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Additional file 1. Your individual thoughts and ranking about the most important areas for improvement for young people nearing the end of active cancer treatment.

Additional file 2: Table S1. Details regarding how services could prepare young people earlier around the ongoing impact of cancer and cancer treatment. Table S2. How standardised and continued follow-up of young people’s emotional well-being could be implemented. Table S3. Details of what information and resources specific to young people need to be developed, and the format of these resources.

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Sarah Lea,1 Ana Martins,1 Sue Morgan,2 Jamie Cargill,3 Rachel M Taylor,1 Lorna A Fern11Cancer Division, University College London Hospitals NHS Foundation Trust, London, UK; 2Teenage Cancer Trust Unit, Leeds Teaching Hospitals NHS Trust, Leeds, UK; 3TYA Cancer Service South West, Bristol Haematology and Oncology Centre, Bristol, UKCorrespondence: Rachel M TaylorCancer Clinical Trials Unit, 1st Floor East, University College London Hospitals NHS Foundation Trust, 250 Euston Road, London NW1 2PG, UKTel +44 203 447 7700Email rtaylor13@nhs.netPurpose: The internet is integral to young people, providing round-the-clock access to information and support. Young people with cancer report searching for online information and support. What they search for and why varies across their timeline and is mainly driven by negative emotion. We sought to understand how health care professionals (HCPs) perceived online information and support for young people with cancer.Population and methods: Semi-structured interviews with eight HCPs across the UK informed the development of a survey, completed by 38 HCPs. Framework analysis was used to identify key themes and the survey was analyzed descriptively.Results: Seven themes emerged as integral to HCP’s perceptions of online information and support, these included: views about young people’s use of online resources; how needs change along the cancer timeline; different platforms where HCPs refer young people to online; whether young people’s online needs are currently met; recognition of the emotional relationship between young people and the internet; barriers and concerns when referring young people to online resources; and strategies used in practice.Conclusion: Professionals play an important role in signposting young people to online resources, where they are confident about the accuracy and delivery of information. The biggest perceived barrier to facilitating online access was the cost to the NHS, and most concerning factor for HCPs was keeping young people safe online. There is a need to develop online resources specific for young people on psychosocial topics beyond treatment to support young people and HCPs through this period.Keywords: communication, internet, teenager, young adult, adolescent, unmet needs, support, information, online

Background. Previous reviews of outcomes in specific sarcoma populations suggest patients have poor quality of life. In most of these reviews, there is a predominant focus on physical function rather than psychosocial outcome. The aim of this review was to describe the psychosocial impact of diagnosis and treatment on patients with all types of sarcoma. Methods. Searches were conducted through six electronic databases for publications of any study design using a validated patient-reported outcome measure reporting the psychosocial impact in this population. Results. Eighty-two studies fulfilled the inclusion criteria. Most (65%) were assessed of being of reasonable quality. The most common aspect of psychosocial wellbeing measured was quality of life (80%). Due to the heterogeneity of methods, outcomes, and populations, it was not possible to make definitive conclusions. It seems there is an improvement in the physical aspects of quality of life over time but not in psychosocial function or mental health. There was no change in mental health scores, but patients reported an improvement in adjusting to normal life. There are no differences according to the type of surgery patients receive, and psychosocial outcomes tend to be poorer than the general population. There is no consistency in identifying the factors that predict/influence psychosocial wellbeing. Conclusion. The published literature does not provide a clear understanding of the impact of sarcoma diagnosis and treatment on psychosocial wellbeing. Instead, the review demonstrates a need for well-designed studies in this area and a more consistent approach to the measurement of patient-reported outcomes, which include psychosocial domains. Recommendations for future research have been proposed.

Introduction: Patient-reported outcomes (PROs) are increasingly included within cancer clinical trials. If appropriately collected, analysed and transparently reported these data might provide invaluable evidence to inform patient care. However there is mounting indication the design and reporting of PRO data in cancer trials may be suboptimal. This programme of research will establish via three interlinked studies whether these findings are applicable to UK cancer trials, and if so, how to best enhance the way PROs are assessed, managed and reported in clinical trials. This study will explore with key stakeholders factors that influence optimal PRO protocol content, implementation and reporting; and make recommendations for training and guidance. Methods and analysis: Semi-structured interviews will be conducted with members of key stakeholder groups. The purposive sample of up to 48 participants will include: (1) trial Chief Investigators, trial management group (TMG) members, statisticians and research nurses (RNs) of cancer trials including primary or secondary PRO, recruited via the National Cancer Research Institute (NCRI) Clinical Studies Group and Consumer Liaison Group and the UK Clinical Research Collaboration Registered UK Clinical Trial Unit (UKCRC-UKCTU) Network; (2) NCRI CLG members; (3) international experts in PRO oncology trial design and (4) journal editors and funding bodies. Data will be analysed using directed thematic analysis employing a coding frame and modified as analysis progresses. Formal triangulation of coding and member checking will be employed to enhance credibility. Ethics and dissemination: This study was approved by the University of Birmingham Ethics Committee (Ref: ERN_17-0085). Findings will be disseminated via conference presentations, peer-review journals, patient groups and social media (@CPROR_UoB; http://www.birmingham.ac.uk/cpror). Strengths and limitations • This novel study will capture perspectives on the barriers and enablers of optimal PRO practice from a comprehensive range of stakeholders with experience of PRO data collection and reporting. • The semi-structured interview format ensures a replicable process while allowing sufficient freedom to explore new and emerging concepts. • The recruitment strategy involves seeking participants through networks occupied by EPiC Senior Management Group members. However, any limitation to sample representativeness and diversity will be mediated through the use of other recruitment avenues including the authorship lists of the protocols/publications included in Phase I. • Study is at risk of self-selection and social-desirability bias. Participants are likely to take part if they have a pre-existing interest in PROs specifically and when recounting their experiences and insights are likely to wish to portray themselves in a positive manner due to the nature of this study.

Purpose: Teenage and young adult cancer care in England is centralised around 13 principal treatment centres, alongside linked ‘designated’ hospitals, following recommendations that this population should have access to ‘age-appropriate care’. The term ‘age-appropriate care’ has not yet been defined: it is however the explicit term used when communicating the nature of specialist care. The aim in this study was to develop an evidence-based, contextually relevant and operational model defining ‘age-appropriate care’ for teenagers and young adults with cancer. Patients and methods: A mixed methods study was conducted comprising (i) semi-structured interview data from young people with cancer and healthcare professionals involved in their care (ii) an integrative literature review to identify current understanding and use of the term ‘age-appropriate care’ (iii) synthesis of both sets of data to form a conceptual model of age-appropriate care. A combination of qualitative content, thematic and framework analysis techniques were used to analyse and integrate data. Results: Analysis and synthesis across data sources enabled identification of seven core components of age-appropriate care, which are presented as a conceptual model: best treatment; healthcare professional knowledge; communication, interactions and relationships; recognising individuality; empowering young people; promoting normality; and the environment. Sub-themes of healthcare professional clinical and holistic expertise and the environment comprising of both physical and social elements also emerged. Conclusion: The proposed model, necessarily constructed from multiple components, presents an evidence-based, comprehensive structure for understanding the nature of ‘age-appropriate care’. It will be useful to clinicians, health service managers and researchers who are designing, implementing and evaluating interventions that might contribute to the provision of age-appropriate care. While the individual elements of age-appropriate care can exist independently or in part, age-appropriate care is optimal when all seven elements are present, and could be applied to the care of young people with long-term conditions other than cancer.