC in a cohort of Caucasian patients with T2DM and the association with other variables previously known to be related with increased risk of CRC. We retrospectively evaluated the data of 741 consecutive Caucasian patients with T2DM who underwent colonoscopic screening in our tertiary referral center. A control cohort of 333 patients with thyroid disease was selected to evaluate the difference in the incidence of CRC. At a median follow-up of 132.5 months (range 33.3-175.7), 67 cases of cancer (prevalence 9%) occurred; among these, 14 cases of CRC were reported (prevalence 1.88%) among the diabetic patients, while only two case (one of these was a CRC) (overall prevalence 0.006%, prevalence of CRC 0.003%) occurred in the control group; the difference between the prevalence of CRC was statistically significant (chi-square 4.21, p=0.04). The median duration of T2DM to CRC diagnosis was 168 months (range 12-768). At the univariate analysis, older age (p=0.001, r 0.138) and diabetes duration (p=0.001, r 0.138) were related to higher risk of cancer, while metformin seems to be protective towards cancer (p=0.07, r -0.098). In the subset of patients with CRC, the age (RR = 2.25; 95% CI: 0.30 - 17.31; p less than 0.001), the diabetes duration (RR = 1.93; 95% CI: 0.25 – 14.77; p = 0.001) and the sulphonylureas treatment (RR = 2.33; 95% CI: 0.78 – 7.38; p = 0.007) were independently correlated with CRC. In our study, the prevalence of CRC in the cohort of patients with T2DM was higher compared to that from the National Tumor Register in 2010 (0.5%). Furthermore, we could speculate that sulphonylureas may play a role in CRC carcinogenesis impairing the physiological insulin secretion.

Experience of Southern Chinese: new challenges in treating young female breast cancer patients at child-bearing age--a call for multi-disciplinary collaboration.

PubMed

Kwong, Ava; Chu, Annie Tsz-Wai

2012-01-01

Compared with western populations, Southern Chinese, especially those residing in Hong Kong, are experiencing increasing breast cancer incidence and also a younger onset of breast cancer. Combating this problem and treating young women with breast cancer poses specific challenges and complicated considerations. With reference to the postponement in the age of marriage and reproduction in modern societies, the issue of fertility after breast cancer, especially for high-risk young patients, is one significant quality of life concern that cannot be underestimated as a secondary medical topic. While the issue has its significance and is confronting front-line breast cancer care teams of different disciplines, related research is mostly on Caucasians. In cultures where the traditional expectation on women for child-bearing is still prominent, young breast cancer patients may endure significant distress over fertility options after breast cancer. There is a lack of related data on Asian breast cancer survivors at child-bearing age, which calls for a pressing need to encourage qualitative groundwork, case reports, and cohort experiences in hope for providing insight and arouse research interest. In order to provide a long-term comprehensive multidisciplinary management service with encouragement to encompass prospects for a positive future among young breast cancer survivors, relevant disciplines need to collaborate and work efficaciously together both on clinical and research aspects of cancer-related fertility issues.

Identifying patterns of adaptation in breast cancer patients with cancer-related fatigue using response shift analyses at subgroup level.

PubMed

Salmon, Maxime; Blanchin, Myriam; Rotonda, Christine; Guillemin, Francis; Sébille, Véronique

2017-11-01

Fatigue is the most prevalent symptom in breast cancer. It might be perceived differently among patients over time as a consequence of the differing patients' adaptation and psychological adjustment to their cancer experience which can be related to response shift (RS). RS analyses can provide important insights on patients' adaptation to cancer but it is usually assumed that RS occurs in the same way in all individuals which is unrealistic. This study aimed to identify patients' subgroups in which different RS effects on self-reported fatigue could occur over time using a combination of methods for manifest and latent variables. The FATSEIN study comprised 466 breast cancer patients followed over a 2-year period. Fatigue was measured with the Multidimensional Fatigue Inventory questionnaire (MFI-20) during 10 visits. A novel combination of Mixed Models, Growth Mixture Modeling, and Structural Equation Modeling was used to assess the occurrence of RS in fatigue changes to identify subgroups displaying different RS patterns over time. An increase in fatigue was evidenced over the 8-month follow-up, followed by a decrease between the 8- and 24-month. Four latent classes of patients were identified. Different RS patterns were detected in all latent classes between the inclusion and 8 months (last cycle of chemotherapy). No RS was evidenced between 8- and 24-month. Several RS effects were evidenced in different groups of patients. Women seemed to adapt differently to their treatment and breast cancer experience possibly indicating differing needs for medical/psychological support. © 2017 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.

Adolescent cancer patients' perceived quality of cancer care: The roles of patient engagement and supporting independence.

PubMed

Siembida, Elizabeth J; Kadan-Lottick, Nina S; Moss, Kerry; Bellizzi, Keith M

2018-04-10

A lack of focus on variation in engagement among cancer populations of differing developmental stages led us to examine the associations between patient engagement, the patient-provider relationship, cognitive development, readiness to transition to adulthood (transitional readiness) and perceived quality of care. A sample of 101 adolescent cancer patients (diagnosed 10-20 years) completed survey items concerning patient engagement, dimensions of the patient-provider relationship, cognitive development, transitional readiness, and demographic characteristics using an iPad/tablet during a routine clinic visit. Patient engagement was not significantly associated with perceived quality of care (b = .02, 95% CI: -0.06, 0.11). Instead, adolescents with providers that supported their independence (b = .34, 95% CI: 0.17, 0.52) were significantly more likely to perceive higher quality care. Supportive patient-provider relationships are an integral part of adolescents' perceptions of quality of care. Adolescents are still gaining important skills for navigating the medical system, and the patient-provider relationship may provide an important scaffolding relationship to help adolescents build independence in their treatment experience. Identifying potential mechanisms through which adolescents can provide their opinion, ask questions, and participate in their treatment plan will help in supporting adolescent independence and improve quality of care. Published by Elsevier B.V.

Health behaviors in family members of patients completing cancer treatment.

PubMed

Mazanec, Susan R; Flocke, Susan A; Daly, Barbara J

2015-01-01

To describe the impact of the cancer experience on the health behaviors of survivors' family members and to determine factors associated with family members' intentions for health behavior change. Descriptive, cross-sectional, correlational. A National Cancer Institute-designated comprehensive cancer center in the midwestern United States. 39 family members and 50 patients with diagnoses of breast, colorectal, head and neck, lung, or prostate cancer who were completing definitive cancer treatment. Patients and family members were approached in the clinic at three weeks or fewer before the completion of their course of treatment. Family members completed surveys and a structured interview in person or via telephone. Intention, perceived benefit, and confidence about eating a healthful diet, physical activity, and smoking cessation; emotional distress; and family cohesion, conflict, and expressiveness. Family members had high ratings for intention, perceived benefit, and confidence related to the behaviors of eating a healthful diet and performing 30 minutes of daily moderate-intensity physical activity. They also had high ratings for the extent to which the cancer experience had raised awareness of their cancer risk and made them consider undergoing screening tests for cancer; ratings were lower for making changes in their health behaviors. Family members expressed strong intentions to engage in health-promoting behaviors related to physical activity and nutrition at the post-treatment transition. Oncology nurses are in a key position to engage family members and patients in behavior change. Nurses should assess family members at the completion of treatment for distress and provide interventions to influence the trajectory of distress in survivorship.

Randomized controlled trial of patient navigation for newly diagnosed cancer patients: effects on quality of life.

PubMed

Hendren, Samantha; Griggs, Jennifer J; Epstein, Ronald; Humiston, Sharon; Jean-Pierre, Pascal; Winters, Paul; Sanders, Mechelle; Loader, Starlene; Fiscella, Kevin

2012-10-01

Patient navigation is a promising intervention to ameliorate cancer health disparities. This study objective was to measure patient navigation effects on cancer-specific quality of life (QOL) among patients with newly diagnosed cancer. A randomized controlled trial of patient navigation was conducted in Rochester, NY. Patients with breast cancer and colorectal cancer were randomly assigned to receive a patient navigation intervention or usual care. QOL was measured at baseline and four subsequent time points, using the validated Functional Assessment of Cancer Therapy (FACT-B, FACT-C) instruments. Among 319 randomized patients (165 patient navigation, 154 control), median age was 57 years and 32.5% were from minority race/ethnicity groups. Patient navigation and control groups were comparable on baseline factors, except home ownership versus renting (more home ownership among controls, P = 0.05) and race (more whites among controls, P = 0.05). Total and subscale FACT scores did not differ between groups when analyzed as a change from baseline to 3 months, or at various time points. The emotional well-being subscale change from baseline approached significance (better change among patient navigation group, P = 0.05). Time trends of QOL measures did not differ significantly between groups. Adjustment for baseline patient factors did not reveal a benefit of patient navigation on QOL. In this randomized trial of patient navigation, there was no statistically significant effect on disease-specific QOL. These results suggest that patient navigation may not affect QOL during cancer treatment, that social/medical support are adequate in this study's setting, or that the trial failed to target patients likely to experience QOL benefit from patient navigation. 2012 AACR

Stigmatic and Sympathetic Attitudes Toward Cancer Patients Who Smoke: A Qualitative Analysis of an Online Discussion Board Forum.

