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Transition of young people from childrens into adults services: what works for whom and in what circumstances - protocol for a realist synthesis

Por: Sipanoun · P. · Aldiss · S. · Porter · L. · Morgan · S. · Powell · E. · Gibson · F.
Introduction

The process of transitioning young people from children’s or adolescents’ health services into adults’ services is a crucial time in the lives and health of young people and has been reported to be disjointed rather than a process of preparation in which they are involved. Such transitions not only fail to meet the needs of young people and families at this time of significant change, but they may also result in a deterioration in health, or disengagement with services, which can have deleterious long-term consequences. Despite the wealth of literature on this topic, there has yet to be a focus on what works for whom, in what circumstances, how and why, in relation to all young people transitioning from children’s into adults’ services, which this realist synthesis aims to address.

Methods and analysis

This realist synthesis will be undertaken in six stages: (1) the scope of the review will be defined; (2) initial programme theories (IPTs) developed; (3) evidence searched; (4) selection and appraisal; (5) data extraction and synthesis; and (6) finally, refine/confirm programme theory. A theory-driven, iterative approach using the ‘On Your Own Feet Ahead’ theoretical framework, will be combined with an evidence search including a review of national transition policy documents, supplemented by citation tracking, snowballing and stakeholder feedback to develop IPTs. Searches of EMBASE, EMCARE, Medline, CINAHL, Cochrane Library, Web of Science, Scopus, APA PsycINFO and AMED will be conducted from 2014 to present, supplemented with grey literature, free-text searching (title, abstract and keywords) and citation tracking. Data selection will be based on relevance and rigour and extracted and synthesised iteratively with the aim of identifying and exploring causal links between contexts, mechanisms and outcomes. Results will be reported according to the Realist And Meta-narrative Evidence Syntheses: Evolving Standards Quality and Publication Standards.

Ethics and dissemination

This realist synthesis forms part of the National Transition Evaluation Study, which has received ethical and regulatory approval (IRAS ID: 313576). Results will be disseminated through peer-review publication, conference presentations and working with healthcare organisations, stakeholder groups and charities.

Trial registration number

NCT05867745.

PROSPERO registration number

CRD42023388985.

Research priorities for childrens cancer: a James Lind Alliance Priority Setting Partnership in the UK

Por: Aldiss · S. · Hollis · R. · Phillips · B. · Ball-Gamble · A. · Brownsdon · A. · Chisholm · J. · Crowther · S. · Dommett · R. · Gower · J. · Hall · N. J. · Hartley · H. · Hatton · J. · Henry · L. · Langton · L. · Maddock · K. · Malik · S. · McEvoy · K. · Morgan · J. E. · Morris · H. · Parke
Objectives

To engage children who have experienced cancer, childhood cancer survivors, their families and professionals to systematically identify and prioritise research questions about childhood cancer to inform the future research agenda.

Design

James Lind Alliance Priority Setting Partnership.

Setting

UK health service and community.

Methods

A steering group oversaw the initiative. Potential research questions were collected in an online survey, then checked to ensure they were unanswered. Shortlisting via a second online survey identified the highest priority questions. A parallel process with children was undertaken. A final consensus workshop was held to determine the Top 10 priorities.

Participants

Children and survivors of childhood cancer, diagnosed before age 16, their families, friends and professionals who work with this population.

Results

Four hundred and eighty-eight people submitted 1299 potential questions. These were refined into 108 unique questions; 4 were already answered and 3 were under active study, therefore, removed. Three hundred and twenty-seven respondents completed the shortlisting survey. Seventy-one children submitted questions in the children’s surveys, eight children attended a workshop to prioritise these questions. The Top 5 questions from children were taken to the final workshop where 23 questions in total were discussed by 25 participants (young adults, carers and professionals). The top priority was ‘can we find effective and kinder (less burdensome, more tolerable, with fewer short and long-term effects) treatments for children with cancer, including relapsed cancer?’

Conclusions

We have identified research priorities for children’s cancer from the perspectives of children, survivors, their families and the professionals who care for them. Questions reflect the breadth of the cancer experience, including diagnosis, relapse, hospital experience, support during/after treatment and the long-term impact of cancer. These should inform funding of future research as they are the questions that matter most to the people who could benefit from research.

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