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

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 pelvic cancer patients. 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. 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. 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 improvemen

Development of an e-health app to support women prescribed adjuvant endocrine therapy after treatment for breast cancer

Background. Adjuvant endocrine therapy (AET) is prescribed to women for 5–10 years after treatment for estrogen receptor positive (ER+ve), early-stage breast cancer. AET has proven effectiveness in reducing the risk of recurrence of breast cancer and mortality. However, adherence is known to be suboptimal with around 20% discontinuing by 2 years and up to 50% discontinuing by 5 years. Interventions are needed to support women taking AET after breast cancer. The aim of this study was to develop and pilot test an e-health app for this population. Methods. Two focus groups (n=15) and five interviews were conducted with women following treatment for early-stage breast cancer to assess the likely acceptability of an e-health app and to inform the content (Phase I). Following development of a prototype e-health app, a simple heuristic usability test was completed by five women in order to identify any design usability problems (Phase II). A further 18 women used the app for 1 month between July and August 2016, after which they were interviewed by telephone to collect their experiences and views of the app (Phase III). Results. The prototype e-health app included evidence-based information on effectiveness of AET, an electronic side-effects diary, a peer support forum, a repeat prescription reminder, suggested strategies for facilitating adherence and managing any side effects that occur, and a link to further evidence and useful organizations for further information and support. The app was received positively by women. Women found the app useful as it emphasized the importance of taking AET, helped them manage their side effects and provided details of support organizations, while offering empathy and exchange of suggestions for self-management strategies through the peer support forum. Conclusion. Overall, findings suggest that this novel e-health app has potential as a feasible medium for promoting adherence to AET. Future research should evaluate the efficacy of the app in supporting women and promoting adherence

Living with and beyond cancer with comorbid illness:a qualitative systematic review and evidence synthesis

Purpose: To identify the qualitative evidence on the experience of cancer and comorbid illness from the perspective of patients, carers and health care professionals to identify psycho-social support needs, experience of health care, and to highlight areas where more research is needed. Methods: A qualitative systematic review following PRISMA guidance. Relevant research databases were searched using an exhaustive list of search terms. Two reviewers independently screened titles and abstracts and discussed variations. Included articles were subject to quality appraisal before data extraction of article characteristics and findings. Thomas and Harden’s thematic synthesis of extracted findings was undertaken. Results: Thirty-one articles were included in the review, covering a range of cancer types and comorbid conditions; with varying time since cancer diagnosis and apparent severity of disease for both cancer and other conditions. The majority of studies were published after 2010 and in high income countries. Few studies focused exclusively on the experience of living with comorbid conditions alongside cancer; such that evidence was limited. Key themes identified included the interaction between cancer and comorbid conditions, symptom experience, illness identities and ageing, self-management and the role of primary and secondary care. Conclusions: In addition to a better understanding of the complex experience of cancer and comorbidity, the review will combine with research prioritisation work with consumers to inform an interview study with the defined patient group. Implications for Cancer Survivors: Expanding this evidence base will help to illuminate developing models of cancer patient-centred follow-up care for the large proportion of patients with comorbid conditions

Dismantling the present and future threats of testicular cancer: a grounded theory of positive and negative adjustment trajectories

Testicular cancer commonly affects men in the prime of their lives. While survival rates are excellent, little previous research has examined men’s experiences of adjustment to survivorship. We aimed to explore this issue in younger testicular cancer survivors

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

The psychosocial experiences of human papillomavirus (HPV) positive oropharyngeal cancer patients following (chemo)radiotherapy : a systematic review and meta-ethnography

Objective. The UK incidence of oropharyngeal cancer has risen sharply over the last 30 years with an increase in human papillomavirus (HPV) associated diagnoses, most prevalent in younger, working age populations. This meta-ethnography explores the psychosocial needs of HPV+ve oropharyngeal cancer patients during early recovery following (chemo)radiotherapy. Methods. Meta-ethnography methods were used, based on the approach of Noblit and Hare. Systematic searches for relevant qualitative studies were conducted in five electronic databases (MEDLINE, PubMed, CINAHL, PsycINFO and Cochrane database) between 2010 and 2021, followed by citation searching. Results. Twenty-three papers exploring the psychosocial needs of HPV+ve oropharyngeal cancer patients after treatment were included. Findings were synthesised to develop five constructs: ‘gaps in continuity of support from healthcare professionals’ reflecting unmet needs; ‘changes to self-identity’ revealing the comprehensive disruption of this disease and treatment; ‘unrealistic expectations of recovery’ highlighting the difficulty of preparing for the impact of treatment; ‘finding ways to cope’ describing the distinct complexity of this experience; and ‘adjusting to life after the end of treatment’ exploring how coping strategies helped patients to regain control of their lives. Conclusions. Completing (chemo)radiotherapy signalled a transition from hospital-based care to home-based support, challenging patients to address the constructs identified. An unexpectedly difficult and complex recovery meant that despite a favourable prognosis, poor psychosocial well-being may threaten a successful outcome. The provision of tailored support is essential to facilitate positive adjustment

Caring for people living with, and beyond, cancer: an online survey of GPs in England

This is the final version of the article. It first appeared from the Royal College of General Practitioners via http://dx.doi.org/10.3399/bjgp15X68740