Lynn Batehup

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

IntroductionDue 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.ResultThe 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.ConclusionsThe 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 survivorsIncreasing 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.

Managing fatigue after cancer treatment: development of RESTORE, a web-based resource to support self-management

The aim of this study is to co‐create an evidence‐based and theoretically informed web‐based intervention (RESTORE) designed to enhance self‐efficacy to live with cancer‐related fatigue (CRF) following primary cancer 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.

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.

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

PurposeAs 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.MethodsA 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).ResultsAll 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.ConclusionComputer 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 SurvivorsAn 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.

Trajectories of quality of life, health status and personal wellbeing up to two years after curative intent treatment for colorectal cancer: results from the UK ColoREctal Wellbeing (CREW) cohort study

Background: It has been reported that a quarter of people diagnosed with cancer lack social support. Online cancer communities could provide this form of support. Sixty-one per cent of adults in the UK access social media every day and online cancer communities are rising in popularity. However, there is limited evidence about how people use online cancer communities, and how they may, or may not, support people affected by cancer. Aims: This study aims to explore experiences of people affected by cancer visiting online cancer communities. Methods: A qualitative study was conducted using a constructivist grounded theory approach. Data were generated through semi-structured interviews with people who had visited online cancer communities, including people diagnosed with cancer and their family members. Results: A core category was developed and labelled ‘navigating cancer using online communities’. Participants used support in communities to navigate challenges they faced with cancer. This produced three categories of experience in online communities. Firstly, the advice of community members set participants on a ‘journey to become informed’. Secondly, participants were cast into a ‘journey to recreate identity’ as they connected and formed friendships online. Thirdly, participants navigated a ‘journey through different online worlds’ to the most relevant and often hidden communities. Conclusions: Social support is prevalent in online communities, multifaceted and mobilises active self-management in cancer care. This theoretical framework can inform the development of existing online communities to suit the needs of people affected by cancer. Further research should consider online communities in interventions for cancer self-management.

Exploring the need for, and feasibility of, a web-based self-management resource for teenage and young adult cancer survivors in the UK

The growth in social networking sites and online forums make the internet a potential platform to be considered for the provision of self-management and e-learning support to young people following cancer treatment. However, the feasibility and potential barriers to this as a post treatment option should be considered. A mixed methods approach was adopted that included an online survey, focus groups and interviews with cancer survivors, their parents, and information technology, clinical and social work professionals to consider the potential of a web-based self-management resource. Barriers were identified to the delivery of care using this method. Developing such a self-management system requires close working between IT and clinical staff, alongside patient representation and usability expertise. As computer access and use amongst this group is commonplace, there is an expectation that self-management needs will be met at least partially in this way in the future.