Unmet supportive care needs of breast, colorectal and testicular cancer survivors in the first 8 months post primary treatment: A prospective longitudinal survey.

OBJECTIVES: To explore the supportive care needs of cancer survivors, the characteristics of patients with high levels of unmet need, changes in unmet need after treatment ends and differences in unmet needs of breast, colorectal and testicular survivors. METHODS: The method used was a prospective longitudinal mailed survey. Unmet needs, measured by 25-item modified Cancer Survivors Unmet Needs survey at baseline (immediately post-treatment) and 8 months later, were analysed descriptively. RESULTS: Of 434 breast, 186 colorectal and 75 testicular patients responding at baseline, 56.2%, 65.6% and 50.7%, respectively, had no unmet needs, the top decile having ≥10 (breast) or seven (colorectal and testicular) different needs and seven different unmet needs. The most frequently reported unmet need (all groups) was fear of cancer recurrence. Unmet needs fell significantly at 8 months for breast patients. Some patients reported new needs. Needs were lowest amongst colorectal survivors and differed between the three groups. Higher levels of unmet needs (breast and colorectal) were associated with having had chemotherapy. CONCLUSION: Most survivors reported few unmet needs, but a small proportion have persisting or emerging needs. Routine or regular monitoring of unmet needs is required so that healthcare professionals can deliver personalised care based on individual needs, preferences and circumstances.

A web-based intervention (RESTORE) to support self-management of cancer-related fatigue following primary cancer treatment: a multi-centre proof of concept randomised controlled trial.

PURPOSE: Cancer-related fatigue (CRF) is a frequent and distressing symptom experienced after cancer treatment. RESTORE is the first web-based resource designed to enhance self-efficacy to manage CRF following curative-intent treatment. The aim of this study is to test the proof of concept and inform the design of an effectiveness trial. METHODS: A multi-centre parallel-group two-armed (1:1) exploratory randomised controlled trial (RCT) with qualitative process evaluation was employed in the study. Participants (≥18 years; ≤5 years post treatment with moderate to severe fatigue) were recruited and randomly assigned to RESTORE or a leaflet. Feasibility and acceptability were measured by recruitment, attrition, intervention adherence, completion of outcome measures and process evaluation. Change in self-efficacy to manage CRF was also explored. Outcome measures were completed at baseline (T0), 6 weeks (T1) and 12 weeks (T2). Data were analysed using mixed-effects linear regression and directed content analysis. RESULTS: One hundred and sixty-three people participated in the trial and 19 in the process evaluation. The intervention was feasible (39 % of eligible patients consented) and acceptable (attrition rate 36 %). There was evidence of higher fatigue self-efficacy at T1 in the intervention group vs comparator (mean difference 0.51 [-0.08 to 1.11]), though the difference in groups decreased by 12 weeks. Time since diagnosis influenced perceived usefulness of the intervention. Modifications were suggested. CONCLUSION: Proof of concept was achieved. The RESTORE intervention should be subject to a definitive trial with some adjustments. Provision of an effective supportive resource would empower cancer survivors to manage CRF after treatment completion. TRIAL REGISTRATION: ISRCTN67521059.

Hope is key to recovery.

With increasing numbers of people surviving cancer, there is a need to focus on how they can be supported once they have completed treatment.

Pre-Surgery Depression and Confidence to Manage Problems Predict Recovery Trajectories of Health and Wellbeing in the First Two Years following Colorectal Cancer: Results from the CREW Cohort Study.

PURPOSE: This paper identifies predictors of recovery trajectories of quality of life (QoL), health status and personal wellbeing in the two years following colorectal cancer surgery. METHODS: 872 adults receiving curative intent surgery during November 2010 to March 2012. Questionnaires at baseline, 3, 9, 15, 24 months post-surgery assessed QoL, health status, wellbeing, confidence to manage illness-related problems (self-efficacy), social support, co-morbidities, socio-demographic, clinical and treatment characteristics. Group-based trajectory analyses identified distinct trajectories and predictors for QoL, health status and wellbeing. RESULTS: Four recovery trajectories were identified for each outcome. Groups 1 and 2 fared consistently well (scores above/within normal range); 70.5% of participants for QoL, 33.3% health status, 77.6% wellbeing. Group 3 had some problems (24.2% QoL, 59.3% health, 18.2% wellbeing); Group 4 fared consistently poorly (5.3% QoL, 7.4% health, 4.2% wellbeing). Higher pre-surgery depression and lower self-efficacy were significantly associated with poorer trajectories for all three outcomes after adjusting for other important predictors including disease characteristics, stoma, anxiety and social support. CONCLUSIONS: Psychosocial factors including self-efficacy and depression before surgery predict recovery trajectories in QoL, health status and wellbeing following colorectal cancer treatment independent of treatment or disease characteristics. This has significant implications for colorectal cancer management as appropriate support may be improved by early intervention resulting in more positive recovery experiences.