PubMed

Luberto, Christina M; Hyland, Kelly A; Streck, Joanna M; Temel, Brandon; Park, Elyse R

2016-12-01

A significant minority of patients continue to smoke after a cancer diagnosis. Cancer patients who smoke experience stigma that can negatively impact health outcomes. We explored publicly shared perspectives about cancer patients who continued to smoke post-diagnosis. An online news article, published in January 2012, summarized the findings of smoking prevalence among patients with lung cancer and colorectal cancer enrolled in the Cancer Care Outcomes Research and Surveillance Consortium trial. In response, written comments were posted on the articles' public discussion board. Applying principles of grounded theory, we conducted a document analysis and established a conceptual framework to develop a model by which to explain factors underlying stigmatic and sympathetic attitudes toward cancer survivors who continue to smoke. Personal experiences with cancer, smoking, and statistical literacy were found to influence beliefs about cancer and smoking, which in turn influenced stigmatic or sympathetic attitudes. More sympathetic attitudes were expressed by individuals who had personal experiences with smoking, believed cancer is multicausal, identified smoking as an addiction, or considered extrinsic factors responsible for smoking. Individuals who did not have personal experiences with cancer or smoking, had low statistical literacy, believed that smoking necessarily and directly causes cancer, and focused on intrinsic responsibilities for smoking tended to express more stigmatic attitudes. The current findings raise awareness and provide insight into stigma against cancer survivors who smoke and can help inform strategies for reducing stigma against this vulnerable group. This study helps raise awareness of stigma toward cancer patients who smoke and provides insight into the processes that may influence stigmatic as compared to sympathetic attitudes toward these patients. Results suggest that population-based strategies to educate the public regarding the nature of

Novel temperature-controlled RFA probe for treatment of blocked metal biliary stents in patients with pancreaticobiliary cancers: initial experience.

PubMed

Nayar, Manu K; Oppong, Kofi W; Bekkali, Noor L H; Leeds, John S

2018-05-01

 Radiofrequency ablation (RFA) is used to treat blocked biliary stents in patients with pancreaticobiliary (PB) tumors with varying results. We report our experience with a novel temperature-controlled probe for treatment of blocked metal stents.  Patients with histologically proven PB cancers and a blocked biliary stents were treated using ELRATM electrode (Taewoong Medical) under fluoroscopic guidance. Demographics, clinical outcome, stricture diameter improvements, complications and mortality at 30 days were prospectively recorded.  Nine procedures were performed on seven patients (4 male, 3 female); mean age 65.33 (range 56 - 82 years). Mean stricture diameter prior to RFA was 1.13 mm (SD ± 0.54) and 4.42 mm (SD ± 1.54) following RFA ( P  < 0.0001). Five of seven patients (71 %) required additional stents to ensure optimal drainage. There were no procedure-related complications. Mean follow-up was 193.55 days (range 31 - 540) and three of nine patients (33 %) died due to terminal cancer. These are the first reported data on use of a temperature-controlled RFA catheter in humans to treat blocked metal biliary stents. The device is safe but further randomized trials are required to establish the efficacy and survival benefits of this probe.

Health technology assessment-based development of a Spanish breast cancer patient decision aid.

PubMed

Izquierdo, Fátima; Gracia, Javier; Guerra, Mercedes; Blasco, Juan Antonio; Andradas, Elena

2011-10-01

The aim of this study was to develop a breast cancer Patient Decision Aid (PDA), using a Health Technology Assessment (HTA) process, to assist patients in their choice of therapeutic options, and to promote shared decision making among patients, healthcare professionals, and other interested parties. A systematic review (SR) was conducted of existing breast cancer patient Decision Aids encountered in the main scientific journal databases and on institutional Web sites that create PDAs, together with a Qualitative Research (QR) study, using semi-structured interviews and focus group with stakeholders (patients, family members, and health professionals), with the aim of developing a PDA for breast cancer. The SR shows that PDAs in breast cancer not only increase patient knowledge of the illness, leading to more realistic expectations of treatment outcomes, but also reduce passivity in the decision-making process and facilitate the appropriate choice of treatment options in accordance with patient medical and personal preferences. The analysis of QR shows that both breast cancer patients and healthcare professionals agree that surgery, adjuvant treatments, and breast reconstruction represent the most important decisions to be made. Worry, anxiety, optimism, and trust in healthcare professionals were determined as factors that most affected patients subjective experiences of the illness. This HTA was used as the basis for developing a PDA software program. The SR and QR used in the development of this PDA for breast cancer allowed patients to access information, gain additional knowledge of their illness, make shared treatment decisions, and gave healthcare professionals a deeper insight into patient experiences of the disease.

[Impact of glutamine, eicosapntemacnioc acid, branched-chain amino acid supplements on nutritional status and treatment compliance of esophageal cancer patients on concurrent chemoradiotherapy and gastric cancer patients on chemotherapy].

PubMed

Cong, Minghua; Song, Chenxin; Zou, Baohua; Deng, Yingbing; Li, Shuluan; Liu, Xuehui; Liu, Weiwei; Liu, Jinying; Yu, Lei; Xu, Binghe

2015-03-17

To explore the effects of glutamine, eicosapntemacnioc acid (EPA) and branched-chain amino acids supplements in esophageal cancer patients on concurrent chemoradiotherapy and gastric cancer patients on chemotherapy. From April 2013 to April 2014, a total of 104 esophageal and gastric carcinoma patients on chemotherapy or concurrent chemoradiotherapy were recruited and randomly divided into experimental and control groups. Both groups received dietary counseling and routine nutritional supports while only experimental group received supplements of glutamine (20 g/d), EPA (3.3 g/d) and branched-chain amino acids (8 g/d). And body compositions, blood indicators, incidence of complications and completion rates of therapy were compared between two groups. After treatment, free fat mass and muscle weight increased significantly in experiment group while decreased in control group (P < 0.05). And albumin, red blood cell count, white blood cell count and blood platelet count remained stable in experiment group while declined significantly in control group. During treatment, compared to control group, the incidences of infection-associated complication were lower (6% vs 19%, P < 0.05) and the completion rates of therapy were significantly higher in experiment group (96% vs 83%, P < 0.05). Supplements of glutamine, EPA and branched-chain amino acids can help maintain nutrition status, decrease the complications and improve compliance for esophageal cancer patients on concurrent chemo-radiotherapy and gastric cancer patients on postoperative adjuvant chemotherapy.

The role of patients' families in treatment decision-making among adult cancer patients in the Sultanate of Oman.

PubMed

Al-Bahri, A; Al-Moundhri, M; Al-Mandhari, Z; Al-Azri, M

2018-04-17

There are limited numbers of studies available in Middle Eastern Arabic countries regarding participation of family ‎members in cancer treatment decision-making (TDM). The aim of this study was to evaluate the role of family members' ‎in TDM among ‎adult Omani cancer ‎patients. A cross-sectional study was conducted in two main teaching hospitals. All adult Omani patients who were diagnosed with cancer and their nominated family members were invited to ‎participate. A tool developed by Cancer Care Outcomes Research and ‎Surveillance Consortium was used to identify the level of family involvement in TDM. A weighted kappa (k) was significant (p < .001) and showed almost full agreement between the patients' experiences and their preferences ‎(‎k = .98) and between family members' experiences and their preferences ‎(‎k = .96) ‎‎of family involvement in TDM. Binary logistic regression showed significant family-controlled TDM if the patient communicated‎ less with oncologists (OR = 9.89; 95% CI: 3.79-25.81); financial dependence of the patient on their families ‎(OR = 6.21; 95% CI: 2.19-17.10‎); and advanced stages of cancer at the time of diagnosis ‎(OR = 3.10; 95% CI: 1.37-7.03). Oncologists in Oman should be aware of the strong family involvement in TDM to allow a successful cancer treatment. © 2018 John Wiley & Sons Ltd.

Sleep disruption in breast cancer patients and survivors.

PubMed

Palesh, Oxana; Aldridge-Gerry, Arianna; Ulusakarya, Ayhan; Ortiz-Tudela, Elisabet; Capuron, Lucile; Innominato, Pasquale F

2013-12-01

Sleep disruption is prevalent in patients and survivors of breast cancer. Most patients undergoing chemotherapy will experience transient sleep disruption, and nearly 60% will have chronic sleep problems. Numerous factors contribute to sleep disruption in women diagnosed with breast cancer. Sleep disruption is a consequence of several biological alterations, including circadian disruption and immune and metabolic deregulations. These systems also play significant roles in the control and progression of breast cancer. Sleep disruption is associated with many side effects and psychiatric and medical comorbidities. This article discusses the relationship between stress and posttraumatic stress disorder, depression and fatigue, and how sleep disturbance might be the cause or consequence of these disorders. Current evidence for management of sleep disturbance in breast cancer and high chronic use of hypnotic medication in this population is also discussed. Finally, the differences in management of sleep disturbance during acute cancer care and during the survivorship phase are discussed. More research is needed on accurate and timely assessment of sleep disturbance associated with breast cancer, and additional tailored approaches for the management of sleep problems in breast cancer should be developed.

