Research project
Title: The child’s perspective of health and health care: Strategies for investigating self-reported outcomes and experience in children
Project timescale: From 03 January, 2012 to 01 December, 2012
(Added to website on: 31 October, 2012 - Date last updated: 29 November, 2012)
Source of funding:
Medical Research Council (MRC)
Medical Research Council (MRC) through an MRC Centre of Epidemiology for Child Health Small Grant and Public Engagement in Science/Public and Public Involvement Award
Aims: To establish academic-clinical-service user collaboration to support development and translation of paediatric patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) into clinical practice for children and young people.
Research designs used:
Study of views/experiences
Systematic review
Other:
Methods used to collect data:
Focus groups
Other (please specify): Qualitative narratives
Research project description: There has been an growing national initiative for development and application of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) as a means of obtaining patient-led assessment of their health (that is PROMs) and healthcare (that is PREMs). However, the advances in the routine clinical use of PROMs and PREMs in the NHS with adult patients have not been matched in paediatric health services. With these issues in mind, we (Val Tadic, Rachel Knowles and Jugnoo Rahi) have recently co-established a cross- disciplinary ‘Child-Reported Outcomes and Experience’ working group within our MRC Centre of Epidemiology for Child Health, undertaking activities aimed specifically at bridging, cross-fertilising and extending our on-going research in patient reported outcomes and experience of children with visual impairment and those with congenital heart defects. As part of this initiative, we also set out to organise a cross-disciplinary workshop on PROMs and PREMs in paediatric health services, with a view to reach out to other clinical and academic colleagues and encourage the discussion and exchange on the methodologies and routine use of PROMs and PREMs for children. The workshop was aimed specifically at academic and clinical professionals involved in PROM and PREM initiatives within the MRC Centre of Epidemiology for Child Health, UCL Institute of Child Health (ICH) and two of its clinical partners, Great Ormond Street Hospital (GOSH) and Moorfields Eye Hospital (MEH), with whom links have already been established in this area. The invited audience and participants included parent representatives of the families attending GOSH.
Stages at which the public were involved:
Disseminating research
Final Research Report
Contributing / commenting on final report
Speaking about the research eg
workshops, presentations
Prioritising topic areas
Other:
Description of public involvement in research stages: Prior to the multiprofessional workshop on 3 October 2012, we held service user consultations with patients attending Great Ormond Street Hospital Services (GOSH) and their parents as a first step to exploring patient and parent views of PROMs and PREMs in order to inform the workshop through service user perspective. Two parallel focus groups were held with a small group of children and young people who are patients of GOSH and adult family members (mainly parents). As well as capturing patient and family perspective on PROMs and PREMs and their routine use in paediatric healthcare settings, an aim was also to identify and invite parent representatives to attend the workshop and contribute to the discussion with professionals. Two fathers subsequently attended the workshop, participating in breakout group discussions and providing feedback. One parent contributed written feedback which was incorporated into the workshop report.
Training and support provided for either members of the public or researchers involved in the project:
Examples of ways the public have made a difference to the research project:
Evaluating the impact of public involvement in the research:
Details of publications or reports resulting from the research: - A report summarising the findings from the focus groups with children and young people and their parents. - A report summarising the workshop programme and discussion is currently in preparation and will be available shortly.
Links to Reports:
Patient Reported Outcome and Experience Measures (PROMs and PREMs): Service Users’ Perspectives
Was/is your project user controlled: No
For further information on the project, please contact:
Dr Val Tadic
Research Associate/Investigator
UCL Institute of Child Health
MRC Centre of Epidemiology for Child Health
30 Guilford Street
London
WC1N 1EH
United Kingdom
v.tadic@ucl.ac.uk
Dr Rachel Knowles
UCL Institute of Child Health
rachel.knowles@ucl.ac.uk
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