Web-based self-management for young cancer survivors: consideration of user requirements and barriers to implementation.

PURPOSE: As the population of young cancer survivors increases, there is a need to develop alternative ways of providing post-treatment support. Online systems potentially offer self-management and e-learning support following cancer treatment. This research aims to explore the self-management support needs of teenage and young adult cancer survivors and consider whether those needs can be met through a web-based self-management resource. METHODS: A mixed methods approach was adopted including an online survey (n = 24), focus groups and interviews with teenage and young adult cancer survivors (n = 7) and interviews with parents of survivors (n = 6), information technology specialists (n = 8) and clinical, nursing and social work professionals (n = 11). RESULTS: All stakeholders were supportive of web-based self-management to meet information and support needs that would supplement continued direct interaction with clinical staff. Barriers to implementation were identified in terms of risks to young people, governance issues and the challenges of providing a long-term service. CONCLUSION: Computer access and use amongst teenagers and young adults is commonplace, and there is an expectation that self-management needs will be met at least partially online in the future. There is a desire for online social support through peer interaction as well personal developmental and clinical management. These elements may need to be run through different systems to cater for governance requirements. IMPLICATIONS FOR CANCER SURVIVORS: An online self-management system could provide support at a number of different levels. The barriers to implementation should be addressed, to ensure that survivors can be supported in this way in the future.

Development and qualitative evaluation of a self-management workshop for testicular cancer survivor-initiated follow-up.

PURPOSE/OBJECTIVES: To describe the needs of testicular cancer survivors, develop a nurse-led workshop, and explore the experience of participation. RESEARCH APPROACH: A systematic intervention development process was used to design a self-management workshop for cancer survivors, which then was evaluated qualitatively. SETTING: Outpatient clinic in England. PARTICIPANTS: 26 healthcare professionals, charity workers, family members, and testicular cancer survivors participated in the intervention development process. Six testicular cancer survivors attended the workshop and participated in the postintervention focus group discussion. METHODOLOGIC APPROACH: Ten participants, including four survivors, completed the initial needs assessment interviews. Twenty-six participants then rated the identified needs on two dimensions: importance to self-management and changeability via a self-management intervention. Literature review and expert consultation were used to identify potential workshop components. To explore the experience of attending the intervention, six testicular cancer survivors who participated in the nurse-led workshop were interviewed six weeks later. FINDINGS: The workshop was well received by participants, who appreciated the goal-setting and information provision activities. The men also felt that they had benefited from the experience of being in the group. CONCLUSIONS: Testicular cancer survivors had unmet post-treatment needs. The systematic intervention development method led to an evidence-based workshop to address those needs. Men reported benefits from attending the workshop, which may help maintain and improve health. INTERPRETATION: Nurse-led workshops can address the current unmet needs of testicular cancer survivors. KNOWLEDGE TRANSLATION: Testicular cancer survivors may require support with health information, maintaining psychological health, and monitoring cancer symptoms. Survivors also need help planning and maintaining an active lifestyle. In addition, a brief workshop approach to intervention delivery is acceptable to testicular cancer survivors.

Towards a personalised approach to aftercare: a review of cancer follow-up in the UK.

INTRODUCTION: Due to growth in cancer survivorship and subsequent resource limitations, the current UK position of follow-up services is unsustainable. With people living longer after a cancer diagnosis, supported self-management for ongoing treatment-related chronic conditions is a fundamental component of aftercare services. Alternative models to traditional hospital aftercare require consideration in terms of clinical effectiveness and cost-effectiveness. METHODS: 'Evidence to Inform the Cancer Reform Strategy: The Clinical Effectiveness of Follow-Up Services after Treatment for Cancer' (Centre for Reviews and Dissemination 2007) has been updated using a number of quality-controlled databases. Correspondence with experts was also sought to identify current initiatives. RESULT: The review highlights a shift towards patient empowerment via individualised and group education programmes aimed at increasing survivor's ability to better manage their condition and the effects of treatment, allowing for self-referral or rapid access to health services when needed. The role of specialist nurses as key facilitators of supportive aftercare is emphasised, as is a move towards technology-based aftercare in the form of telephone or web-based services. CONCLUSIONS: The challenge will be replacing traditional clinic follow-up with alternative methods in a cost-effective way that is either as equally effective, or more so. To establish this, more rigorous trials are needed, with larger sample sizes and longer follow-up assessments. IMPLICATIONS FOR CANCER SURVIVORS: Increasing patient confidence to initiate follow-up specific to their needs is likely to increase the workload of primary care providers, who will need training for this.