Health Behaviour Change Among Teenage and Young Adult Cancer Survivors

There is growing recognition that teenage and young adult (TYA) cancer survivors should adopt a healthy lifestyle in order to reduce the impact a cancer diagnosis has upon growth and development as well as long-term health. There is a need for health behaviour change interventions to be developed for TYA cancer survivors’ in the UK which, in line with the National Cancer Survivorship Initiative, should be effective, inexpensive, and have the potential to be rolled out nationwide. In order to address this need, the aim of this thesis was to develop a health behaviour intervention specifically for TYA cancer survivors. Specifically this thesis includes: a systematic review of existing interventions targeting health behaviour change among TYA cancer survivors; data on the proportion of TYA cancer survivors meeting current health behaviour recommendations in comparison to TYAs within the general population (Study 1); and both quantitative and qualitative data on TYA cancer survivors interest in receiving health behaviour information and preference regarding the format, delivery, and timing of such information (Study 2 and Study 3). The results of the literature review and the results of studies 1-3 were combined with data on health professionals’ views of health behaviour intervention delivery to young people with cancer (Study 4) to inform the development of a collection of health behaviour change intervention resources containing comprehensive lifestyle information and behaviour change support tools. These intervention resources were then formatively evaluated by TYA cancer survivors and TYA health professionals for relevance, appeal and usability (Study 5). Results demonstrate TYA cancer survivors have a high level of interest in receiving health behaviour change support and would be open to engaging with the proposed intervention materials. The findings from this thesis contribute towards the development of a best practice health behaviour intervention for TYA cancer survivors. Such an intervention could be widely disseminated leading to an improvement in TYA cancer survivorship

The physicAl aCtivity Counselling for young adult cancEr SurvivorS (ACCESS) trial: a protocol for a parallel, two-arm pilot randomized controlled trial

BackgroundYoung adults aged 18–39 years commonly experience persistent side effects following cancer treatment that can impair their quality of life. Physical activity (PA) holds promise as a behavioral intervention to mitigate persistent side effects and improve quality of life. Yet, few young adults are active enough to incur these benefits and efforts to promote PA after cancer treatment ends are lacking. Therefore, we developed a novel theory-driven behavior change intervention to promote PA via videoconferencing technology in young adults who have completed cancer treatment, and are undertaking a pilot randomized controlled trial (RCT) to gather evidence to inform the design of a large, full-scale RCT. The specific aims of this parallel, two-arm pilot RCT are to: (1) assess intervention and trial protocol feasibility and acceptability; and (2) generate data on PA behavior. To promote transparency, improve reproducibility, and serve as a reference for forthcoming publication of results, we present the study protocol for this pilot RCT (version 7) within this paper.MethodsYoung adults who have completed cancer treatment are being recruited from across Canada. After informed consent is obtained and baseline assessments are completed, participants are randomized to the intervention group (i.e., a 12-week behavior change intervention delivered via videoconferencing technology by trained PA counsellors) or usual care group (i.e., no intervention). Several feasibility outcomes covering enrollment, allocation, follow-up, and analysis are tracked by study staff. Acceptability is assessed through interviews exploring participants’ experiences, thoughts, and perspectives of the trial protocol (i.e., intervention and usual care groups), as well as participants’ views of the intervention and its mode of delivery (i.e., intervention group only) and PA counsellors’ experiences delivering the intervention. PA behavior is measured using accelerometers at baseline (pre-randomization), post-intervention, and at follow-up (24 weeks post-baseline).DiscussionThere are growing calls to develop interventions to support young adults’ motivation to engage in PA and adopt an active lifestyle to improve their quality of life after cancer treatment ends. Real-time videoconferencing shows promise for disseminating behavior change interventions to young adults and addressing participation barriers. Considering the importance of establishing intervention and trial protocol feasibility and acceptability prior to evaluating intervention efficacy (or effectiveness), this pilot RCT is critical to understand how participants embrace, engage with, and complete the intervention and trial protocol. Indeed, these data will help to determine which refinements, if any, are required to the intervention and trial protocol (e.g., implementation approach, evaluation methods) prior to a large, full-scale RCT aiming to test the effects of the intervention on PA behavior. Additionally, the PA behavior data collected will be useful to inform the sample size calculation for a large, full-scale RCT.Trial registrationThe trial was registered with the ClinicalTrials.gov database (ID: NCT04163042) on November 14, 2019, prior to the start of the trial in February, 2021

Exploring the digital technology preferences of teenagers and young adults (TYA) with cancer and survivors: a cross-sectional service evaluation questionnaire