Adjustment to Cancer: Anxiety and Distress (PDQ®)—Patient Version

Cancer.gov

Expert-reviewed information summary about the difficult emotional responses many cancer patients experience. This summary focuses on normal adjustment issues, psychosocial distress, and adjustment disorders.

Lived experiences of everyday life during curative radiotherapy in patients with non-small-cell lung cancer: A phenomenological study.

PubMed

Petri, Suzanne; Berthelsen, Connie B

2015-01-01

To explore and describe the essential meaning of lived experiences of the phenomenon: Everyday life during curative radiotherapy in patients with non-small-cell lung cancer (NSCLC). Radiotherapy treatment in patients with NSCLC is associated with severe side effects such as fatigue, anxiety, and reduced quality of life. However, little is known about the patients' experience of everyday life during the care trajectory. This study takes a reflective lifeworld approach using an empirical application of phenomenological philosophy described by Dahlberg and colleagues. A sample of three patients treated with curative radiotherapy for NSCLC was interviewed 3 weeks after the end of radiotherapy treatment about their experiences of everyday life during their treatment. Data were collected in 2014 and interviews and analysis were conducted within the descriptive phenomenological framework. The essential meaning structure of the phenomenon studied was described as "Hope for recovery serving as a compass in a changed everyday life," which was a guide for the patients through the radiotherapy treatment to support their efforts in coping with side effects. The constituents of the structure were: Radiotherapy as a life priority, A struggle for acceptance of an altered everyday life, Interpersonal relationships for better or worse, and Meeting the health care system. The meaning of hope was essential during radiotherapy treatment and our results suggest that interpersonal relationships can be a prerequisite to the experience of hope. "Hope for recovery serving as a compass in a changed everyday life," furthermore identifies the essentials in the patients' assertive approach to believing in recovery and thereby enabling hope in a serious situation.

Waiting times for cancer patients in Sweden: A nationwide population-based study.

PubMed

Robertson, Stephanie; Adolfsson, Jan; Stattin, Pär; Sjövall, Annika; Winnersjö, Rocio; Hanning, Marianne; Sandelin, Kerstin

2017-05-01

The reported long waiting times for cancer patients have mostly been related to prognostic outcome and less to patient-related experience to outcome. We assessed waiting times for patients with cancer of the breast, prostate, colon or rectum in Sweden. The median time from referral to start of treatment was assessed using data from clinical cancer registers for patients who received curative treatment during 2011, 2012 and 2013. The median overall waiting time in different counties ranged from 7 to 28 days for breast cancer, from 117 to 280 days for prostate cancer, from 27 to 64 days for colon cancer and from 48 to 80 days for rectal cancer. For the entire nation, the median time from referral to start of treatment remained unchanged from 2011 to 2013 for each cancer diagnosis. Large variations were found in waiting times between different counties in Sweden and between different types of cancer. The long waiting times identified in this study emphasize the need to improve national programmes for more rapid diagnosis and treatment.

Performance of activities of daily living among hospitalized cancer patients.

PubMed

Lindahl-Jacobsen, Line; Hansen, Dorte Gilså; Wæhrens, Eva Ejlersen; la Cour, Karen; Søndergaard, Jens

2015-03-01

Many cancer patients report unmet rehabilitation needs. Rehabilitation may include activities of daily living (ADL) tasks, but little is known about how cancer patients perform these tasks and how they prioritize their daily activities. Hence, this study aims to identify and characterize ADL task performance problems among a group of adult disabled hospitalized cancer patients using interview and questionnaire data. Cross-sectional study on prevalence of ADL task performance problems experienced by disabled hospitalized cancer patients using the Activities of Daily Living Questionnaire (ADL-Q) (n = 118) and the Canadian Occupational Performance Measure (COPM) (n = 55). All 118 patients reported problems with ADL task performance. Based on the ADL-Q patients reported more problems within instrumental (I-)ADL than personal (P-)ADL. In both I-ADL and P-ADL the results differed between women and men. There was significant overlap between problems identified using the COPM and the ADL-Q instruments. RESULTS from the COPM showed that 65% of problems were related to self-care, 25% to leisure, and 19% to productivity. Using both instruments identified more ADL problems than when using only one of the instruments. Adult hospitalized disabled cancer patients experience a high degree and variation in difficulties performing ADL, illustrating the need for a comprehensively planned assessment of problems and needs.

Effects of rehabilitation among patients with advances cancer: a systematic review.

PubMed

Salakari, Minna R J; Surakka, Tiina; Nurminen, Raija; Pylkkänen, Liisa

2015-05-01

In parallel with the rising incidence of cancer and improved treatment, there is a continuous increase in the number of patients living with cancer as a chronic condition. Many cancer patients experience long-term disability and require continuous oncological treatment, care and support. The aim of this review is to evaluate the most recent data on the effects of rehabilitation among patients with advanced cancer. A systematic review was conducted according to Fink's model. Only randomized controlled trials (RCTs) published in 2009-2014 were included. Medline/PubMed and Cochrane databases were searched; five groups of keywords were used. The articles were evaluated for outcome and methodological quality. Thirteen RCTs (1169 participants) were evaluated. Most studies were on the effects of physical exercise in patients with advanced cancer (N = 7). Physical exercise was associated with a significant improvement in general wellbeing and quality of life. Rehabilitation had positive effects on fatigue, general condition, mood, and coping with cancer. Rehabilitation is needed also among patients with advanced disease and in palliative care. Exercise improves physical performance and has positive effects on several other quality of life domains. More data and RCTs are needed, but current evidence gives an indication that rehabilitation is suitable and can be recommended for patients living with advanced cancer.

[Case managers experience improved trajectories for cancer patients after implementation of the case manager function].

PubMed

Axelsen, Karina Rahbek; Nafei, Hanne; Jakobsen, Stine Finne; Gandrup, Per; Knudsen, Janne Lehmann

2014-10-13

Case managers are increasingly used to optimize trajectories for patients. This study is based on a questionnaire among case managers in cancer care, aiming at the clarification of the function and its impact on especially patient safety, when handing over the responsibility. The results show a major variation in how the function is organized, the level of competence and the task to be handled. The responsibility has in general been narrowed to department level. Overall, the case managers believe that the function has optimized pathways for cancer patients and improved safety, but barriers persist.

Patient Navigators: Agents of Creating Community-Nested Patient-Centered Medical Homes for Cancer Care

PubMed Central

Simon, Melissa A.; Samaras, Athena T.; Nonzee, Narissa J.; Hajjar, Nadia; Frankovich, Carmi; Bularzik, Charito; Murphy, Kara; Endress, Richard; Tom, Laura S.; Dong, XinQi

2016-01-01

Patient navigation is an internationally utilized, culturally grounded, and multifaceted strategy to optimize patients’ interface with the health-care team and system. The DuPage County Patient Navigation Collaborative (DPNC) is a campus–community partnership designed to improve access to care among uninsured breast and cervical cancer patients in DuPage County, IL. Importantly, the DPNC connects community-based social service delivery with the patient-centered medical home to achieve a community-nested patient-centered medical home model for cancer care. While the patient navigator experience has been qualitatively documented, the literature pertaining to patient navigation has largely focused on efficacy outcomes and program cost effectiveness. Here, we uniquely highlight stories of women enrolled in the DPNC, told from the perspective of patient navigators, to shed light on the myriad barriers that DPNC patients faced and document the strategies DPNC patient navigators implemented. PMID:27594792

Changes in employment status and experience of discrimination among cancer patients: findings from a nationwide survey in Korea.

PubMed

Park, Jae-Hyun; Park, Jong-Hyock; Kim, Sung-Gyeong; Lee, Kyung-Sook; Hahm, Myung-Il

2010-12-01

As the number of working cancer patients increases, workplace discrimination and its relationship to changes in employment status among cancer patients is becoming an increasingly important social concern. The aim of this study is to provide a comprehensive overview of the relationship between changes in employment status and discrimination following a diagnosis of cancer. A total of 748 cancer patients, aged 18 years and older, who were employed before receiving a diagnosis of cancer, were enrolled in this study. Patients were recruited from ten cancer centers in Korea. Sociodemographic data, work-related data, and clinical information, as well as information on changes in employment status and incidences of discrimination, were collected from all patients. A change in employment status was reported by 73.4% of the sample, with unemployment being the most common change (46.4%). Forty-two (5.6%) patients reported that they had experienced discrimination in the workplace. Reports of discrimination were only weakly correlated with changes in employment status, but were significantly correlated with forced unemployment. Additional analyses revealed that being female, being from a lower socioeconomic status group and having a disability were risk-factors for unemployment, while being male, being from a higher socioeconomic status group and having a disability were risk-factors for workplace discrimination or forced unemployment. More attention should be paid to vulnerable who are diagnosed with cancer. An individualized and culture-based approach should be taken to minimize undesirable changes in employment status and to reduce discrimination among patients receiving a diagnosis of cancer. Copyright © 2010 John Wiley & Sons, Ltd.

