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

Abstract

Background 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. Methods Guided 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. Results Twenty-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. Conclusions The 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.

Quality of patient- and proxy-reported outcomes for children with impairment of the lower extremity: A systematic review using the COnsensus-based Standards for selection of health Measurement INstruments methodology

“…To determine the methodological quality of PROM development, a study should report on the comprehensibility and comprehensiveness of the instrument. Two studies 25 , 30 reported on these parameters and were rated as “adequate.” Two studies 34 , 47 reported on these parameters and were rated as “very good.”…”

“…During our analyses, four PROMs were supported with evidence on PROM development and/or content validity. The OxAFQ-c, LIMB-Q, and GOAL-LD 25 , 34 , 47 provided adequate quality of evidence on content validity, the most important psychometric property when determining whether or not the instrument has the ability to detect how well an instrument covers all relevant parts of the construct it aims to measure. The KOOS-Child provided very good evidence on the respective PROM development but no evidence concerning content validity.…”

Can the Lower Extremity Functional Scale Be Used in Children and Adolescents? A Validation Study

“…These include the Activities Scale for Kids-Performance (ASK-p), 21 Short Form Survey-36 (SF-36), 22 Functional Disability Inventory, 23 Pediatric Toronto Extremity Salvage Score (pTESS), 24 and PedsQL. 25 There are several instruments that measure lower limb functions in children, but they contain sections to target a specific anatomical site or condition, such as the International Knee Documentation Committee (IKDC), 25 Lysholm Knee Scoring Scale, 26 Gait Outcomes Assessment List for Children with Lower Limb Difference (GOAL-LD) 27,28 , and LIMB-Q Kids. 26,29 Finally, the Hospital for Special Surgery Pediatric Functional Activity Brief Scale (HSS Pedi-FABS) 30 is simple to use, but it is designed for athletically active adolescents between the age of 10 and 18 years.…”

Clinical outcomes measurement in pediatric lower limb prosthetics: A scoping review

“…Limb Differences Questionnaire (GOAL-LD) One article [6] examined psychometric properties of the GOAL-LD, a patient-reported outcome measure assessing six domains including gait function/mobility, pain/discomfort/fatigue, physical activities/games/recreation, gait appearance, use of braces/assistive devices, and body image/selfesteem. The GOAL-LD was adapted from the original Gait Outcomes Assessment List (GOAL) [7] for use with children who have lower limb differences.…”