PURPOSE: Digital technology has the potential to support teenagers and young adults (TYAs) with cancer from the onset of their disease into survivorship. We aimed to establish (1) the current pattern of use of TYA digital technologies within our service-user population, and (2) their preferences regarding digital information and support within the service. METHODS: A cross-sectional survey was administered as a paper and online self-completed questionnaire to TYAs aged 13–24 accessing outpatient, inpatient, and day care cancer services at a regional specialist centre over a 4-week period. RESULTS: One hundred two TYAs completed the survey (55.7% male; 39.8% female; 83.3% paper; 16.7% online; mean age 18.5 years [SD = 3.51]). Of the TYAs, 41.6% rated the importance of digital communication as “essential” to their lives. Half (51.0%) kept in contact with other patients they had met during treatment, and 12.0% contacted patients they had not met in person. Respondents wanted to receive clinical information online (66.3%) and use online chat rooms (54.3%). Future online services desired included virtual online groups (54.3%), online counselling or psychological support (43.5%), and receiving (66.3%) and sharing (48.9%) clinical information online. CONCLUSIONS: Young people with cancer are digital natives. A significant subgroup expressed a desire for digital resources from oncology services, though existing resources are also highly valued. Digital resources have potential to improve patient experience and engagement. IMPLICATIONS FOR CANCER SURVIVORS: There is considerable scope to develop digital resources with which TYAs can receive information and connect with both professionals and fellow patients, following diagnosis, through treatment and survivorship

Integrated out-of-hours care arrangements in England: observational study of progress towards single call access via NHS Direct and impact on the wider health system

Objectives: To assess the extent of service integration achieved within general practice cooperatives and NHS Direct sites participating in the Department of Health’s national “Exemplar Programme” for single call access to out-of-hours care via NHS Direct. To assess the impact of integrated out-of-hours care arrangements upon general practice cooperatives and the wider health system (use of emergency departments, 999 ambulance services, and minor injuries units). Design: Observational before and after study of demand, activity, and trends in the use of other health services. Setting: Thirty four English general practice cooperatives with NHS Direct partners (“exemplars”) of which four acted as “case exemplars”. Also 10 control cooperatives for comparison. Main Outcome Measures: Extent of integration achieved (defined as the proportion of hours and the proportion of general practice patients covered by integrated arrangements), patterns of general practice cooperative demand and activity and trends in use of the wider health system in the first year. Results: Of 31 distinct exemplars 21 (68%) integrated all out-of-hours call management by March 2004. Nine (29%) established single call access for all patients. In the only case exemplar where direct comparison was possible, cooperative nurse telephone triage before integration completed a higher proportion of calls with telephone advice than did NHS Direct afterwards (39% v 30%; p<0.0001). The proportion of calls completed by NHS Direct telephone advice at other sites was lower. There is evidence for transfer of demand from case exemplars to 999 ambulance services. A downturn in overall demand for care seen in two case exemplars was also seen in control sites. Conclusion: The new model of out-of-hours care was implemented in a variety of settings across England by new partnerships between general practice cooperatives and NHS Direct. Single call access was not widely implemented and most patients needed to make at least two telephone calls to contact the service. In the first year, integration may have produced some reduction in total demand, but this may have been accompanied by shifts from one part of the local health system to another. NHS Direct demonstrated capability in handling calls but may not currently have sufficient capacity to support national implementation

Observational study of the development and evaluation of a fertility preservation patient decision aid for teenage and adult women diagnosed with cancer: The Cancer, Fertility and Me research protocol

Introduction: Women diagnosed with cancer and facing potentially sterilising cancer treatment have to make time-pressured decisions regarding fertility preservation with specialist fertility services whilst undergoing treatment of their cancer with oncology services. Oncologists identify a need for resources enabling them to support women’s fertility preservation decisions more effectively; women report wanting more specialist information to make these decisions. The overall aim of the ‘Cancer, Fertility and Me’ study is to develop and evaluate a new evidence-based patient decision aid (ptDA) for women with any cancer considering fertility preservation to address this unmet need. Methods and analysis: This is a prospective mixed-method observational study including women of reproductive age (16 years +) with a new diagnosis of any cancer across two regional cancer and fertility centres in Yorkshire, UK. The research involves three stages. In Stage 1 the aim is to develop the ptDA using a systematic method of evidence synthesis and multidisciplinary expert review of current clinical practice and patient information. In Stage 2, the aim is to assess the face validity of the ptDA. Feedback on its content and format will be ascertained using both questionnaires and interviews with patients, user groups and key stakeholders. Finally, in Stage 3 the acceptability of using this resource when integrated into usual cancer care pathways at the point of cancer diagnosis and treatment planning will be evaluated. This will involve a quantitative and qualitative evaluation of the ptDA in clinical practice. Measures chosen include using count data of the ptDAs administered in clinics and accessed online, decisional and patient-reported outcome measures and qualitative feedback. Quantitative data will be analysed using descriptive statistics, paired sample t tests and confidence intervals; interviews will be analysed using thematic analysis. Ethics and dissemination: Research Ethics Committee approval (Ref: 16/EM/0122) and Health Research Authority approval (Ref: 194751) has been granted. Findings will be published in open access peer-reviewed journals, presented at conferences for academic and health professional audiences, with feedback to health professionals and program managers. The Cancer, Fertility and Me ptDA will be disseminated via a diverse range of open-access media, study and charity websites, professional organisations and academic sources. External endorsement will be sought from the International Patient Decision Aid Standards (IPDAS) Collaboration inventory of ptDAs and other relevant professional organisations e.g. the British Fertility Society. Trial registration number: NCT02753296 (www.clinicaltrials.gov); pre-results