Attitudes and Perceptions of Cancer Patients Toward Biospecimen Donation for Cancer Research: A Cross-Sectional Survey Among Chinese Cancer Patients.

PubMed

He, Na; Guo, Yan; He, Min; Qiang, Wanmin; Li, Haixin

2017-08-01

High-quality biospecimen collection from consented patients is crucial for cancer research activities. Patients' attitudes and willingness toward specimen donation influence high-quality biospecimen collection for cancer research activities. We carried out a cross-sectional study among randomly selected patients from 11 cancer departments of Tianjin Medical University Cancer Institute and Hospital between August 2014 and August 2015. A total of 784 patients were included to complete a 30-item self-administered survey. We evaluated the patients' willingness to consider providing leftover samples and additional samples for cancer research purposes. Among 784 patients, 683 (87.1%) and 653 (83.3%) were willing to donate leftover tissue and surplus blood after diagnosis, respectively. Six hundred thirty-one (80.5%) were favorably disposed to consider donating both tissue and blood samples for future cancer research. Female patients showed less willingness to donate biospecimens or related clinical data for research. First-hospitalized or older patients were less willing to provide leftover biospecimens or additional blood samples or even clinical data for research. By contrast, patients with a higher education level were more likely to donate leftover tissues after biopsy or surgery for research activities. Most Chinese cancer patients were willing to consider donating blood and tissue samples for cancer research. Several factors, including age, gender, first hospitalization, and education level, can influence their willingness to donate biospecimens. We need to provide proper education to increase understanding of patients in biobanking activities. This study provides novel empirical data on the likelihood of donating surplus and additional biospecimens and clinical health information among Chinese cancer patients.

Effective patient-provider communication about sexual concerns in breast cancer: a qualitative study.

PubMed

Reese, Jennifer Barsky; Beach, Mary Catherine; Smith, Katherine Clegg; Bantug, Elissa T; Casale, Kristen E; Porter, Laura S; Bober, Sharon L; Tulsky, James A; Daly, Mary B; Lepore, Stephen J

2017-10-01

Breast cancer patients commonly experience sexual concerns, yet rarely discuss them with clinicians. The study examined patient and provider experiences and preferences related to communication about breast cancer-related sexual concerns with the goal of informing intervention development. Patient data (n = 28) were derived from focus groups and interviews with partnered and unpartnered women treated for breast cancer reporting sexual concerns. Provider data (n = 11) came from interviews with breast cancer oncologists and nurse practitioners. Patient and provider data were analyzed separately using the framework method of qualitative analysis. Findings revealed individual and institutional barriers to effective communication about sexual concerns and highlighted key communication facilitators (e.g., a positive patient-provider relationship, patient communication as a driver of provider communication, and vice versa). Patients expressed preferences for open, collaborative communication; providers expressed preferences for focused intervention targets (identifying concerns, offering resources/referrals) and convenient format. A model of effective communication of sexual concerns was developed to inform communication interventions. Findings suggest that to improve patient-provider communication about sexual concerns, knowledge and skills-based interventions that activate patients and that equip providers for effective discussions about sexual concerns are needed, as are institutional changes that could incentivize such discussions.

Determinants and implications of cancer patients' psychosocial needs.

PubMed

Ernstmann, N; Neumann, M; Ommen, O; Galushko, M; Wirtz, M; Voltz, R; Hallek, M; Pfaff, H

2009-11-01

Cancer patients often experience distress. However, the majority of newly diagnosed patients gradually adapt to the crisis. When symptoms of distress and anxiety persist over months, patients require psychosocial support. The aim of the present study was to determine the proportion of cancer patients who indicate the need for psychosocial support and to identify sociodemographic, psychological and illness-related factors predicting the need for psychosocial support in a German sample. The cross-sectional retrospective study was administered to 710 cancer patients who had been inpatients at the University Hospital of Cologne. The response rate was 49.5%. Patients suffering from bronchial, oesophageal, colorectal, breast, prostate and skin cancer participated in the study. The severity of depressive symptoms was assessed using the German version of the Major Depression Inventory. The level of anxiety was assessed with the state subscale of the German version of the State-Trait Anxiety Inventory. To measure the functional aspects of health-related quality of life, the scales "physical functioning", "role functioning", "emotional functioning", "cognitive functioning" and "role functioning" of the European Organisation for Research and Treatment of Cancer QLQ-C30 Questionnaire (EORTC QLQ-C30) were used. Of the cancer patients, 18.9% indicate an unmet need for psychosocial support and 9.5% are actually using psychosocial services. In a multiple logistic regression, significant indicators of the need for psychosocial support are gender [p = 0.014; standardised effect coefficient (sc) = 1.615] and emotional functioning (p < 0.001; sc = 1.533). The estimated model has a specificity of 92.2% and a sensitivity of 54.0%. Almost a third of the cancer patient population indicates an unmet need for psychosocial support or is actually using psychosocial services. Emotional functioning is a central predictor of the requirement for psychosocial support. Women are emotionally more

Finding Medical Care for Colorectal Cancer Symptoms: Experiences among Those Facing Financial Barriers

ERIC Educational Resources Information Center

Thomson, Maria D.; Siminoff, Laura A.

2015-01-01

Financial barriers can substantially delay medical care seeking. Using patient narratives provided by 252 colorectal cancer patients, we explored the experience of financial barriers to care seeking. Of the 252 patients interviewed, 84 identified financial barriers as a significant hurdle to obtaining health care for their colorectal cancer…

Associations between United States Acculturation and the End-of-Life Experience of Caregivers of Patients with Advanced Cancer

PubMed Central

Nilsson, Matthew; Loggers, Elizabeth Trice; Paulk, Elizabeth; Stieglitz, Heather; Kupersztoch, Yankel M.; Prigerson, Holly G.

2009-01-01

Abstract Background Cultural beliefs and values influence treatment preferences for and experiences with end-of-life (EOL) care among racial and ethnic groups. Within-group variations, however, may exist based on level of acculturation. Objectives To examine the extent to which EOL treatment factors (EOL treatment preferences and physician–caregiver communication) and select psychosocial factors (mental health, complementary therapies, and internal and external social support) differ based on the level of acculturation of caregivers of patients with advanced cancer. Methods One hundred sixty-seven primary caregivers of patients with advanced cancer were interviewed as part of the multisite, prospective Coping with Cancer Study. Results Caregivers who were less acculturated were more positively predisposed to use of a feeding tube at EOL (odds ratio [OR] 0.99 [p = 0.05]), were more likely to perceive that they received too much information from their doctors (OR 0.95 [p = 0.05]), were less likely to use mental health services (OR 1.03 [p = 0.003] and OR 1.02 [p = 0.02]), and desire additional services (OR 1.03 [p = 0.10] to 1.05 [p = 0.009]) than their more acculturated counterparts. Additionally, caregivers who were less acculturated cared for patients who were less likely to report having a living will (OR 1.03 [p = 0.0003]) or durable power of attorney for health care (OR 1.02 [p = 0.007]) than more acculturated caregivers. Caregivers who were less acculturated felt their religious and spiritual needs were supported by both the community (β −0.28 [p = 0.0003]) and medical system (β −0.38 [p < 0.0001]), had higher degrees of self-efficacy (β −0.22 [p = 0.005]), and had stronger family relationships and support (β −0.27 [p = 0.0004]). Conclusions The level of acculturation of caregivers of patients with advanced cancer does contribute to differences in EOL preferences and EOL medical decision

Breast cancer navigation and patient satisfaction: exploring a community-based patient navigation model in a rural setting.

PubMed

Hook, Ann; Ware, Laurie; Siler, Bobbie; Packard, Abbot

2012-07-01

To explore patient satisfaction among newly diagnosed patients with breast cancer in a rural community setting using a nurse navigation model. Nonexperimental, descriptive study. Large, multispecialty physician outpatient clinic serving about 150 newly diagnosed patients with breast cancer annually at the time of the study. 103 patients using nurse navigation services during a two-year period. A researcher-developed 14-item survey tool using a Likert-type scale was mailed to about 300 navigated patients. Nurse navigation and patient satisfaction. The majority of participants (n = 73, 72%) selected "strongly agree" in each survey statement when questioned about the benefits of nurse navigation. Patients receiving nurse navigation for breast cancer are highly satisfied with the services offered in this setting. Findings from this study offer insight regarding the effectiveness of an individualized supportive care approach to nurses and providers of oncology care. That information can be used to guide the implementation of future nurse navigation programs, determine effective methods of guiding patients through the cancer experience, and aid in promoting the highest standard of oncology care.

User-experiences with a web-based self-help intervention for partners of cancer patients based on acceptance and commitment therapy and self-compassion: a qualitative study.

