The usefulness and acceptability of a personal health record to children and young people living with a complex health condition: A realist review of the literature.

Only nine studies were included, and they evaluated different personal health records in different health conditions and settings, so the review cannot tell you which record works best. Most included studies were qualitative or mixed methods, and only one was a randomised controlled trial, so the findings are not strong evidence of treatment effects. Three included studies were rated strong for methodological quality and six were rated moderate, so some findings rest on limited reports of analysis or unclear interview methods. The review was intended to focus on life-limiting or life-threatening conditions, but only one included study evaluated that group, so it says little about those children and families. In six of the nine studies, parents were mainly responsible for using the personal health record, so it does not show how well children and young people used the records themselves. Long-term health outcomes were not investigated, so the review cannot show whether personal health record use improved health outcomes over time. Only English-language articles were included, and studies that only developed a personal health record were excluded, so useful non-English work may have been missed. Many studies focused on parents' and young people's views and did not explicitly examine organisational issues, so service-level barriers may be under-reported.

Do not read this as proof that personal health records improve health outcomes. The review found reported benefits, but only nine heterogeneous studies, mostly qualitative or mixed methods, and no long-term outcomes.