Responsiveness of the domain climbing up and going down stairs of the Functional Evaluation scale for Duchenne Muscular Dystrophy: a one-year follow-up

ABSTRACT Objective: To determine the responsiveness of the domain climbing up and going down stairs of the Functional Evaluation Scale for Duchenne Muscular Dystrophy (FES-DMD-D3) in a one-year follow-up study. Method: The study included 26 patients with DMD. Effect Size (ES) and Standardized Response Mean (SRM) described the scale’s responsiveness. Results: For climbing up stairs, ES showed that responsiveness was low in the three-month assessments (0.26; 0.35; 0.13; 0.17), low to moderate in the six-month assessments (0.58; 0.48; 0.33), moderate in the nine-month assessments (0.70; 0.68), and high in the 12-month assessment (0.88). SRM showed that responsiveness was low in the three-month assessments (0.29; 0.38; 0.18; and 0.19), low to moderate in the six-month assessments (0.59; 0.51; 0.36), moderate in the nine-month assessments (0.74 and 0.70), and high in the 12-month assessment (0.89). For going down stairs, ES showed that responsiveness was low in the three- and six-month assessments (0.16; 0.25; 0.09; 0.08 and 0.48; 0.35; 0.18, respectively), low to moderate in the nine-month assessments (0.59; 0.44), and moderate in the 12-month assessment (0.71). SRM showed that responsiveness was low in the three- and six-month assessments (0.25; 0.35; 0.12; 0.09 and 0.47; 0.38; 0.21, respectively), low to moderate in the nine-month assessment (0.62; 0.49), and moderate in the 12-month assessment (0.74). Conclusion: Climbing up stairs should be assessed at intervals of nine months or longer, when responsiveness is moderate to high. Going down stairs should be assessed annually because moderate responsiveness was observed in this period.

Verificação das habilidades funcionais e necessidades de auxílio do cuidador em crianças com paralisia cerebral nos primeiros meses de vida / Verification of the functional abilities and assistance needs of children with cerebral palsy

INTRODUÇÃO: Paralisia Cerebral é uma desordem do movimento e da postura, persistente, porém variável, surgida nos primeiros anos de vida pela interferência no desenvolvimento do sistema nervoso central, causada por uma desordem cerebral não progressiva ¹. Tem como principal característica a inabilidade do corpo em enfrentar com eficiência os efeitos da gravidade. Devido às alterações motoras é importante a participação do Fisioterapeuta na equipe interdisciplinar. Para tanto, deve-se realizar avaliações das dificuldades na paralisia cerebral para possibilitar uma melhor organização do programa fisioterapêutico. OBJETIVO: Avaliar as habilidades funcionais e a necessidade de auxílio do cuidador em crianças com até 18 meses de idade, e com paralisia cerebral. Método: Foram avaliadas 7 crianças com diagnóstico médico de paralisia cerebral, entre 10 e 18 meses de idade, com média de idade correspondente a um ano e dois meses. A avaliação ocorreu por meio do P.E.D.I. e foram analisados os escores bruto e normativo nas áreas de habilidades funcionais e assistência do cuidador. RESULTADOS: Verificou-se maior dificuldade nas crianças com paralisia cerebral na área de mobilidade e, desta forma, a necessidade de maior assistência em movimentos e posturas. CONCLUSÃO: Apesar das alterações nos componentes neuromotores observadas em crianças de risco, as mesmas acabam desenvolvendo estratégias motoras que lhes permitem desempenhar atividades funcionais, como por exemplo as situações citadas na área de auto-cuidado. Os cuidadores orientados pelo fisioterapeuta podem propor facilitações que beneficiarão a função da criança, sua participação na atividade e desenvolvimento da comunicação.

INTRODUCTION: Cerebral Palsy is a movement and posture disorder caused by events occurring during pregnancy, childbirth, the neonatal period or during the first two years of life. Its main characteristic is the body's inability to efficiently face the effects of gravity. Due to the motor alterations, the participation of the physiotherapist in the interdisciplinary team is important. Assessment of the difficulties in cerebral palsy should take place to enable a better organization of the physiotherapeutic program. OBJETIVE: To analyze the constraints on the functional abilities and the assistance needs of children with cerebral palsy up to 18 months of age. METHODS: Seven children with a medical diagnosis of cerebral palsy, with ages between 10 and 18 months, mean age corresponding to one year and two months, were assessed. The assessment occurred by means of P.E.D.I. and the gross and normative scores in the areas of functional abilities and caregiver's assistance were analyzed. Results: The mobility area was the one in which the children with cerebral palsy had more difficulties; thus, they needed more assistance in movements and postures. CONCLUSION: In spite of the alterations in the neuromotor components observed in risk children, the same children end up developing motor strategies that allow them to perform functional activities; for example, the situations cited in the self-care area. The caregivers, guided by the physiotherapist, can propose the means that will benefit the child's function, his/her participation in the activity and communication development.