PubMed

Köhle, Nadine; Drossaert, Constance H C; Jaran, Jasmijn; Schreurs, Karlein M G; Verdonck-de Leeuw, Irma M; Bohlmeijer, Ernst T

2017-02-28

Partners of cancer patients are the cornerstone of supportive cancer care. They assume different roles and responsibilities that optimally support the patient. Such support is highly demanding, and many partners report (mental) health problems. However, many of them do not use professional supportive care themselves. Offering a Web-based self-help intervention based on Acceptance and Commitment Therapy (ACT) and self-compassion could be an important resource to support this group. This qualitative study aimed to examine user-experiences with a Web-based self-help intervention based on ACT and self-compassion among partners of cancer patients. Individual in-depth interviews, about partners' appreciation of the intervention and lessons learned, were conducted with 14 partners of cancer patients who used the Web-based self-help intervention. Interviews were audio-recorded, transcribed verbatim and analyzed by three independent coders both deductively and inductively. In general, partners appreciated the intervention, however, they also expressed ambivalent feelings towards peer support, the content of the feedback of their counselor, and the 'tunneled' structure of the intervention. The majority of the partners reported being more self-compassionate accepting that they experienced negative thoughts and feelings, they reported that they learned to increase the distance between their thoughts and themselves, they indicated being more aware of their personal values, and they thought that they were better able to commit to those values. They also reported other (non-specific) helpful processes such as insight and acknowledgement, positivity, the possibility to tell their story, time for themselves, and feeling closer and more connected with their partner (the patient). Partners of cancer patients indicated to appreciate the Web-based self-help intervention based on ACT and self-compassion. They felt that the intervention helped them to cope with negative emotions

Pre-counseling education for low literacy women at risk of Hereditary Breast and Ovarian Cancer (HBOC): patient experiences using the Cancer Risk Education Intervention Tool (CREdIT).

PubMed

Joseph, Galen; Beattie, Mary S; Lee, Robin; Braithwaite, Dejana; Wilcox, Carolina; Metrikin, Maya; Lamvik, Kate; Luce, Judith

2010-10-01

The Cancer Risk Education Intervention Tool (CREdIT) is a computer-based (non-interactive) slide presentation designed to educate low-literacy, and ethnically and racially diverse public hospital patients at risk of Hereditary Breast and Ovarian Cancer (HBOC) about genetics. To qualitatively evaluate participants' experience with and perceptions of a genetic education program as an adjunct to genetic counseling, we conducted direct observations of the intervention, semi-structured in person interviews with 11 women who viewed CREdIT, and post-counseling questionnaires with the two participating genetic counselors. Five themes emerged from the analysis of interviews: (1) genetic counseling and testing for breast/ovarian cancer was a new concept; (2) CREdIT's story format was particularly appealing; (3) changes in participants' perceived risk for breast cancer varied; (4) some misunderstandings about individual risk and heredity persisted after CREdIT and counseling; (5) the context for viewing CREdIT shaped responses to the presentation. Observations demonstrated ways to make the information provided in CREdIT and by genetic counselors more consistent. In a post-session counselor questionnaire, counselors' rating of the patient's preparedness before the session was significantly higher for patients who viewed CREdIT prior to their appointments than for other patients. This novel educational tool fills a gap in HBOC education by tailoring information to women of lower literacy and diverse ethnic/racial backgrounds. The tool was well received by interview participants and counselors alike. Further study is needed to examine the varied effects of CREdIT on risk perception. In addition, the implementation of CREdIT in diverse clinical settings and the cultural adaptation of CREdIT to specific populations reflect important areas for future work.

Cachexia among US cancer patients.

PubMed

Arthur, Susan T; Van Doren, Bryce A; Roy, Debosree; Noone, Joshua M; Zacherle, Emily; Blanchette, Christopher M

2016-09-01

Cancer cachexia is a debilitating condition and results in poor prognosis. The purpose of this study was to assess hospitalization incidence, patient characteristics, and medical cost and burden of cancer cachexia in the US. This study used a cross-sectional analysis of the Nationwide Inpatient Sample (NIS) for 2009. Five cancers reported to have the highest cachexia incidence were assessed. The hospitalization incidence related to cachexia was estimated by cancer type, cost and length of stay were compared, and descriptive statistics were reported for each cancer type, as well as differences being compared between patients with and without cachexia. Risk of inpatient death was higher for patients with cachexia in lung cancer (OR = 1.32; CI = 1.20-1.46) and in all cancers combined (OR = 1.76; CI = 1.67-1.85). The presence of cachexia increased length of stay in lung (IRR = 1.05; CI = 1.03-1.08), Kaposi's sarcoma (IRR = 1.47; CI = 1.14-1.89) and all cancers combined (IRR = 1.09; CI = 1.08-1.10). Additionally, cachectic patients in the composite category had a longer hospitalization stay compared to non-cachectic patients (3-9 days for those with cachexia and 2-7 days for those without cachexia). The cost of inpatient stay was significantly higher in cachexic than non-cachexic lung cancer patients ($13,560 vs $13 190; p < 0.0001), as well as cachexic vs non-cachexic cancer patients in general (14 751 vs 13 928; p < 0.0001). Cachexia increases hospitalization costs and length of stay in several cancer types. Identifying the medical burden associated with cancer cachexia will assist in developing an international consensus for recognition and coding by the medical community and ultimately an effective treatment plans for cancer cachexia.

Patient Navigation from the Paired Perspectives of Cancer Patients and Navigators: A Qualitative Analysis

PubMed Central

Yosha, Amanat M.; Carroll, Jennifer K.; Hendren, Samantha; Salamone, Charcy M.; Sanders, Mechelle; Fiscella, Kevin; Epstein, Ronald M.

2011-01-01

Objective Patient navigation for cancer care assesses and alleviates barriers to health care services. We examined paired perspectives of cancer patients and their navigators to examine the process of patient navigation. We explored the strengths, limitations, and our own lessons learned about adopting the novel methodology of multiperspective analysis. Methods As part of a larger RCT, patients and navigators were interviewed separately. We reviewed interviews with 18 patient-navigator dyads. Dyad summaries were created that explicitly incorporated both patient and navigator perspectives. Emerging themes and verbatim quotations were reflected in the summaries. Results Paired perspectives were valuable in identifying struggles that arose during navigation. These were represented as imbalanced investment and relational amelioration. Patients and navigators had general consensus about important patient needs for cancer care, but characterized these needs differently. Conclusion Our experience with multiperspective analysis revealed a methodology that delivers novel relational findings, but is best conducted de novo rather than as part of a larger study. Practice Implications Multiperspective analysis should be more widely adopted with clear aims and analytic strategy that strengthen the ability to reveal relational dynamics. Navigation training programs should anticipate navigator struggles and provide navigators with tools to manage them. PMID:21255958

Cultural perceptions in cancer care among African-American and Caucasian patients.

PubMed Central

Matsuyama, Robin K.; Grange, Christina; Lyckholm, Laurie J.; Utsey, Shawn O.; Smith, Thomas J.

2007-01-01

PURPOSE: This exploratory study examined perceptions and beliefs of African Americans and Caucasians related to cancer care. Understanding belief systems and cultures optimizes cancer treatment and care delivery to ethnic minority individuals. PATIENTS AND METHODS: Focus groups were conducted with 39 African-American and Caucasian cancer patients. Data analysis included whole group analysis with a team of five researchers. RESULTS: Regardless of ethnicity, cancer patients share many of the same emotions and experiences, and want complete information and quality care. Differences were also apparent. African-American participants were more likely to report increased religious behaviors, believe that healthcare providers demonstrate care with simple actions and provision of practical assistance, and use church and community information sources. Caucasian participants were more likely to report spiritual but not overtly religious changes, and depend on healthcare providers for information. CONCLUSION: Understanding how culture colors perceptions, communication and information requirements is critical to providing effective care to ethnically diverse cancer patients. Findings have implications for professionals understanding ways patients seek information, the role of spirituality and religion in care, and ways healthcare providers demonstrate care. PMID:17987914

Development of a financial literacy course for patients with newly diagnosed cancer.

PubMed

Shankaran, Veena; Linden, Hannah; Steelquist, Jordan; Watabayashi, Kate; Kreizenbeck, Karma; Leahy, Tony; Overstreet, Karen

2017-03-01

Although patients with cancer often face serious financial hardships, few studies have reported on strategies to mitigate this burden. Improving literacy about the financial aspects of cancer care may decrease the negative financial impact of cancer diagnosis and treatment. We obtained input from patient stakeholders on the perceived value and optimal design of a financial literacy program in the advanced cancer setting. Prospective cohort survey.  A series of semi-structured interviews were conducted, during which patients with either colorectal or breast cancer were asked to describe the impact of cancer on their finances and employment, to state their preferences about discussing costs with their providers, and to give input on development of a financial literacy course. Twenty-one patients (76% Caucasian) completed interviews, the majority of whom had Medicare or commercial insurance (71%). Lost income from early retirement or disability was the most financially burdensome experience for 67% of patients. The majority of patients (76%) reported that a financial literacy course would be helpful in navigating the cost of cancer care. Most preferred the course be administered at diagnosis in a live group format. Feedback from patients with cancer supported the development of a group financial literacy course that addresses barriers to discussing cost concerns, employment changes during cancer, and available resources for financial assistance.

