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Patient-reported outcomes and experience measures in routine clinical practice for children: Current developments and challenges
This project established a cross- disciplinary ‘Child-Reported Outcomes and Experience’ research group within the MRC Centre of Epidemiology for Child Health, funded by the MRC Centre's Small Grant Award. The research group published a systematic literature review of vision-related patient outcome and experience measures (PROMs) for children ( 2013) and undertook a qualitative analysis of narratives and drawings about experience of illness in children with congenital heart defects (presented at Europaediatrics 2013, the Association for European Paediatric Cardiology conference 2013). A collaborative multi-professional workshop was convened in October 2012, bringing together researchers within ICH with clinical specialists based at our Biomedical Research Centre partners, Great Ormond Street Hospital and Moorfields Eye Hospital, as well as service users (parents). The workshop provided an opportunity to establish a large scale collaborative professional network to support the research and development of self-reported patient outcome and experience measures (PROMs and PREMs) for children and young people, and to apply and evaluate these in routine clinical practice. An MRC Public Engagement (Patient and Public Involvement) Award, funded user engagement focus group consultations with children and young people attending Great Ormond Street Hospital and their families and provided an important contribution to the workshop. Reports of the workshop and focus groups are available at UCL Discovery repository or through our website link.
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