The Finding My Way UK Clinical Trial: Adaptation Report and Protocol for a Replication Randomized Controlled Efficacy Trial of a Web-Based Psychological Program to Support Cancer Survivors.

BACKGROUND: Cancer survivors frequently report a range of unmet psychological and supportive care needs; these often continue after treatment has finished and are predictive of psychological distress and poor health-related quality of life. Web-based interventions demonstrate good efficacy in addressing these concerns and are more accessible than face-to-face interventions. Finding My Way (FMW) is a web-based, psycho-educational, and cognitive behavioral therapy intervention for cancer survivors developed in Australia. Previous trials have demonstrated that FMW is acceptable, highly adhered to, and effective in reducing the impact of distress on quality of life while leading to cost savings through health resource use reduction. OBJECTIVE: This study aims to adapt the Australian FMW website for a UK cancer care context and then undertake a single-blinded, randomized controlled trial of FMW UK against a treatment-as-usual waitlist control. METHODS: To an extent, our trial design replicates the existing Australian randomized controlled trial of FMW. Following a comprehensive adaptation of the web resource, we will recruit 294 participants (147 per study arm) from across clinical sites in North West England and North Wales. Participants will have been diagnosed with cancer of any type in the last 6 months, have received anticancer treatment with curative intent, be aged ≥16 years, be proficient in English, and have access to the internet and an active email address. Participants will be identified and recruited through the National Institute for Health Research clinical research network. Measures of distress, quality of life, and health economic outcomes will be collected using a self-report web-based questionnaire at baseline, midtreatment, posttreatment, and both 3- and 6-month follow-up. Quantitative data will be analyzed using intention-to-treat mixed model repeated measures analysis. Embedded semistructured qualitative interviews will probe engagement with, and experiences of using, FMW UK and suggestions for future improvements. RESULTS: The website adaptation work was completed in January 2021. A panel of cancer survivors and health care professionals provided feedback on the test version of FMW UK. Feedback was positive overall, although minor updates were made to website navigation, inclusivity, terminology, and the wording of the Improving Communication and Sexuality and Intimacy content. Recruitment for the clinical trial commenced in April 2021. We aim to report on findings from mid-2023. CONCLUSIONS: Replication studies are an important aspect of the scientific process, particularly in psychological and clinical trial literature, especially in different geographical settings. Before replicating the FMW trial in the UK setting, content updating was required. If FMW UK now replicates Australian findings, we will have identified a novel and cost-effective method of psychosocial care delivery for cancer survivors in the United Kingdom. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN) 14317248; https://www.isrctn.com/ISRCTN14317248. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/31976.

Diet and nutrition in patients who have received pelvic radiotherapy: A mixed-methods study to explore dietary habits, nutritional awareness, and experiences of nutritional care.

OBJECTIVES: Individuals who have survived cancer may benefit from dietary modifications to improve quality of life and future health outcomes. The aim of this study was to explore dietary habits and experiences of nutritional support in patients with a cancer diagnosis who have received radiotherapy to the pelvic area. METHODS: A mixed-methods approach was used. Individuals diagnosed with a pelvic cancer (anal, bladder, rectal, and cancers of the reproductive organs), either undergoing or having completed pelvic radiotherapy 6 to 24 mo previously, were invited to participate in a postal survey. A purposive subsample was also invited to take part in telephone interviews. Thematic analysis of interview data was undertaken and integrated with data from quantitative analysis. RESULTS: The survey was completed by 254 (38%) respondents. Two-thirds of respondents (170) reported dietary changes since diagnosis; most notable changes were reduction of sugary foods (48%) and alcohol (41%). Receipt of support from the health care team was significantly associated with dietary change (odds ratio, 3.26; 95% confidence interval, 1.58-6.75); however, only 43% (108) had received dietary support from the health care team. Of the respondents, 68% (171) said they would like to receive additional dietary support. The effect of the condition on diet was highlighted in the theme "Impact of diagnosis and treatments on dietary choices." Self-management of disease was influenced by personal resources, social resources, comorbidities and disabilities, influence of work, regaining normality, and barriers to dietary changes. CONCLUSION: Lack of routine provision of nutritional care to patients after a cancer diagnosis and patient interest in this area highlighted unmet needs in managing diet-related problems and leading a healthy future lifestyle.

