Authors (including presenting author) :
Ng PH(1), Kwong ST(1), Lam PL(1), Tsang PLC(1), Gao Y(2), Pang SYY(2)
Affiliation :
(1) Physiotherapy Department, Queen Mary Hospital
(2) Division of Neurology, Department of Medicine, Queen Mary Hospital
Introduction :
Spinal muscular atrophy (SMA) is a genetic neuromuscular disorder characterized by progressive muscle atrophy. The advent of disease-modifying medications is life-changing for many SMA patients. Risdiplam, an oral medication, has been available under Hospital Authority since 2021. The Division of Neurology at Queen Mary Hospital (QMH) has been designated as the centre for Risdiplam administration to adult SMA patients, with the support from Community Care Fund. With service inauguration, the department of physiotherapy seamlessly assembled a devoted team to provide reliable assessments, which are crucial in monitoring patients’ motor function.
Objectives :
(1) To develop a physiotherapy service model for adult SMA patients
(2) To engage and train physiotherapists in delivering standardized motor assessments for adult SMA patients
Methodology :
Literature review on physiotherapy for adult SMA patients was conducted, and existing pediatric service model was taken as reference. Validated assessment tools were identified, and discussions were held with neurologists. Training materials were procured from tool developers. Through communication with developers, in-house training and attachment to staff who had experience with pediatric SMA patients, a team of physiotherapist was trained to provide standardized assessment for adult SMA patients.
Result & Outcome :
Six validated assessment tools were adopted, namely 32-item Motor Function Measure, Adult Test of Neuromuscular Disorder, Hammersmith Functional Motor Scale Expanded, Revised Upper Limb Module, contracture assessment and 6-minute walk test. After comprehensive training, a team of 13 physiotherapists were engaged. From November 2021, 22 patients had been screened, 21 of them commenced on Risdiplam. Assessment tools were selected on a case-to-case basis, considering the diverse patient spectrum. By 15th December 2024, 1-year and 2-year reassessment had been completed with 17 and 7 patients respectively. Re-assessment scores obtained remained consistent, indicating stable motor function along with medication. Moreover, it was not uncommon for patients to report subjective improvements in muscle endurance and tolerance. Along with 2 cases transitioned from pediatrics service, 17 patients are now receiving comprehensive care from our devoted physiotherapy team.
