Validade do relato familiar da função motora grossa (GMF-FR), perspectivas dos pais e suas opiniões

Abstract

INTRODUCTION: Current scientific evidence supports the implementation of family-centered therapies. The self-report of the experience of families about this practice is associated with improved satisfaction with services, mental health and less stress in dealing with the health system. The active involvement of public and patients in research is positive for the patient, researcher, public and the wider community. Studies involving users lead to the construction of protocols based on the reality of patients. With the COVID19 pandemic, the need for remote options for the assessment of children/adolescents with disabilities has come forefront, highlighting the need for new tools that provide support for online assessments and interventions for children, adolescents and families in their natural context. OBJECTIVE: To include parents’ perspectives and opinions in the final version of the instrument Gross Motor Function Family Report (GMF-FR) and analyze it’s measurement properties. METHODS: Quantitative and qualitative methodological study, with two phases. In the first phase, a qualitative study in which 12 parents of children and adolescents with CP were invited to participate in a semi-structured interview, with questions regarding the construction, format and scoring of the GMF-FR. In the second phase, 56 parents of children and adolescents with CP were invited to fill the modified version of the GMF-FR, modified after the first phase, and if They agreed, to fill it in again after 7-30 days (retest). In this phase, measures of discriminant validity (one-way Anova) between the levels of Gross Motor Function Classification System (GMFCS), basal-ceiling effect, test-retest reliability (ICC), Spearman-rho correlation between GMFFR and GMFCS levels, were performed. In all analyses, alpha=0.05 was considered. RESULTS: Twelve mothers of children and adolescents with cerebral palsy participated in the first phase and 56 in the second phase, 28 of which participated in the test-retest reliability. The families participating in the 1st phase mentioned the way in which the items were described, in addition to the presence of illustrations that represent each skill, as positive points, strengthening the real context in which their children are inserted. Through their contributions, there were changes in the scoring of the instrument, description and illustration, causing the instrument to be reduced from 30 to 28 items. In the 2nd phase, the GMF-FR showed excellent reliability with Cronbach's alpha of 0.98 and test-retest reliability, ICC= 0.98 (0.96≤IC95%≥0.99). The GMF-FR showed a statistically significant difference (p<0.001) between the final score and the GMFCS levels, except between levels I and II, in addition to showing a strong inverse correlation between the final score and severity of cerebral palsy according to the GMFCS levels (rhô=-0.93; p<0.001 ). No basal-ceiling effect was found in the results of the study (8.9%). CONCLUSION: The inclusion of the family in the construction of an evaluation instrument brought positive results for the researchers, family and potentially for the community in general. The GMF-FR is an instrument with excellent internal reliability and capable of quantitatively and discriminatively assessing the motor performance of children and adolescents with cerebral palsy in their natural environments.