Using the Framework Method for the Analysis of Qualitative Dyadic Data in Health Research.

There are an increasing number of qualitative studies which focus on the dyad (couples, families, caregivers-patients, health care professionals-patients). However, there is limited literature regarding qualitative methodology for dyadic analysis when members of the couple have been interviewed separately. The aim of this article is to share the knowledge we gained from undertaking a novel approach to dyadic analysis. We used an adapted version of the Framework method on data gathered in a study exploring the impact of prostate cancer on younger men and their partners. In this article, we examine and reflect on the challenges of this type of analysis and describe how we analyzed the interview data from a dyadic point of view, to share what we learned in the process.

The experiences and needs of couples affected by prostate cancer aged 65 and under: a qualitative study.

PURPOSE: Prostate Cancer (PCa) is often considered to be an illness affecting older men, however the prevalence in younger men (<=65 years) is rising. Diagnosis and treatment for PCa can have a significant impact on the lives of both the man with PCa and his partner. This study explored the experiences and needs of younger men and their partners affected by PCa. The findings will be used to inform service provision and develop interventions appropriate to need. METHODS: Participants were recruited from respondents to a national PROMS study (Life After Prostate Cancer Diagnosis (LAPCD), who indicated on completed questionnaires their willingness to be interviewed. Semi-structured telephone interviews were conducted with twenty-eight couples, separately (56 participants). Data were analysed using the Framework Method. RESULTS: Following the diagnosis of PCa, couples' experienced changes in their intimate relationships, parental/familial roles, work and finances, and social connections and activities. Couples adopted a range of strategies and behaviours to help their adjustment to PCa, such as communicating with each other, distancing, distraction, and adopting a positive mindset towards PCa. This, in turn, influenced how their identity as a couple evolved. CONCLUSIONS: Following a diagnosis of PCa, the identity of couples are continually evolving. It is important that these couples are provided with the appropriate information, support and resources to help them transition along the cancer pathway. IMPLICATIONS FOR CANCER SURVIVORS: Key areas of support identified for younger couples include: 1) couple focused support programme to foster relationship strategies/behaviours that facilitate couple adjustment; 2) age-specific support, e.g. 'buddying systems' connecting younger couples affected by PCa and providing them with tailored information (written/online/app).

Diet and nutrition information and support needs in pelvic radiotherapy: A systematic, mixed-methods review.

INTRODUCTION: This study aimed to review diet and nutrition information and support needs of cancer patients who receive pelvic radiotherapy to inform the development of interventions to improve this area of care. METHODS: The systematic review followed the PRISMA guidelines. Six electronic databases were searched for peer-reviewed studies of any design that assessed diet and nutrition needs after a pelvic cancer diagnosis. Narrative synthesis was used to integrate findings. RESULTS: Thirty studies (12 quantitative, 15 qualitative, 3 mixed-methods) were included. Four themes, "content of dietary information"; "sources of information"; "sustaining dietary change"; and "views on the role of diet post-treatment," summarised evidence about provision of nutritional guidance following diagnosis, but also contrasting views about the role of diet post-diagnosis. Qualitative studies contributed considerably more to the synthesis, compared to quantitative studies. Included studies were of moderate to good quality; selection bias in quantitative studies and poor evidence of credibility and dependability in qualitative studies were highlighted. CONCLUSION: There is some evidence of lack of nutrition support in pelvic cancer survivors, but methodological limitations of included studies may have had an impact on the findings. Future, prospective studies that focus on diet and nutrition needs post-diagnosis are warranted to improve care.

Decision regret in men living with and beyond nonmetastatic prostate cancer in the United Kingdom: A population-based patient-reported outcome study.

