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Patient-Reported Experience Measures in Pediatric Healthcare-A Rapid Evidence Assessment
C Bartholdson1,2, E Broström1,2, M D Iversen2,3,4
1Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
Insights
This review synthesizes research on patient-reported experience measures (PREMs) in pediatric care, highlighting a need for more child-centered data. Current studies often rely on proxy accounts, underscoring the importance of direct patient feedback.
Area of Science:
- Pediatric Healthcare Research
- Patient Experience Measurement
- Health Services Research
Background:
- Limited understanding of patient-reported experience measures (PREMs) in pediatric settings.
- Existing research often relies on adult proxies rather than direct child input.
- Need for validated pediatric-specific PREMs grounded in children's experiences.
Purpose of the Study:
- To systematically review the scientific literature on PREMs in pediatric healthcare.
- To identify current knowledge and gaps in pediatric patient experience research.
- To lay the groundwork for developing child-centered pediatric PREMs.
Main Methods:
- Comprehensive literature search across multiple databases (PubMed, Web of Science, CINAHL, etc.).
- Inclusion criteria applied to 316 identified studies, with 68 meeting requirements.
- Analysis of study design, publication trends, participant demographics, and identified experience domains.
Main Results:
- Majority of studies (72%) published 2015-2020, with a European focus (53%).
- Most studies utilized adult proxies and had over 100 participants.
- Identified 311 distinct domains of patient experience, categorized into 14 areas.
Conclusions:
- Significant reliance on proxy reports in pediatric PREMs research.
- Need to prioritize direct child reporting for accurate healthcare experience assessment.
- Foundation established for developing validated pediatric-PREMs based on children's perspectives.
Abstract:
This study aimed to describe what is known in the scientific literature about patient-reported experience measures (PREMs) in pediatric healthcare and identify areas for further exploration. PubMed, Web of Science, CINAHL, Google Scholar, COCHRANE, and SveMed+ combined with free text search in FireFox and Safari web browsers using Medical Subject Headings terms were used. Outcomes of interest were patient experience and measures of these constructs. Of the 316 studies identified, 68 met the inclusion criteria. Forty-eight studies (72%) were published between 2015 and 2020 and more than half (53%) were published in Europe. Most studies of PREMs in pediatric healthcare included adult proxies as participants. Seventy-eight percent of studies consisted of > 100 participants. Thirty-six studies (53%) were quantitative studies, 26 (38%) were evaluative studies of patient experience measures, and 6 (9%) were qualitative in design. Three hundred eleven domains were identified and further categorized into 14 domain areas. This research is important because it aims to amplify the voices of children in healthcare and establish a foundation for developing validated pediatric-PREMs that is grounded in children's firsthand experiences of care, rather than relying primarily on proxy accounts.
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