The Evaluation Measure for BRACe Experience (EMBRACE): developing a patient-reported outcome measure for infants with hip dysplasia

Craven, J, Theunissen, WWES, Lane, O, Beattie, S, Griffin, XL and Perry, DC ORCID: 0000-0001-8420-8252 (2025) The Evaluation Measure for BRACe Experience (EMBRACE): developing a patient-reported outcome measure for infants with hip dysplasia BONE & JOINT OPEN, 6 (11). pp. 1487-1494. ISSN 2633-1462, 2633-1462

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Abstract

Aims To identify or develop a patient-reported outcome measure (PROM) aligned with the family-cen-tred core outcome set (COS) for infants with developmental dysplasia of the hip (DDH) treated in a brace. Methods This study was conducted in fivee phases: 1) identification of relevant PROMs through two systematic literature reviews; 2) assessment of identified PROMs for content validity and relevance to the COS; 3) a consensus meeting with key stakeholders, including parents and clinicians; 4) development of a novel PROM; and 5) pilot testing with parents of infants treated in a brace. PROMs were assessed according to COSMIN criteria, and development was guided by stakeholder feedback. Results The systematic reviews ideptified two relevant PROMs: the Hip Worries Inventory (HWI) and the Infant and Toddler Quality of Life Questionnaire (ITQOL). Neither tool fully aligned with the COS, nor was considered suitable for comprehensive assessment in this population. The HWI was judged to lack domain coverage and negatively framed items, whereas the ITQOL was lengthy and burdensome. A consensus meeting supported the development of a new, concise PROM. The resulting Evaluation Measure for BRACe Experience (EMBRACE) includes eight items, scored using a Likert scale, across caregiver and infant domains. Pilot testing eopfitoed acceptability, clarity, and relevance. Conclusion The EMBRACE is a concise, family-centred PROM developed to tefleet the core domains that were prioritized by families and clinicians for children undergoing DDH brace treatment. It enables the impact of treatment to be captured on both infants and caregivers.

Item Type:	Article
Uncontrolled Keywords:	32 Biomedical and Clinical Sciences, 3202 Clinical Sciences, Clinical Research, Pediatric Research Initiative, 7.1 Individual care needs, Cancer, 3 Good Health and Well Being
Divisions:	Faculty of Health & Life Sciences Faculty of Health & Life Sciences > Inst. Life Courses & Medical Sciences Faculty of Health & Life Sciences > Inst. Life Courses & Medical Sciences > Inst. Life Courses & Medical Sciences Faculty of Health & Life Sciences > Inst. Life Courses & Medical Sciences > Inst. Life Courses & Medical Sciences (T&R staff) Faculty of Health & Life Sciences > Inst. Life Courses & Medical Sciences > Women's & Children's Health
Depositing User:	Symplectic Admin
Date Deposited:	09 Feb 2026 10:16
Last Modified:	16 Jun 2026 05:14
DOI:	10.1302/2633-1462.611.BJO-2025-0117.R1
Related Websites:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3196879
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