OBJECTIVE: Clinical options for managing nonmetastatic prostate cancer (PCa) vary. Each option has side effects associated with it, leading to difficulty in decision-making. This study aimed to assess the relationship between patient involvement in treatment decision-making and subsequent decision regret (DR), and quantify the impact of health-related quality of life (HRQL) outcomes on DR. METHODS: Men living in the United Kingdom, 18 to 42 months after diagnosis of PCa, were identified from cancer registration data and sent a questionnaire. Measures included the Decision Regret Scale (DRS), Expanded Prostate cancer Index Composite short form (EPIC-26), EQ-5D-5L, and an item on involvement in treatment decision-making. Multivariable ordinal regression was utilized, with DR categorized as none, mild, or moderate/severe regret. RESULTS: A total of 17 193 men with stage I-III PCa completed the DRS: 36.6% reported no regret, 43.3% mild regret, and 20.0% moderate/severe regret. The odds of reporting DR were greater if men indicated their views were not taken into account odds ratio ([OR] = 6.42, 95% CI: 5.39-7.64) or were involved "to some extent" in decision-making (OR = 4.63, 95% CI: 4.27-5.02), compared with men who were "definitely" involved. After adjustment, including for involvement, men reporting moderate/big problems with urinary, bowel, or sexual function were more likely to experience regret compared with men with no/small problems. Better HRQL scores were associated with lower levels of DR. CONCLUSIONS: This large-scale study demonstrates the benefit of patient involvement in treatment decision-making for nonmetastatic PCa. However, men experiencing side effects and poorer HRQL report greater DR. Promoting engagement in clinical decision-making represents good practice and may reduce the risk of subsequent regret.

Experiences and supportive care needs of UK patients with pancreatic cancer: a cross-sectional questionnaire survey.

OBJECTIVES: Patients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer. This survey aimed to describe their experiences of care and supportive care needs to inform future service provision. DESIGN: Cross-sectional questionnaire survey of patients with pancreatic cancer in the UK. SETTING: Individuals at any stage along the care pathway were recruited via five National Health Service sites in the UK, and online, from January to June 2018. PARTICIPANTS: 274 individuals completed the questionnaire (78% (215) were completed online). Approximately half of participants were diagnosed within the last year (133/274). Of 212 providing gender details, 82 were male and 130 were female. Ninety per cent (192/213) described themselves as White British. PRIMARY OUTCOME MEASURES: Experiences of communication and information; involvement in treatment decisions; supportive care needs. RESULTS: Communication with, and care received from, clinical staff were generally reported positively. However, 29% (75/260) of respondents did not receive enough information at diagnosis, and 10% (25/253) felt they were not involved in decisions about their treatment, but would have liked to be. Supportive care needs were greatest in psychological and physical/daily living domains. 49% (108/221) of respondents reported one or more moderate/high unmet needs within the last month, of which the most commonly reported were: dealing with uncertainty about the future; fears about the cancer spreading; not being able to do things they used to; concerns about those close to them; lack of energy; anxiety; feelings of sadness and feeling down/depressed. Experiences were poorer, and unmet supportive care needs greater, in patients with unresectable disease. CONCLUSIONS: Patients with pancreatic cancer have unmet information and support needs across the cancer trajectory. Psychological and physical support appears to be the biggest gap in care. Needs should be assessed and supportive care interventions implemented from the point of diagnosis, and monitored regularly to help patients live as good a quality of life as possible.

Availability and quality assessment of online nutrition information materials for pelvic cancer patients in the UK.

