Robert F Pangalila

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PURPOSE To describe subjective caregiver burden of parents of adults with Duchenne muscular dystrophy (DMD) and to identify factors associated with the level of subjective burden. METHODS In a cross-sectional study in 80 parents of 57 adult, severely disabled DMD patients' level of subjective caregiver burden was measured with the Caregiver Strain Index(More)
OBJECTIVE To determine upper limb function and associated factors in adults with Duchenne muscular dystrophy. DESIGN Cross-sectional study. SUBJECTS A sample of 70 men with Duchenne muscular dystrophy (age range 20-43 years). METHODS General motor function and, in particular, upper limb distal motor function, were assessed with the Motor Function(More)
OBJECTIVES To assess the prevalence of fatigue, pain, anxiety, and depression in adults with Duchenne muscular dystrophy (DMD), and to analyze their relationship with health-related quality of life. DESIGN Cross-sectional study. SETTING Home of participants. PARTICIPANTS Adults (N=80) with DMD. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES(More)
BACKGROUND Duchenne muscular dystrophy (DMD) is a progressive muscle disease. No curative therapy is currently available, but in recent decades standards of care have improved. These improvements include the use of corticosteroids and mechanical ventilation. OBJECTIVE To present a detailed population based report of the DMD disease course in The(More)
OBJECTIVE To assess quality of life of adults with Duchenne muscular dystrophy in the Netherlands and to identify domains and major problems influencing quality of life. DESIGN Cross-sectional. SUBJECTS Seventy-nine men aged ≥ 20 years with Duchenne muscular dystrophy. METHODS The Medical Outcome Study Short Form-36 (SF-36), World Health Organization(More)
OBJECTIVE Despite the widespread use of botulinum toxin in ambulatory children with spastic cerebral palsy, its value prior to intensive physiotherapy with adjunctive casting/orthoses remains unclear. DESIGN A pragmatically designed, multi-centre trial, comparing the effectiveness of botulinum toxin + intensive physiotherapy with intensive physiotherapy(More)
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