Development of the gait outcomes assessment list for lower-limb differences (GOAL-LD) questionnaire: a child and parent reported outcome measure

Jennifer A Dermott,Nancy M Salbach,Unni G Narayanan,F Virginia Wright

doi:10.1186/s12955-021-01775-z

Abstract

BackgroundTo develop a priority-based patient/parent reported outcome measure for children with lower-limb differences (LD) by adapting the Gait Outcomes Assessment List (GOAL) questionnaire.MethodsGuided by a conceptual framework of patient priorities, the GOAL questionnaire was iteratively modified and its sensibility evaluated by field-testing it on children with LD, and their parents. Cognitive interviews were conducted with a subgroup of these children, and an e-survey administered to a multidisciplinary group of health care professionals with expertise in paediatric LD. Findings were integrated to create the final version of the GOAL-LD.ResultsTwenty-five children (9–18 years), 20 parents, and 31 healthcare professionals evaluated the content and sensibility of the GOAL, with an emphasis on the relevance and importance of the items to patients’ health related quality of life (HRQL). This resulted in the retention of 26 of the original 50 items, elimination of 12, modification of 12, and addition of seven new items. The new 45-item GOAL-LD questionnaire was shown to be sensible, and its content deemed important.ConclusionsThe GOAL-LD questionnaire has a high level of face and content validity, and sensibility. It comprehensively captures the HRQL goals and outcomes that matter to children with LD and their parents. Following further psychometric evaluation, the GOAL-LD may serve as a much needed patient and parent reported outcome measure for this population.

Highlights

Pediatric lower-limb differences (LD) include a wide spectrum of congenital, developmental and acquired causes of limb deficiencies, deformities, and length discrepancies
Children with LD are faced with a variety of treatment options and often undergo multiple interventions throughout their childhood; yet we know very little about how this may impact their health-related quality of life (HRQL) [7]
These are better captured in the ICF domains of Activity and Participation, using patient-reported outcome measures (PROMs) that are designed to measure these outcomes [11]

Summary

Introduction

Pediatric lower-limb differences (LD) include a wide spectrum of congenital, developmental and acquired causes of limb deficiencies, deformities, and length discrepancies. Children with LD are faced with a variety of treatment options and often undergo multiple interventions throughout their childhood; yet we know very little about how this may impact their health-related quality of life (HRQL) [7] The benefits of these interventions, let alone their comparative effectiveness, are poorly quantified because there are no validated outcome measures developed for this population. Research on pediatric LD has focused on the ICF domain of Body Functions and Structures [8] such as radiographic measures of limb alignment and length, post-operative complications, and time to heal [10] These are important markers of the technical success of an intervention, one cannot assume that these correspond with HRQL outcomes that matter most to children/parents and are aligned with their priorities and goals. To develop a priority-based patient/parent reported outcome measure for children with lower-limb differences (LD) by adapting the Gait Outcomes Assessment List (GOAL) questionnaire

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