OBJECTIVE: Written information can be an essential source of support in the promotion of lifestyle changes after a cancer diagnosis. This study aimed to identify and assess the quality of available online patient information materials (PIMs) in relation to diet and nutrition for patients with pelvic cancer. METHODS: The online sources of the National Health Service, cancer centres and charitable organisations throughout the UK were searched. Content was assessed using an evidence-based checklist, and readability with two validated formulas. Consumer feedback was sought through patient and public involvement (PPI) groups. RESULTS: Forty PIMs were identified; four were designed specifically for pelvic cancers (bladder, bowel, prostate) and 36 were generic (relevant for all cancers). Most PIMs had a good content score, with PIMs from charities scoring higher overall than PIMs from cancer centres [32 (4) vs. 23 (11), p < 0.001]. Seventy-three percent of PIMs had a readability score within acceptable levels (6th-8th grade; reading ability of 11-14 year-olds). PPI contributors found most PIMs useful and comprehensive but lacking specific information needed to meet individual needs. CONCLUSION: There is limited availability of online PIMs for cancer survivors and even fewer tailored to pelvic cancers. Most materials have comprehensive content and acceptable readability. Some PIMs may require improvement.

The challenges on the family unit faced by younger couples affected by prostate cancer: A qualitative study.

OBJECTIVE: The number of younger men being diagnosed with prostate cancer (PCa; aged ≤65) is increasing. It is recognised that PCa and treatment side effects can have a significant impact on quality of life. This study explores the challenges faced by younger couples affected by PCa with dependent children (under 18 years) or young adults (18-29 years) in their families. METHODS: Twenty-three men with PCa and their partners were interviewed (separately) by telephone. Participants were recruited from respondents to the life after prostate cancer diagnosis (LAPCD) national survey. Men were 3 to 5 years postdiagnosis, and following a range of treatment pathways. Data were analysed using the Framework Approach. RESULTS: Younger couples affected by PCa felt challenged by issues relating to their parental role and the dynamics within the family. Five main themes emerged: difficult conversations about PCa diagnosis; parental perceptions of the impact of diagnosis on children; parental responses to the impact of PCa on the family; shielding, coping, and normalising strategies; and levels of support. CONCLUSIONS: A diagnosis of PCa can cause significant disruption to the family unit and the quality of life of its members. Support programmes offering guidance to children/young adults affected by PCa in their family, and addressing the concerns of parents may help families to better adapt. Encouraging clinical professionals to initiate conversations with younger couples about their children may be a way forward in directing appropriate support. Further research is needed to elucidate appropriate, effective supportive interventions.

Adjuvant endocrine therapy after breast cancer: a qualitative study of factors associated with adherence.

INTRODUCTION: Despite evidence of the efficacy of adjuvant endocrine therapy (AET) in reducing the risk of recurrence and mortality after treatment for primary breast cancer, adherence to AET is suboptimal. This study aimed to explore factors that influence adherence and nonadherence to AET following breast cancer to inform the development of supportive interventions. METHODS: Interviews were conducted with 32 women who had been prescribed AET, 2-4 years following their diagnosis of breast cancer. Both adherers (n=19) and nonadherers (n=13) were recruited. The analysis was conducted using the Framework approach. RESULTS: Factors associated with adherence were as follows: managing side effects including information and advice on side effects and taking control of side effects, supportive relationships, and personal influences. Factors associated with nonadherence were as follows: burden of side effects, feeling unsupported, concerns about long-term AET use, regaining normality, including valuing the quality of life over length of life, and risk perception. CONCLUSION: Provision of timely information to prepare women for the potential side effects of AET and education on medication management strategies are needed, including provision of timely and accurate information on the efficacy of AET in reducing breast cancer recurrence and on potential side effects and ways to manage these should they arise. Trust in the doctor-patient relationship and clear patient pathways for bothersome side effects and concerns with AET are important. Training and education on AET for GPs should be considered alongside novel care pathways such as primary care nurse cancer care review and community pharmacist follow-up.

Supporting prostate cancer survivors in primary care: Findings from a pilot trial of a nurse-led psycho-educational intervention (PROSPECTIV).

