Walking outcomes in cerebral palsy: What is the GOAL?

About two-thirds of children with cerebral palsy (CP) are ambulant. The desire of parents to see their child walk better is universal, a reflection perhaps of societal expectations. This desire might be tempered over time because of the lived experience, as other priorities emerge, as children begin to articulate their own wishes, and as the emphasis shifts (for some) from improving walking to optimizing mobility and the participation it promotes. Nonetheless, for many children with CP, their childhood is punctuated if not consumed by the multitude of interventions that aim to improve their gait. Are the years of therapy, bracing, injections, and surgery that they endure worthwhile? The emergence of patient-reported outcome measures (PROMs) arose from the recognition that patients should be the judge of the effectiveness of the interventions they receive rather than the interveners. The Gait Outcomes Assessment List (GOAL) questionnaire was developed specifically to serve this purpose for ambulatory children with CP. The Framework of Patient Priorities (https://lab.research.sickkids.ca/pscoreprogram/) informed the compilation of a comprehensive list of gait-related goals derived from children with CP and their parents. This list makes up the content of the GOAL and spans all domains of the International Classification of Functioning, Disability and Health, with a particular emphasis on participation and personal factors. Developmental Medicine & Child Neurology has previously published work on the validation of the GOAL.1 This issue includes two more studies that add to that effort. Stout et al.2 reported on the test–retest reliability of the GOAL, a fundamental property of any measurement. This important paper informs sample size calculations for studies that use the GOAL as an outcome measure. It enables users to separate the signal from the noise when interpreting differences or changes in the total and domain scores of the GOAL.2 Although a PROM might be the best way to measure outcomes for research, it does little to benefit the respondent who completes it. The GOAL is unique in that it was designed to serve both as a PROM and as an instrument to elicit individual goals. Respondents not only report their performance for each item, but also indicate whether making an improvement in that item is an important goal for them. The importance rating does not contribute to the total or domain score. Munger et al.3 proposed scoring the importance of the goals as a measure of goal prioritization. They evaluated the psychometric properties of this feature. Users of the GOAL will be reassured that the factor analysis largely supports the domain structure of the questionnaire. It remains to be seen how the scoring of the goal importance ratings, as proposed, adds value to the list of important goals generated by the GOAL. The focus of these papers has been on the parent version of GOAL. But what about the child's perspective?4 The child version of the GOAL must be administered concurrently whenever possible because it might reveal important differences in priorities and goals between parents and their children, which must be recognized, if not reconciled, to truly inform decision-making. The reliability and validity of the child version must be demonstrated and the responses between parents and children compared to better understand their differences. As evidence of the validity and value of the GOAL questionnaire accumulates, it has the potential to become the outcome measure of choice for gait-related interventions for this population. Its ability to concurrently elicit patient and parent goals provides the impetus for shared decision-making, as well as holding clinicians accountable for treatments to address those goals. The GOAL questionnaire provides both the means to find out what patients and parents are hoping to achieve from these interventions and whether these goals are met. Not required.