Breast Cancer Patients’ Experience of External-Beam Radiotherapy

PubMed Central

Schnur, Julie B.; Ouellette, Suzanne C.; Bovbjerg, Dana H.; Montgomery, Guy H.

2013-01-01

Radiotherapy is a critical component of treatment for the majority of women with breast cancer, particularly those who receive breast conserving surgery. Although medically beneficial, radiotherapy can take a physical and psychological toll on patients. However, little is known about the specific thoughts and feelings experienced by women undergoing breast cancer radiotherapy. Therefore, the study aim was to use qualitative research methods to develop an understanding of these thoughts and feelings based on 180 diary entries, completed during radiotherapy by 15 women with Stage 0-III breast cancer. Thematic analysis identified four primary participant concerns: (a) a preoccupation with time; (b) fantasies (both optimistic and pessimistic) about life following radiotherapy; (c) the toll their side-effect experience takes on their self-esteem; and (d) feeling mystified by radiotherapy. These themes are consistent with previous literature on illness and identity. These findings have implications for the treatment and care of women undergoing breast cancer radiotherapy. PMID:19380502

HIFU therapy for patients with high risk prostate cancer

NASA Astrophysics Data System (ADS)

Solovov, V. A.; Vozdvizhenskiy, M. O.; Matysh, Y. S.

2017-03-01

Objectives. Patients with high-risk prostate cancer undergoing radical prostatectomy, external beam radiation therapy (EBRT) combined with androgen deprivation therapy (ADT) or ADT alone. The widely accepted definition of high-risk prostate was first proposed by D'Amico based on a pretreatment Gleason score of ≥8, clinical stage T3, PSA level ≥20 ng/mL. There is no trial that compares traditional methods of treatment of such patients with HIFU therapy. Here we explored the effectiveness of the HIFU in multimodal treatment for patients with high risk prostate cancer. Materials & Methods. 701 patients with high risk prostate cancer were treated in our center between September 2007 and December 2013. Gleason score were 8-10, stage T3N0M0, age 69 (58-86) years, mean PSA before treatment 43.3 (22.1-92.9) ng/ml, mean prostate volume - 59.3 (38-123) cc. 248 patients were treated by HIFU. We compare this group of patients with patients who undertook EBRT: number 196, and ADT: number 257. Mean follow-up time 58 months (6-72). Results. The 5-year overall survival rates in patients after HIFU were 73.8 %, after EBRT - 63.0 % and after ADT - 18.1%. Conclusions. Our experience showed that HIFU therapy in combined treatment were successful for high risk prostate cancer.

Patient perspectives on quality of life after penile cancer.

PubMed

Mortensen, Gitte Lee; Jakobsen, Jakob Kristian

2013-07-01

Penile cancer (PC) is a rare, but ominous disease. In 50-60% of squamous cell carcinomas of the penis, human papilloma virus infection, particularly with types 16 and 18, is part of the pathogenesis. Depending on cancer invasiveness, PC is treated with local resection of the glans and partial or total penectomy. This quality of life (QoL) study aimed at obtaining in-depth knowledge about patients' experiences with PC. A literature study was carried out to identify relevant topics for a semi-structured interview. Qualitative interviews with four former PC patients were transcribed verbatim and analysed using a medical anthropological approach. The analysis focused on the ways patients frame their disease experiences and relate the physical, sexual and emotional disease impact. Varying degrees of amputation affected the participants' sexual capabilities. Still, three participants (aged 66-72 years) said that their partner relationships were not negatively affected by the disease. In contrast, the impact on sexual function and self-esteem had been devastating to the fourth participant (aged 44 years) who was single and worried about the disease impeding his chance of finding love in life. For all participants, having had a potentially fatal disease put the physical disease impact into perspective. PC may greatly impact the psycho-sexual QoL of PC patients, particularly at a younger age and depending on their partnership status. Disease impact appears to be related to age, overall life situation and the cancer experience. The study was funded by an unrestricted research grant from Sanofi Pasteur MSD. not relevant.

A Qualitative Investigation on Patient Empowerment in Prostate Cancer

PubMed Central

Renzi, Chiara; Fioretti, Chiara; Oliveri, Serena; Mazzocco, Ketti; Zerini, Dario; Alessandro, Ombretta; Rojas, Damaris P.; Jereczek-Fossa, Barbara A.; Pravettoni, Gabriella

2017-01-01

Purpose: Men with prostate cancer often describe low levels of empowerment. eHealth interventions may represent useful tools to deliver care and education and to meet patients' needs within an empowerment framework. In order to design a platform for cancer patients' empowerment within the H2020 iManageCancer project, the perspective of the target population for the platform was assessed. The present study aims to assess the qualitative experience of prostate cancer patients during treatment in order to provide insights for clinical practice with a particular focus on the design of a web platform to promote cancer patients' empowerment. Methods: Ten patients undergoing radiation therapy treatment took part in a semi-structured interview to explore different aspects of patient empowerment. Four main thematic areas were addressed: patient-healthcare providers' communication, decision-making, needs, and resources. A qualitative approach using thematic analysis was followed. Results: Half of the patients reported little to no possibility to share information and questions with healthcare providers. With regards to decision-making, the role of healthcare providers was perceived as directive/informative, but half of the patients perceived to assume an active role in at least one interaction. Difficulties and needs included the choice of the specialist or of the structure after diagnosis, clinicians' support in self-management, surgical consequences, and side effects, preparation for radiation therapy. Resources included family and social support both from a practical and from an emotional perspective, coping style, and work schedule management. Conclusions: These results suggest that relations with healthcare providers should be supported, especially immediately after diagnosis and after surgery. Support to self-management after surgery and at the beginning of radiation therapy treatment also constitutes a priority. The adoption of a personalized approach from the

[Case managers experience improved trajectories for cancer patients after implementation of the case manager function].

PubMed

Axelsen, Karina Rahbek; Nafei, Hanne; Jakobsen, Stine Finne; Gandrup, Per; Knudsen, Janne Lehmann

2015-06-08

Case managers are increasingly used to optimize trajectories for patients. This study is based on a questionnaire among case managers in cancer care, aiming at the clarification of the func­tion and its impact on especially patient safety, when handing over the responsibility. The results show a major variation in how the function is organized, the level of competence and the task to be handled. The responsibility has in general been nar­rowed to department level. Overall, the case managers believe that the function has optimized pathways for cancer patients and improved safety, but barriers persist.

Systematic immunohistochemical screening for Lynch syndrome in colorectal cancer: a single centre experience of 486 patients.

PubMed

Zumstein, Valentin; Vinzens, Fabrizio; Zettl, Andreas; Heinimann, Karl; Koeberle, Dieter; von Flüe, Markus; Bolli, Martin

2016-01-01

Germline mutations in DNA mismatch repair (MMR) genes MLH1, MSH2, MSH6 and PMS2 cause autosomal dominantly inherited Lynch syndrome. Lynch syndrome patients and their families benefit from life-saving intensive cancer surveillance. Approximately one in 30 colorectal cancers arises in the setting of Lynch syndrome. The aim of this study was to assess the detection rate of Lynch syndrome at our institution after introduction of systematic immunohistochemical screening for MMR deficiency in colorectal cancers from 2011 to 2015. Following the recommendations by the Evaluation of Genomic Applications in Practice and Prevention working group all colorectal cancers were immunohistochemically stained for the presence of MMR proteins MLH1, PMS2, MSH2 and MSH6, independent of clinical criteria. In the case of loss of MLH1, the somatic BRAF mutation V600E was assessed with molecular testing and/or immunohistochemistry. Clinical follow-up of potential Lynch syndrome carriers (patients with tumours showing loss of MLH1 expression with absence of BRAFV600E, loss of PMS2, MSH2 or MSH6) was evaluated. Of all patients (n = 486), loss of MMR protein expression was found in 73 (15.0%) tumours. Twenty-eight (6.0%) were classified as potential Lynch syndrome carriers. Of the genetically tested potential Lynch syndrome carriers (10 out of 28 patients), 40% were first diagnosed with Lynch syndrome. Implementation of systematic immunohistochemistry screening for Lynch syndrome showed that 6% of colorectal cancers were potentially Lynch-syndrome related. Tumour board protocols should systematically contain information on MMR status of all colorectal cancers and, in MMR deficient cases, include clear recommendations for genetic counselling for all potential Lynch syndrome patients.

Patient, physician and presentational influences on clinical decision making for breast cancer: results from a factorial experiment.

PubMed

McKinlay, J B; Burns, R B; Durante, R; Feldman, H A; Freund, K M; Harrow, B S; Irish, J T; Kasten, L E; Moskowitz, M A

1997-02-01

This study examines the influence of six patient characteristics (age, race, socioeconomic status, comorbidities, mobility and presentational style) and two physician characteristics (medical specialty and years of clinical experience) on physicians' clinical decision making behaviour in the evaluation treatment of an unknown and known breast cancer. Physicians' variability and certainty associated with diagnostic and treatment behaviour were also examined. Separate analyses explored the influence of these non-medical factors on physicians' cognitive processes. Using a fractional factorial design, 128 practising physicians were shown two videotaped scenarios and asked about possible diagnoses and medical recommendations. Results showed that physicians displayed considerable variability in response to several patient-based factors. Physician characteristics also emerged as important predictors of clinical behaviour, thus confirming the complexity of the medical decision-making process.