PURPOSE: This study sought to test the acceptability and feasibility of a nurse-led psycho-educational intervention (NLPI) delivered in primary care to prostate cancer survivors, and to provide preliminary estimates of the effectiveness of the intervention. METHODS: Men who reported an ongoing problem with urinary, bowel, sexual or hormone-related functioning/vitality on a self-completion questionnaire were invited to participate. Participants were randomly assigned to the NLPI plus usual care, or to usual care alone. Recruitment and retention rates were assessed. Prostate-related quality of life, self-efficacy, unmet needs, and psychological morbidity were measured at baseline and 9 months. Health-care resource use data was also collected. An integrated qualitative study assessed experiences of the intervention. RESULTS: 61% eligible men (83/136) participated in the trial, with an 87% (72/83) completion rate. Interviews indicated that the intervention filled an important gap in care following treatment completion, helping men to self-manage, and improving their sense of well-being. However, only a small reduction in unmet needs and small improvement in self-efficacy was observed, and no difference in prostate-related quality of life or psychological morbidity. Patients receiving the NLPI recorded more primary care visits, while the usual care group recorded more secondary care visits. Most men (70%; (21/30)) felt the optimal time for the intervention was around the time of diagnosis/before the end of treatment. CONCLUSIONS: Findings suggest a nurse-led psycho-educational intervention in primary care is feasible, acceptable and potentially useful to prostate cancer survivors.

Partners and close family members of long-term cancer survivors: health status, psychosocial well-being and unmet supportive care needs.

BACKGROUND: A cancer diagnosis can have a profound impact on partners and close family members of patients. Little is currently known about the long-term impact. OBJECTIVES: The objective of this study is to describe health status, levels of anxiety and depression, unmet supportive care needs and positive outcomes in the partners/family members of breast, prostate and colorectal cancer survivors 5-16 years post-diagnosis. METHODS: Patients in a linked study were asked to invite a partner or other close family member to complete a self-administered postal questionnaire. Data were analysed by cancer site and time since diagnosis. Matched comparisons were made between cancer patients in the linked study and their partners. RESULTS: An expression of interest was received from 330 partners/family members, and 257 questionnaires (77.9%) were returned. Health status and levels of anxiety and depression were comparable with population norms. Respondents reported an average of 2.7 unmet needs from 34 possible options. Hospital parking, information about familial risk, help managing fear of recurrence and coordination of care were the most cited unmet needs. There was little variation in health status, psychological morbidity and unmet needs by cancer site or time since diagnosis. Concordance between patients and partners was low for anxiety but higher with respect to positive outcomes and some unmet needs. CONCLUSIONS: Most partners/family members of long-term cancer survivors report few ongoing issues. However, a small proportion (<10%) have high levels of anxiety and/or moderate or strong unmet needs. Strategies for identifying this group and addressing their needs are required, while allowing the majority to resume normal life.

Psychological outcomes of familial ovarian cancer screening: no evidence of long-term harm.

OBJECTIVES: Ovarian cancer screening for women at increased genetic risk in the UK involves 4-monthly CA125 tests and annual ultrasound, with further tests prompted by an abnormal result. The study evaluated the longer-term psychological and behavioural effects of frequent ovarian screening. METHODS: Women completed T1 questionnaires before their first routine 4-monthly CA125 test, and T2 follow-up questionnaires one week after their result. Women with abnormal results completed a further questionnaire one week after return to routine screening (T3 primary end-point). T4 questionnaires were sent at nine months. Measures included cancer distress, general anxiety/depression, reassurance, and withdrawal from screening. RESULTS: A total 1999 (62%) of 3224 women completed T1 questionnaires. T2 questionnaires were completed by 1384/1609 participants (86%): 1217 (89%) with normal results and 167/242 (69%) with abnormal results. T3 questionnaires were completed by 141/163 (87%) women, with 912/1173 (78%) completing T4 questionnaires. Analysis of covariance indicated that, compared to women with normal results, women with abnormal results reported moderate cancer distress (F = 27.47, p ≤ .001, η(2) = 0.02) one week after their abnormal result and were significantly more likely to withdraw from screening (OR = 4.38, p ≤ .001). These effects were not apparent at T3 or T4. The effect of screening result on general anxiety/depression or overall reassurance was not significant. CONCLUSIONS: Women participating in frequent ovarian screening who are recalled for an abnormal result may experience transient cancer-specific distress, which may prompt reconsideration of risk management options. Health professionals and policy makers may be reassured that frequent familial ovarian screening does not cause sustained psychological harm.

