Reporting patient and public involvement practice with children and young people in the design and conduct of paediatric clinical studies

• In Event: Methods of involving young people in health research

Abstract

Background: Active involvement of patients and the public in the design and delivery of health research, rather than as ‘subjects’ of research has been encouraged (if not required) for many years. However, defining how this is realised in practice, especially where child and young patients are concerned is limited, partly due to the low level of reporting of patient and public involvement (PPI) in general.
To address the issue of the low level reporting of PPI, in April 2018 the National Institute for Health Research (NIHR) one of the largest funding bodies of research in the UK, advised authors of research it funds to refer to the Guidance for Reporting Involvement of Patients and the Public Checklist 2, Short Form(GRIPP2SF) to enhance the quality, transparency, and consistency of reporting PPI activities. The NIHR is one of the first health research funders to publish comprehensive accounts of its commissioned research within its own publicly and permanently available online Journals Library.

Objective: To explore how children and young people’s involvement in the design and conduct of clinical studies (in any type of intervention, comparison, or outcome) is reported. The aim was to examine in detail the reports that are completed by researchers about the processes of PPI with CYP. Attention would be paid to (a) the opportunities offered to children and young people, including models and stages of involvement, (b) any reported impacts of involvement, and (c) reported challenges and facilitators to involvement. It was not our intention to offer judgements about practice or individuals responsible for writing the reports.
Methods: A search of the NIHR Journals Library was undertaken and identified 32 reports for analysis from a search of 545 reports. Qualitative content analysis and Framework Analysis techniques were used to analyse the data. Workshops with paediatric methodologists and young people took place to gain wider consensus of the analysis tools used to assess the reports.
Results: The length of text to describe PPI with all stakeholders (parents, charities, adults, CYP, etc) varied from one short paragraph to full chapters within the main report or appendices. Only five reports fully met all the criteria for reporting PPI against the NIHR reporting expectations , three of these met all the GRIPP2SF criteria. The majority of reports (n=28) focused specifically on describing the how CYP were involved in the phases of research, and less attention was paid to describing the impact of involvement, and involvement in the dissemination of study results. Reflecting on lessons learnt about involving CYP was only reported in eight of the reports.
Conclusion: Despite the NIHR and GRIPP2 guidance, the reporting of PPI remains suboptimal. The majority of reports focused on the processes and tasks involved and paid less attention to what changes were made as a result of involvement. Despite this, this review was able to draw out useful intelligence about the current ‘state of play’ of PPI with CYP. The findings of this review will inform the development of ‘reporting’ guidelines informed by young people.

Author

• Jennifer Preston, University of Liverpool
  Presenting Author