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OBJETIVO: Refinar o Relato Familiar da Motricidade Grossa (GM­FR) utilizando a contribuição dos pais e avaliar as suas propriedades psicométricas. MÉTODO: Neste estudo metodológico, 12 pais de crianças e adolescentes com paralisia cerebral (PC), com idade entre 2 e 18 anos, classificados em todos os níveis do Sistema de Classificação da Função Motora Grossa (GMFCS), foram entrevistados sobre sua experiência na conclusão do GM­FR (validade de conteúdo). O feedback dos pais foi usado para refinar o instrumento que foi então preenchida por 146 famílias para avaliar a consistência interna, e a validade discriminativa e concorrente. 46 pais completaram o GM­FR novamente, 7 a 30 dias depois, para avaliar a confiabilidade teste­reteste. RESULTADOS: A pontuação do GM­FR, as imagens, as descrições e o número total de itens foram revisados com base no feedback dos pais. O GM­FR versão 2.0 demonstrou alta consistência interna (α de Cronbach = 0,99), ausência de efeitos piso/teto e excelente confiabilidade teste­reteste (coeficiente de correlação intraclasse = 0,99). Os escores do GM­FR discriminaram entre os níveis do GMFCS (p < 0,05) e foram fortemente correlacionados negativamente com o nível do GMFCS (r = −0,92; p < 0,001). Os escores do GM­FR correlacionaram­se de forma positiva e forte com o Gross Motor Function Measure­66 (r = 0,94; p < 0,001) e com o domínio de mobilidade do Pediatric Evaluation of Disability Inventory ­ Computer Adaptive Test (r = 0,93; p < 0,001). INTERPRETAÇÃO: A participação ativa das famílias no desenvolvimento do GM­FR facilitou a criação de um instrumento amigável à família. Este estudo fornece fortes evidências de confiabilidade e validade para apoiar o uso do GM­FR na prática clínica e em pesquisas para avaliar o desempenho motor grosso de crianças e adolescentes com PC.

RESUMEN

AIM: To refine the Gross Motor Family Report (GM-FR) using parents' input and to evaluate its psychometric properties. METHOD: In this measurement study, 12 parents of children and adolescents with cerebral palsy (CP), aged 2 to 18 years, classified in all levels of the Gross Motor Function Classification System (GMFCS), were interviewed about their experience completing the GM-FR (content validity). Parents' feedback was used to refine the measure which was then completed by 146 families to evaluate internal consistency, and discriminative and concurrent validity. Forty-six parents completed the GM-FR again, 7 to 30 days later, to evaluate test-retest reliability. RESULTS: GM-FR scoring, pictures, descriptions, and the total number of items were revised based on parents' feedback. The GM-FR version 2.0 demonstrated high internal consistency (Cronbach's α = 0.99), no floor/ceiling effects, and excellent test-retest reliability (intraclass correlation coefficient = 0.99). GM-FR scores discriminated between GMFCS levels (p < 0.05) and were strongly negatively correlated with GMFCS level (r = -0.92; p < 0.001). GM-FR scores correlated positively and strongly with the Gross Motor Function Measure-66 (r = 0.94; p < 0.001) and the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test mobility domain (r = 0.93; p < 0.001). INTERPRETATION: Active participation of families in the GM-FR's development facilitated creation of a family-friendly instrument. This study provides strong evidence of reliability and validity to support GM-FR use in clinical practice and research for assessing gross motor performance of children and adolescents with CP.

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BACKGROUND: Autism Spectrum Disorder (ASD) children have lower levels of participation in recreational and sporting activities when compared to their peers. Participation has been defined based on the Family of Participation-Related Constructs (fPRC) which defines participation as including both attendance and involvement, with sense of self, preferences and activity competence related to a child's participation. Modified sports interventions such as Sports Stars can act on physical literacy and some of the fPRCs components. This study aims to assess the feasibility of the Sports Stars Brazil intervention for children with ASD. METHODS: This study will be conducted with 36 participants with ASD aged 6 to 12 years old following the CONSORT for pilot and feasibility recommendation. Participants will be randomly allocated into two groups. Intervention group will receive eight, weekly Sports Stars sessions. Each session will include of sports-focused gross motor activity training, confidence building, sports-education and teamwork development. Study assessments will occur at baseline, immediately post-intervention and 20-weeks post-randomization. First, we will assess process feasibility measures: recruitment, assessment completion, adherence, adverse events and satisfaction. Second, we will investigate the scientific feasibility of the intervention by estimating the effect size and variance at the level of achievement sports-related activity and physical activity participation goals (Goal Attainment Scaling), activity competence (Ignite Challenge, Test of Gross Motor Development-second edition, Physical Literacy Profile Questionnaire, Pediatric Disability Assessment Inventory-Computer Adaptive Test-PEDI-CAT-mobility, 10×5 Sprint Test and Muscle Power Sprint Test), sense of self (PEDI-CAT-responsibility), and overall participation at home, school and community, (Participation and Environment Measure for children and young people, PEM-CY). DISCUSSION: The results of this feasibility study will inform which components are critical to planning and preparing a future RCT study, aiming to ensure that the RCT will be feasible, rigorous and justifiable. TRIAL REGISTRATION: The trial was registered with the Brazilian Registry of Clinical Trials database (ID: RBR-9d5kyq4) on June 15, 2022.