A qualitative study exploring the experience of the partners of cancer survivors and their views on the role of primary care.

PURPOSE: The partners of cancer survivors may experience distress, anxiety, fear and uncertainty whilst also caring for and supporting a partner who is ill. As they concentrate on the cancer survivor's needs, their own needs may remain unaddressed. Primary care staff may be well placed to support partners as they are generally accessible and may have a better knowledge of the patient's background and family relationships. However, their current involvement in the cancer survivor's and partner's cancer-related care is unclear. This study aimed to describe the experience of the partners of cancer survivors in dealing with cancer-related issues in the first 3 years post-diagnosis, their use of primary care services in relation to these issues and the barriers in doing so and their views on the role that primary care could potentially play in supporting them as carers during this period. METHODS: Semi-structured interviews with 22 partners of cancer survivors diagnosed within the last 3 years and recruited through six GP practices in the Thames Valley Region of the UK were analysed using the 'framework' approach to thematic analysis. RESULTS: Three issues were identified as of particular concern to partners: providing practical support, providing emotional support and managing their own health and well-being. Few partners had sought or received support from primary care specifically for cancer-related issues, indicating confidentiality, lack of knowledge of family relationships and the greater need of the cancer survivor as barriers. Most partners would welcome a proactive approach from primary care and felt that this would provide an opportunity to discuss issues they were concerned about. CONCLUSIONS: Needs and concerns of the partners of cancer survivors in caring for patients are often not addressed. There is a scope for primary care to elicit these needs and provide greater support. Changes to clinical practice in primary care could lead to greater involvement of and to better outcomes for cancer survivors and their partners. A proactive approach to patients and their partners or other close family members at the time of diagnosis through an offer of support and the inclusion in a designated review appointment at the end of initial treatment would be useful.

Withdrawal from familial ovarian cancer screening for surgery: findings from a psychological evaluation study (PsyFOCS).

OBJECTIVE: A prospective psychological evaluation study of familial ovarian cancer screening (PsyFOCS) is underway in partnership with the UK Familial Ovarian Cancer Screening Study (UK FOCSS Phase 2). One of the aims of PsyFOCS is to examine factors associated with withdrawal from the UK FOCSS prior to the onset of 4-monthly screening. METHOD: 1999 of 3224 women completed a baseline questionnaire. 110 (5.5%) women withdrew from screening prior to their first routine Phase 2 screen, of which 73 (66.4% of withdrawals) had withdrawn because they had undergone removal of their ovaries and fallopian tubes (withdrawn group). The comparison group consisted of 1868 women who remained on screening. The baseline questionnaire included measures of cancer-specific distress, anxiety, depression and illness perceptions. RESULTS: Logistic regression analysis indicated that having had prior annual (Phase 1) screening (OR=13.34, p<.01), past experience of further tests (OR=2.37, p<.01) and greater cancer-specific distress (OR=1.38, p<.01) were associated with withdrawal for surgery. Belief in ageing as a cause of ovarian cancer was also associated with withdrawal (OR=1.32, p=.05). CONCLUSION: These cross-sectional data suggest that withdrawal from familial ovarian cancer screening may be influenced by both clinical and psychological factors. These may reflect women's experience of the drawbacks of screening and increased concern about ovarian cancer risk, as well as having opportunities to consider surgery as an alternative risk management strategy whilst using screening as an interim measure.

Views of health professionals on the role of primary care in the follow-up of men with prostate cancer.

