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 evaluate patient and parent reported outcome measure for this population.

Development and sensibility assessment of a health‐related quality of life instrument for adults with severe disabilities who are non‐ambulatory

“…The second step was the evaluation of the CPADULT‐v1 concerning the adaptation process and assessing content validity by means of an e‐survey among experts in the field. We aimed to include a minimum of 25 participants with different professional background and various levels of experience (Dermott, 2015 ). The inclusion criteria were: healthcare psychologists, physicians (physiatrists and physicians working with persons with intellectual disabilities), researchers, therapists who were professionally involved with adults with severe motor and intellectual disabilities who are non‐ambulatory for at least 1 year.…”

“…Subsequently, the results of the e‐survey were reviewed in the research team applying the same general principle as in step 1. A question was only considered to be rejected if it was suggested by more than 10% of the experts (Dermott, 2015 ). The analysis of the results of the e‐survey resulted into the CPADULT‐v2.…”

“…Sensibility specifically assesses whether an instrument is meaningful to respondents. Evaluation of sensibility is often qualitative and frequently based on the judgment of clinicians and individuals for whom the questionnaire was developed (Collins, 2003 ) (Dermott, 2015 ) (O'Brian et al, 2013 ). With a thorough development of the instrument and evaluation of its sensibility, we aim to set a firm base for the assessment of the psychometric evaluation of the instrument in a future study.…”

The Gait Outcomes Assessment List for Children With Lower Limb Difference (GOAL-LD): Assessment of Reliability and Validity

“…The GOAL-LD has been shown to have good face and content validity. 11 The GOAL-LD assesses the child's status on 44 items within 6 domains: Domain A: walking and getting around; Domain B: pain, discomfort, and fatigue; Domain C: physical activities, games, and recreation; Domain D: gait appearance; Domain E: use of braces and assistive devices; Domain F body image and self-esteem. There is also a separate section (Domain G) for children and their parents to document additional meaningful goals.…”