67 Use of patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) in routine hospital care of children and young people: a scoping literature review

Wray, Jo; Terrell, Katharine; Kelly, Paul; Chesters, Heather; Oldham, Geralyn

doi:10.1136/archdischild-2023-gosh.67

Cited by 2 publications

(4 citation statements)

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“…These included the characteristics of questionnaires, an individual's beliefs, the administration of questionnaires, clinical work-flow designs, and incentivization [12]. Similar factors have been identified as potential barriers in the review by Wray et al, including the burden associated with the time needed to complete questionnaires, limited access to resources, and perceived unhelpfulness [18]. Clearly, these factors need to be taken into account when considering a broader implementation of patient-reported measures.…”

Section: Discussionmentioning

confidence: 94%

“…This data indicates the lack of a standardized approach and the relatively low use of PREMs in the pediatric setting [17]. This is reiterated by the work of Wray et al, indicating that out of 108 articles reporting use of PROMs/PREMs in routine pediatric hospital care, the absolute majority employed only PROMs, with only seven studies using both PROMs and PREMs [18]. These findings suggest that PREMs remain relatively understudied in the pediatric population, particularly in conjunction with PROMs, and that approaches to using electronic tools for their collection are limited.…”

Section: Discussionmentioning

confidence: 98%

“…Another reported barrier for successful implementation of PROMs and PREMs in routine practice is considered to be the burden on healthcare staff and patients associated with their administration [12,18]. A systematic review of electronic PROMs collection has revealed benefits of this approach as compared to paper-based collections, including faster completion, reduced costs, and better data quality.…”

Section: Discussionmentioning

confidence: 99%

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Integrated Collection of Patient-Reported Outcomes and Experiences in Children with Kidney and Hematological Diseases: A Pilot Study

et al. 2023

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We aimed to explore the feasibility and potential relevance of integrated electronic collection of patient-reported outcome and experience measures (PROM and PREM) in children with special healthcare needs (CSHCN) by using the example of children with kidney and hematological diseases. We performed a cross-sectional, single-center study of children <18 years of age. Children (≥10 years) and their parents received Generic PedsQL Core Scale 4.0 and custom PREM surveys to their email addresses via the REDCap platform, and the results were integrated into the hospital’s electronic health records system. A total of 192 patients (98 with kidney diseases and 94 with hematological diseases) were enrolled. The overall response rate was 51%, and the median time for completion of each proxy questionnaire was approximately three minutes. The lowest PROM scores were observed in the emotional and school functioning dimensions. More favorable experiences in the diagnosis establishment process were associated with higher scores in physical, social, school functioning, and total PROM scores. A better evaluation of the hospital’s environment was associated with higher social functioning, while better information provision correlated with higher physical functioning and total PROM scores. Our data indicates that integrated electronic collection of PROMs and PREMs in the population of CSHCN is feasible, but efforts to increase the response rate are needed. The associations between PROMs and PREMs suggest that future studies exploring targeted interventions at the healthcare service level to improve subjective patient outcomes are needed.

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Section: Discussionmentioning

confidence: 94%

Section: Discussionmentioning

confidence: 98%

Section: Discussionmentioning

confidence: 99%

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Integrated Collection of Patient-Reported Outcomes and Experiences in Children with Kidney and Hematological Diseases: A Pilot Study

et al. 2023

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“…Search and screening process. Adapted from the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis 2020 flow diagram template 14,28–94 …”

Section: Resultsmentioning

confidence: 99%

Involvement of children and young people in the conduct of health research: A rapid umbrella review

Wyatt,

Bell,

Cooper

et al. 2024

Health Expectations

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BackgroundPatient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research.AimsThis rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement.MethodsWe searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis.ResultsThe 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts‐based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership.ConclusionOverall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated.Patient/Public ContributionThis review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.

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67 Use of patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) in routine hospital care of children and young people: a scoping literature review

Cited by 2 publications

References 0 publications

Integrated Collection of Patient-Reported Outcomes and Experiences in Children with Kidney and Hematological Diseases: A Pilot Study

Integrated Collection of Patient-Reported Outcomes and Experiences in Children with Kidney and Hematological Diseases: A Pilot Study

Involvement of children and young people in the conduct of health research: A rapid umbrella review

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