BACKGROUND: Follow-up care for prostate cancer has traditionally been led by secondary care in hospital out-patient clinics. As the number of men with prostate cancer increases and secondary care resources face pressure, alternative follow-up models are being sought. Current National Institute for Health and Clinical Excellence guidance recommends follow-up outside the hospital setting for patients who are stable 2 years following radical treatment and for those undergoing 'watchful waiting'. OBJECTIVE: To describe current practice in a sample of relevant health care professionals and to seek their views on the role of primary care in prostate cancer follow-up. METHODS: Semi-structured telephone interviews with 38 UK health care professionals, from both secondary and primary care. Transcripts were analysed using the constant comparative method. RESULTS: There are marked variations in current follow-up practice around the country, with hospital-based follow-up ranging from 6 months to lifetime. The predominant, although not universal, view expressed was that there is both scope and support for primary care to play a greater role, particularly for men with stable disease. This was qualified by the need for supporting education, including guidance on interpretation of prostate-specific antigen values, introduction of robust follow-up systems in primary care, easy access back into secondary (hospital) care, a mechanism for ensuring follow-up data can still be collected for audit purposes and appropriate resourcing. CONCLUSIONS: If primary care is to play a significant role in providing high-quality follow-up care for men with prostate cancer, then steps need to be taken to address the barriers to increased primary care involvement identified by this study.

Primary health and supportive care needs of long-term cancer survivors: a questionnaire survey.

PURPOSE: There are 1.2 million long-term cancer survivors in the United Kingdom. Existing research on the health and supportive care needs of these survivors is sparse and inconclusive. This study investigated health status, psychological morbidity, and supportive care needs in long-term cancer survivors in the United Kingdom. METHODS: Five to 16 years after diagnosis, 1,275 eligible survivors of breast, colorectal, and prostate cancers were approached to participate in a questionnaire survey. The questionnaire explored health status (European Quality of Life-5 Dimensions), psychological morbidity (Hospital Anxiety and Depression Scale), and supportive care needs (Cancer Survivors' Unmet Needs Measure). Data were analyzed by type of cancer and time since diagnosis. Logistic regression was used to identify predictors of unmet supportive care needs. RESULTS: The response rate was 51.7% (659 survivors). Overall health status and levels of psychological morbidity were consistent with population norms. At least one unmet supportive care need was reported by 47.4% of survivors, but overall numbers of unmet needs were low (mean, 2.8; standard deviation, 4.8). The most frequently endorsed unmet need was for help to manage concerns about cancer recurrence. Trait anxiety (P < .001), nondischarged status (P < .01), dissatisfaction with discharge (P < .01), and receipt of hormonal therapy (P < .01) were predictive of unmet supportive care needs. CONCLUSION: The findings suggest a majority of long-term breast, colorectal, and prostate cancer survivors who have no signs of recurrence report good health and do not have psychological morbidity or large numbers of unmet supportive care needs. A minority of long-term survivors may benefit from ongoing support. The identification and support of those long-term survivors with ongoing needs is a key challenge for health care professionals.

Experiences of follow-up after treatment in patients with prostate cancer: a qualitative study.

OBJECTIVE: To develop an understanding of experiences of follow-up in patients with prostate cancer, to seek explanations as to why men's needs might not be well met, and explore views on the possible role of primary care in follow-up. The experiences of these patients, and views on the delivery of follow-up care, have been relatively neglected compared to those diagnosed with other cancers. PATIENTS AND METHODS: In all, 35 patients were recruited from 20 practices across three regions in the UK. Maximum variation was sought by purposely sampling by age (59-82 years), treatment, length (0.75-14 years) and mode of follow-up. RESULTS: Patients' descriptions of the content and organization of follow-up showed the shortcomings of follow-up, which included system failings causing patients to be lost to follow-up, and unmet psychosexual needs. Patients were mainly positive about the prospect of follow-up taking place outside the hospital setting. However, some expressed concerns about current follow-up practices and suggested several improvements that need considering if primary care were to take a greater role. CONCLUSION: This study identified some general deficiencies with the current system of follow-up, and our data indicate that primary care could have a role in addressing some of these.