Managing, making sense of and finding meaning in advanced illness: a qualitative exploration of the coping and wellbeing experiences of patients with lung cancer.

PubMed

Harrop, Emily; Noble, Simon; Edwards, Michelle; Sivell, Stephanie; Moore, Barbara; Nelson, Annmarie

2017-11-01

Coping plays an essential role in maintaining the wellbeing of patients with cancer. A number of different coping responses and strategies have been identified in the literature. The value and relevance of meaning based coping theory has also been emphasised, including Antonovosky's Sense of Coherence (SoC) theory. Ten patients with advanced lung cancer were interviewed up to three times. A total of twenty in depth interviews were carried out, fully transcribed and data were analysed following a methodology of Interpretative Phenomenological Analysis. Three broad domains were identified to categorise the core life concerns of participants; making sense of and managing one's illness; maintaining daily life and relationships and confronting the future. Within these domains multiple coping themes are identified, which to varying degrees help to maintain patient wellbeing and quality of life. This article considers the relevance of SoC theory for understanding the coping experiences of patients with advanced cancer, and identifies resources and factors likely to support patient coping, with implications for health and social care services. © 2017 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL.

Assessing Patients’ Experiences with Communication Across the Cancer Care Continuum

PubMed Central

Mazor, Kathleen M.; Street, Richard L.; Sue, Valerie M.; Williams, Andrew E.; Rabin, Borsika A.; Arora, Neeraj K.

2016-01-01

Objective To evaluate the relevance, performance and potential usefulness of the Patient Assessment of cancer Communication Experiences (PACE) items. Methods Items focusing on specific communication goals related to exchanging information, fostering healing relationships, responding to emotions, making decisions, enabling self-management, and managing uncertainty were tested via a retrospective, cross-sectional survey of adults who had been diagnosed with cancer. Analyses examined response frequencies, inter-item correlations, and coefficient alpha. Results A total of 366 adults were included in the analyses. Relatively few selected “Does Not Apply”, suggesting that items tap relevant communication experiences. Ratings of whether specific communication goals were achieved were strongly correlated with overall ratings of communication, suggesting item content reflects important aspects of communication. Coefficient alpha was ≥.90 for each item set, indicating excellent reliability. Variations in the percentage of respondents selecting the most positive response across items suggest results can identify strengths and weaknesses. Conclusion The PACE items tap relevant, important aspects of communication during cancer care, and may be useful to cancer care teams desiring detailed feedback. PMID:26979476

Noncutaneous head and neck cancer in solid organ transplant patients: single center experience.

PubMed

Nelissen, Charlotte; Lambrecht, Maarten; Nevens, Frederik; Van Raemdonck, Dirk; Vanhaecke, Johan; Kuypers, Dirk; Pirenne, Jacques; Nuyts, Sandra

2014-04-01

We investigated the incidence and survival of non-cutaneous head and neck cancer (HNC) after solid organ transplantation and identified prognostic factors impacting the outcome after treatment. A retrospective analysis of patients who underwent solid organ transplantation in our institution between 1987 and 2012. Of 5255 organ transplant patients, 48 recipients (0.9%) developed HNC in the posttransplant follow-up period. Liver transplant recipients showed the highest risk. Median follow-up of cancer patients was 46.7 months (range 2.9-256.2 months). Three-year overall survival and disease free survival (DFS) were 70% and 53%. Locoregional control was 67% and 48% at 3 and 5 years, respectively. Smoking and initial AJCC stage were two significant prognostic factors influencing DFS. Non-cutaneous HNC is rare in transplant recipients, but slightly more common after liver transplantation. Outcome after treatment is poor with locoregional recurrence being the main problem. Screening of high risk groups might be relevant. Copyright © 2013 Elsevier Ltd. All rights reserved.

Role of External Beam Radiotherapy in Patients With Advanced or Recurrent Nonanaplastic Thyroid Cancer: Memorial Sloan-Kettering Cancer Center Experience

DOE Office of Scientific and Technical Information (OSTI.GOV)

Terezakis, Stephanie A.; Lee, Kyungmouk S.; Ghossein, Ronald A.

2009-03-01

Purpose: External beam radiotherapy (EBRT) plays a controversial role in the management of nonanaplastic thyroid cancer. We reviewed our institution's outcomes in patients treated with EBRT for advanced or recurrent nonanaplastic thyroid cancer. Methods and Materials: Between April 1989 and April 2006, 76 patients with nonanaplastic thyroid cancer were treated with EBRT. The median follow-up for the surviving patients was 35.3 months (range, 4.2-178.4). The lesions were primarily advanced and included Stage T2 in 5 (7%), T3 in 5 (7%), and T4 in 64 (84%) patients. Stage N1 disease was present in 60 patients (79%). Distant metastases before EBRT weremore » identified in 27 patients (36%). The median total EBRT dose delivered was 6,300 cGy. The histologic features examined included medullary in 12 patients (16%) and nonmedullary in 64 (84%). Of the 76 patients, 71 (93%) had undergone surgery before RT, and radioactive iodine treatment was used in 56 patients (74%). Results: The 2- and 4-year overall locoregional control rate for all histologic types was 86% and 72%, respectively, and the 2- and 4-year overall survival rate for all patients was 74% and 55%, respectively. No significant differences were found in locoregional control, overall survival, or distant metastases-free survival for patients with complete resection, microscopic residual disease, or gross residual disease. Grade 3 acute mucositis and dysphagia occurred in 14 (18%) and 24 (32%) patients, respectively. Late adverse toxicity was notable for percutaneous endoscopic gastrostomy tube use in 4 patients (5%). Conclusion: The results of our study have shown that EBRT is effective for locoregional control of selected locally advanced or recurrent nonanaplastic thyroid malignancies, with acceptable acute toxicity.« less

"What Made Me Unhappy". Experiences of, and Responses to, Lifestyle Changes in Breast Cancer Patients

ERIC Educational Resources Information Center

Bitsika, Vicki; Sharpley, Christopher F.; Christie, David R. H.

2010-01-01

Sixteen breast cancer patients were interviewed about any lifestyle changes they had experienced and their reactions to those changes. Data were collected and analysed via content analysis and then summary tabulations of patient responses until replication of responses was verified across patients. Results indicated that most patients suffered a…

Outcomes of In-Hospital Cardiopulmonary Resuscitation Among Patients With Cancer.

PubMed

Zafar, Waleed; Ghafoor, Irum; Jamshed, Arif; Gul, Sabika; Hafeez, Haroon

2017-04-01

To review all episodes where an emergency code was called in a cancer-specialized hospital in Pakistan and to assess survival to discharge among patients who received a cardiopulmonary resuscitation (CPR). We reviewed demographic and clinical data related to all "code blue" calls over 3 years. Multivariate logistic regression analyses were used to test the association of clinical characteristics with the primary outcome of survival to discharge. A total of 646 code blue calls were included in the analysis. The CPR was performed in 388 (60%) of these calls. For every 20 episodes of CPR among patients with cancer of all ages, only 1 resulted in a patient's survival to discharge, even though in 52.2% episodes there was a return of spontaneous circulation. No association was found between the type of rhythm at initiation of CPR and likelihood of survival to discharge. The proportion of patients with advanced cancer surviving to discharge after in-hospital CPR in a low-income country was in line with the reported international experience. Most patients with cancer who received in-hospital CPR did not survive to discharge and did not appear to benefit from resuscitation. Advance directives by patients with cancer limiting aggressive interventions at end of life and proper documentation of these directives will help in provision of care that is humane and consonant with patients' wishes for a dignified death. Patients' early appreciation of the limited benefits of CPR in advanced cancer is likely to help them formulate such advance directives.

[Sexy cancer--sexuality for cancer patients].

PubMed

Peleg-Nesher, Sharon; Yachini, Brurya; Inbar, Moshe

2009-09-01

Sexuality is a basic need for every human being as long as he or she is alive, irrespective of age or health status. Approximately 23,500 individuals are diagnosed with cancer each year in Israel and join the 120,000 cancer patients currently living in Israel. The results of cancer treatments are traditionally assessed and based on the outcome regarding mortality versus survival. An equally important aspect to be addressed in this assessment must relate to quality of life. One of the more painful insults to the quality of life of cancer patients relates to the deleterious effects on sexuality. This article aims to present physicians with the spectrum of sexuality-related issues which are encountered by cancer patients and their partners, starting from the moment of diagnosis, throughout the various stages of treatment and to provide basic knowledge. Many individuals contracting cancer have difficulty dealing with the issue of sexuality. They are typically embarrassed and feel uneasy when asking health care providers about such a non-life threatening issue. Partners similarly feel both shame and guilt. In many cases sexuality, intimacy and emotional attachment are important aspects and may be essential for survival. Addressing these issues during treatment can provide patients with a sense of security, avoiding embarrassment and further exacerbation of such problems. Unfortunately, little has been done to develop an optimal interventional program, although standard sexual treatments have often been applied. Prospective clinical research and outcomes are missing. The physician can use the well-known PLISSIT model (1978): to provide sexuality involvement on different levels. The very new BETTER model (2004) can help emphasize that cancer treatment and the disease have an influence on intimacy and sexuality.

