SynthesisQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2021
Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.
Synthesis in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 3 of them syntheses that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
24 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Self-reported perspective in rare genetic diseases: a systematic review of patient-reported outcome measures classified using the international classification of functioning, disability and health framework.Journal of patient-reported outcomes · 2026Pooled it
- Involvement of children and young people in the conduct of health research: A rapid umbrella review.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- The Use and Outcomes of Compassion-Focused Group Interventions With Children and Adolescent Clinical Populations: A Systematic Review and Narrative Synthesis.Clinical psychology & psychotherapyPooled it
- Health-Related Coping Behaviors Among Parents of Children with Inborn Errors of Metabolism: A Survey by Dietary Therapy, Child Age, and Diagnostic Category.International journal of neonatal screening · 2026Article
- Article
- German translation, cultural adaptation and linguistic validation of the PedsQL healthcare satisfaction module.Health and quality of life outcomes · 2026Article
- Assessing patient engagement approaches in the development of patient reported outcome measures.Journal of patient-reported outcomes · 2026Article
- Patient and Public Involvement in Paediatric Pragmatic Randomized Controlled Trials: A Mixed Methods Study.Children (Basel, Switzerland) · 2025Article
- Family partnerships to support equity and cultural humility in pediatric intervention research.Journal of pediatric psychology · 2025Article
- Developing an Inclusive Dance Guide for Children With Cerebral Palsy: A Co-Design Process and Initial Feasibility Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Content validity of mobility measures in arthrogryposis multiplex congenita: engaging clinicians and people with lived experience.Frontiers in rehabilitation sciences · 2025Article
- Development and Psychometric Validation of Perioperative Patient-Reported Experience Measures for Nursing Care in Surgical Patients.Journal of nursing management · 2025Article
- Exploring methods for creating or adapting knowledge mobilization products for culturally and linguistically diverse audiences: a scoping review.Archives of public health = Archives belges de sante publique · 2024Article
- Prioritizing Patient Reported Outcome Measures (PROMs) to use in the clinical care of youth living with mental health concerns: a nominal group technique study.Journal of patient-reported outcomes · 2024Article
- Engaging children and adolescents in the design and conduct of paediatric research.Frontiers in pediatrics · 2024Article
- Partnering with Families and Communities to Improve Child Health and Health Equity.Pediatric clinics of North America · 2023Review
- Academic health sciences libraries' outreach and engagement with North American Indigenous communities: a scoping review.Journal of the Medical Library Association : JMLA · 2023Article
- Oncology Providers' and Professionals' Experiences With Suicide Risk Screening Among Patients With Head and Neck Cancer: A Qualitative Study.JCO oncology practice · 2023Article
- Article
- A scoping review to identify and describe the characteristics of theories, models and frameworks of health research partnerships.Health research policy and systems · 2022Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeTo assess child and family engagement in the selection of patient-reported outcomes for clinical studies/clinical settings and development of patient-reported outcome measures (PROMs)/patient-reported experience measures (PREMs) across the pediatric literature.
methodsDatabases were reviewed: EMBASE, MEDLINE, and PsycINFO. Articles published from December 2009 to September 2018 pertaining to the selection of outcomes or development of PROMs/PREMs for children or families were included. The International Association for Public Participation (IAP2) Spectrum of Public Participation was used to classify levels of engagement across each article; IAP2 plots engagement on a spectrum across five stages (from minimal to most engagement): Inform, Consult, Involve, Collaborate, and Empower.
results9019 non-duplicate articles were screened; 36 articles met inclusion criteria, seven studies focused on the selection of outcomes, and 29 studies pertained to PROM/PREM development. Twenty-three articles adhered to 'Involve' level of engagement. Four articles were categorized as 'Collaborate,' seven articles were classified as 'Consult,' and three articles were categorized as 'Inform'.
conclusionChildren and families were sparsely engaged as co-conductors or equal partners in the selection or development of PRO research; involvement remained on the mid-low end of the IAP2 Spectrum. Engaging with children and families as collaborators can improve the patient-centredness, rigour, and applicability of PROM/PREM research.
Indexed as
Identifiers
33156433What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.