The development and user evaluation of health behaviour change resources for teenage and young adult Cancer survivors

PLAIN ENGLISH SUMMARY: This paper describes the methods that were used to develop a health behaviour intervention specifically for teenage and young adult cancer survivors (TYACS). The program of work, carried out in partnership with CLIC Sargent (a UK based cancer charity for children and young people) was guided by The Behaviour Change Intervention Design Process. A systematic review of existing intervention studies was carried out and TYACS were surveyed on their interest in receiving health behaviour information and their preference regarding the format, delivery and timing of such information. Health professionals were also surveyed to gather their views on how health behaviour information would be best delivered to young people with cancer. The results of these studies informed the development of a collection of health behaviour change intervention resources containing comprehensive lifestyle information and behaviour change support tools. TYACS and TYA health professionals were invited to review and provide feedback on the relevance, appeal and usability of the resources. It is hoped that by involving TYACS and TYA representatives at every stage of intervention development the problem of low uptake and adherence commonly encountered during intervention piloting will be prevented. ABSTRACT: Background Teenage and Young Adult Cancer Survivors (TYACS) are advised to adopt a healthy lifestyle in order to reduce the impact of cancer and its treatments upon their long-term health. However, at present there are no interventions available in the UK to support TYACS to lead a healthy lifestyle. To inform the development of a lifestyle intervention for TYACS a partnership was set up between academic behavioural scientists and CLIC Sargent, a cancer charity which supports children and young people. Methods A series of studies to understand patient and professionals needs and perspectives regarding health behaviour change were carried out. TYACS were surveyed to gather data on their current health behaviour status; interest in, and experience of receiving, lifestyle advice; and preference regarding the type, format, and delivery of a lifestyle intervention. Health care professionals were surveyed simultaneously to gather their views on how best to promote health behaviour change to TYACS. In this paper we summarise key findings from the development work, the resulting lifestyle intervention, and new data from a preliminary evaluation study exploring TYACS and TYA health professionals’ views on the relevance, appeal and usability of the intervention resources. Results A collection of health behaviour change intervention resources containing lifestyle information and behaviour change support tools were developed. These intervention resources were well received by TYACS and health professionals with the majority rating the information as high quality, helpful and relevant. Over 80% of TYACS reported they would find the support tools ‘very appealing’ or ‘quite appealing’. TYACS and health professionals provided feedback on how the resources could be improved including commenting that more personalized or tailored health behaviour information would be beneficial. Discussion and conclusion It is hoped that by involving TYACS and TYA representatives at every stage of intervention development,and carrying out a preliminary evaluation of the intervention resources, the problem of low uptake and adherence commonly encountered during formal intervention piloting and evaluation will be prevented. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s40900-019-0142-6) contains supplementary material, which is available to authorized users.