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Trastorno del Espectro Autista , Deportes , Humanos , Niño , Adolescente , Brasil , Trastorno del Espectro Autista/terapia , Estudios de Factibilidad , Ejercicio Físico , Ensayos Clínicos Controlados Aleatorios como Asunto

RESUMEN

Purpose: To describe the initial steps in the development of a family-completed, modified version of the Gross Motor Function Measure (GMFM-88) to report gross motor function of young people with cerebral palsy in their natural environments. Methods: Development of the Gross Motor Function - Family Report (GMF-FR) was based on expert opinion involving 13 experienced clinicians and researchers, in four steps: (1) item identification to target items that reflect functional gross motor performance; (2) item selection; (3) critical analysis of the items; and (4) item and scoring modification. Results: Several modifications to existing items and scoring were made, including wording changes to optimize ease of families' understanding, the addition of photographs to illustrate all items, changes to the items to enable use of furniture instead of specialized equipment, and modifications to scoring criteria to ensure a focus on functional motor skills. Ultimately, 30 items were selected, and specific testing/scoring instructions were created for each item. Conclusions: GMF-FR is a new family-report tool, based on the GMFM-88. When validated, it can be used as a telehealth outcome measure to capture family-reported functional motor skill performance in home and community environments.

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Objectif : décrire les premières étapes de l'élaboration d'une version modifiée de la mesure de la fonction motrice globale (GMFM-88) remplie par la famille pour rendre compte de la fonction motrice globale des jeunes ayant la paralysie cérébrale dans leur environnement naturel. Méthodologie : l'élaboration de l'outil de fonction motrice globale ­ rapport familial (GMF-FR), qui repose sur l'avis d'experts ­ soit 13 cliniciens et chercheurs d'expérience ­, s'est déclinée en quatre étapes : 1) détermination des points, pour cibler ceux qui reflète le rendement de la fonction motrice globale; 2) sélection des points; 3) analyse critique des points et 4) modifications aux points et aux scores. Résultats : les experts ont apporté plusieurs modifications aux points et aux scores en place, y compris de la reformulation pour que les familles comprennent plus facilement, l'ajout de photos pour illustrer tous les points, des changements aux points pour utiliser des meubles plutôt que du matériel spécialisé et la modification des critères des scores afin de se concentrer sur les habiletés motrices fonctionnelles. Au bout du compte, les experts ont retenu 30 points, chacun étant assorti de directives précises sur le test et le score. Conclusions : La mesure GMF-FR est un nouvel outil de déclaration par la famille, inspiré du GMFM-88. Une fois validé, il peut être utilisé comme mesure de résultats en télésanté, afin de saisir le rendement des habiletés motrices fonctionnelles à la maison et dans les environnements communautaires.

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Aims: Translate the Challenge assessment into Brazilian-Portuguese, determine its face validity, evaluate the reliability of the total score and score per item, investigate whether the child's gross motor level (classified by the Gross Motor Function Classification System-GMFCS) influences the reliability levels, and estimate responsiveness to change.Methods: The translation followed four stages: translation, synthesis, back-translation, and review. For face validity, ten physical therapists evaluated item relevance. Children and adolescents with cerebral palsy (n = 50, 5-18 years of age) GMFCS I and II were evaluated by two therapists for inter and intra-rater reliability. Thirty of these participants were recruited for the instrument's responsiveness evaluation and reassessed (n = 28) after three months of treatment. Minimal Detectable Change (MDC), and Minimal Clinically Important Difference (MCID) were estimated.Results: The back-translated version was similar to the English version. All test items were considered relevant by the physical therapists. Total score intra and inter-rater reliability were excellent for both GMFCS levels (ICC = 0.94-0.99). Items' intra- and inter- rater reliability varied from low to almost perfect (kw=-0.14-0.94). MDC90 and MDC95 values were 3.90-6.35 and 4.63-7.54, respectively. MCID values were 3.57-4.56.Conclusion: The translated version of the Challenge showed excellent face validity and reliability and was able to document longitudinal change.

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Parálisis Cerebral , Adolescente , Brasil , Niño , Humanos , Portugal , Reproducibilidad de los Resultados , Traducciones