Cancer Patients' Self-Reported Attitudes About the Internet

PubMed Central

Knobf, M Tish; McCorkle, Ruth

2005-01-01

Background Increasing numbers of cancer patients are using the Internet, but little is known about their attitudes toward online health care. Objective The purpose of this substudy was to analyze cancer patients' attitudes toward online health care. Methods This was a substudy of 41 persons with cancer who used the Internet for health care information and support and who completed the Attitudes Toward Online Health Care (ATOHC) survey. Results The majority of study participants were married, held graduate degrees, and had high incomes. Using a five-point Likert scale, means for the five dimensions of the ATOHC survey were as follows: community and news 3.22 (SD = 1.01), outcomes 3.20 (SD = 1.08), trusted information and advice 2.73 (SD = 0.66), self-efficacy in evaluating information and intention 3.46 (SD = 0.65), and disclosure 3.15 (SD = 1.06). The average response fell between “About half the time” and “Usually.” Favorite websites for content were Medscape and WebMD, while favorite sites for support were WebMD and Mediconsult. Conclusions Respondents were generally eager to obtain and offer cancer information and support online, but they were skeptical of unknown sources. They were comfortable both giving and receiving information and support. Respondents were interested in the experiences of other patients and benefited by their direct and indirect interactions with them. Respondents felt that they coped better with their illness and experienced less uncertainty and anxiety as a result of their online experiences. They reported a certain level of trust, primarily for established reputable sources of information, and they were confident in their ability to evaluate the information, including research reports. In addition, cancer patients displayed a healthy skepticism when presented with the option of divulging their personal health information; however, they were willing to provide personal details if, as a result, a website provided them with

Radiology as the Point of Cancer Patient and Care Team Engagement: Applying the 4R Model at a Patient's Breast Cancer Care Initiation.

PubMed

Weldon, Christine B; Friedewald, Sarah M; Kulkarni, Swati A; Simon, Melissa A; Carlos, Ruth C; Strauss, Jonathan B; Bunce, Mikele M; Small, Art; Trosman, Julia R

2016-12-01

Radiologists aspire to improve patient experience and engagement, as part of the Triple Aim of health reform. Patient engagement requires active partnerships among health providers and patients, and rigorous teamwork provides a mechanism for this. Patient and care team engagement are crucial at the time of cancer diagnosis and care initiation but are complicated by the necessity to orchestrate many interdependent consultations and care events in a short time. Radiology often serves as the patient entry point into the cancer care system, especially for breast cancer. It is uniquely positioned to play the value-adding role of facilitating patient and team engagement during cancer care initiation. The 4R approach (Right Information and Right Care to the Right Patient at the Right Time), previously proposed for optimizing teamwork and care delivery during cancer treatment, could be applied at the time of diagnosis. The 4R approach considers care for every patient with cancer as a project, using project management to plan and manage care interdependencies, assign clear responsibilities, and designate a quarterback function. The authors propose that radiology assume the quarterback function during breast cancer care initiation, developing the care initiation sequence, as a project care plan for newly diagnosed patients, and engaging patients and their care teams in timely, coordinated activities. After initial consultations and treatment plan development, the quarterback function is transitioned to surgery or medical oncology. This model provides radiologists with opportunities to offer value-added services and solidifies radiology's relevance in the evolving health care environment. To implement 4R at cancer care initiation, it will be necessary to change the radiology practice model to incorporate patient interaction and teamwork, develop 4R content and local adaption approaches, and enrich radiology training with relevant clinical knowledge, patient interaction

Experiences of cancer caregiving in socioeconomically deprived areas of Attica, Greece.

PubMed

Germeni, Evi; Sarris, Markos

2015-07-01

The shift of the majority of cancer care from inpatient to outpatient settings has given rise to a number of issues that have not yet been adequately addressed. This is especially true in countries undergoing rapid and profound socioeconomic changes that have substantially affected the health care sector. We conducted 12 in-depth interviews with family cancer caregivers residing in socioeconomically deprived areas of Attica, Greece. Using an inductive thematic approach, we identified three major themes: (a) the truth within boundaries, focusing on the flow of information in the triad doctor-caregiver-patient; (b) the evil called "cancer," reflecting caregivers' perceptions of the illness; and (c) being left "high and dry," reflecting participant experiences of home-based care. Against a background of financial crisis, this study underlines the need for safeguarding the rights of chronically ill patients and ensuring that informal cancer care, apart from a cost-effective solution, will also be an efficient one. © The Author(s) 2014.

Cancer pain, fatigue, distress, and insomnia in cancer patients.

PubMed

Theobald, Dale E

2004-01-01

Insomnia is common among cancer patients, occurring in approximately 30% to 50% of the cancer population. The interactions between cancer pain, insomnia, fatigue, and depression/anxiety are complex, warranting treatment plans that focus not only on the relief of specific symptoms to improve quality of life but also on the impact of treatment on other related symptoms. Pain is one of the most common symptoms experienced by cancer patients and is one of the primary factors that precipitate insomnia in this population. Fatigue is also commonly reported by cancer patients, with a prevalence of nearly 80% in some tumor types. Cancer-related fatigue occurs most often after surgery, chemotherapy, radiotherapy, or immunotherapy and has been reported by cancer patients to be the major obstacle to normal functioning and a good quality of life. Insomnia in cancer patients often occurs in association with psychological disorders such as depression or anxiety. Sleep disturbances are associated with aberrant patterns of cortisol secretion, such as those found in insomnia, which are known to significantly depress the immune system, particularly the cells of the immune system responsible for mounting a defense against tumors. Evidence suggests that management of insomnia through a combination of pharmacologic and nonpharmacologic means can have a positive impact not only on insomnia but also on related symptoms and, consequently, on overall health and quality of life. Although the treatment of insomnia in cancer patients can improve cancer-related fatigue, immune functioning, and overall quality of life, insomnia in the context of cancer is still undertreated. Physicians should use hypnotic agents appropriately and be aware of the reduced potential for producing tolerance and dependence with the nonbenzodiazepine hypnotic agents. The management of insomnia in cancer patients should include a global treatment plan designed to address not only the underlying sleep disturbance but

Exercise Training and Cardiovascular Health in Cancer Patients.

PubMed

Squires, Ray W; Shultz, Adam M; Herrmann, Joerg

2018-03-10

Cancer patients nearly universally experience a decline in quality of life, with fatigue and reduced exercise tolerance as cardinal reflections. A routine exercise program can improve these signs and symptoms as well as overall outcomes. The review provides an updated overview of the field and its translation to clinical practice. A wealth of clinical studies have documented the safety and benefits of exercise after and during cancer therapy, and pilot and larger-scale studies are currently ongoing to integrate exercise into the treatment program for cancer patients undergoing active therapy (EXACT pilot, OptiTrain, and TITAN study). More recently, efforts have emerged to commence exercise programs before the start of cancer therapy, so-called pre-habilitation. The concept of increasing the cardiovascular reserve beforehand is intuitively attractive. In agreement, preclinical studies support exercise as an effective preventive means before and during cardiotoxic drug exposure. Assuming that a pronounced drop in exercise tolerance will occur during cancer therapy, pre-habilitation can potentially curtail or raise the nadir level of exercise tolerance. Furthermore, such efforts might serve as pre-conditioning efforts in reducing not only the nadir, but even the magnitude of drop in cardiovascular reserve. Initiated beforehand, cancer patients are also more likely to continue these efforts during cancer therapy. Finally, an active exercise routine (≥ 150 min/week moderate intensity or ≥ 75 min/week vigorous intensity or combination) in conjunction with the other six American Heart Association's cardiovascular health metrics (BMI < 25 kg/m 2 , blood pressure < 120/80 mmHg, fasting plasma glucose < 100 mg/dL, total cholesterol < 200 mg/dL, 4-5 component healthy diet, no smoking) reduces not only the cardiovascular but also the cancer disease risk. Exercise can reduce the risks of developing cancer, the detrimental effects of its treatment on the

Shared decision-making - Rhetoric and reality: Women's experiences and perceptions of adjuvant treatment decision-making for breast cancer.

PubMed

Mahmoodi, Neda; Sargeant, Sally

2017-01-01

This interview-based study uses phenomenology as a theoretical framework and thematic analysis to challenge existing explanatory frameworks of shared decision-making, in an exploration of women's experiences and perceptions of shared decision-making for adjuvant treatment in breast cancer. Three themes emerged are as follows: (1) women's desire to participate in shared decision-making, (2) the degree to which shared decision-making is perceived to be shared and (3) to what extent are women empowered within shared decision-making. Studying breast cancer patients' subjective experiences of adjuvant treatment decision-making provides a broader perspective on patient participatory role preferences and doctor-patient power dynamics within shared decision-making for breast cancer.