ABSTRACT
PURPOSE: To describe the clinical features of electric powered indoor/outdoor wheelchair users with a muscular dystrophy, likely to influence optimal prescription; reflecting features of muscular dystrophies, conditions secondary to disability, and comorbidities impacting on equipment provision. METHODS: Cross-sectional retrospective case note review of recipients of electric powered indoor/outdoor wheelchairs provided by a specialist regional wheelchair service. Data on demography, diagnostic/clinical, and wheelchair prescription were systematically extracted. RESULTS: Fifty-one men and 14 women, mean age 23.7 (range 10-67, s.d. 12.95) years, were studied. Forty had Duchenne muscular dystrophy, 22 had other forms of muscular dystrophy, and three were unclassified. Twenty-seven were aged under 19. Notable clinical features included problematic pain (10), cardiomyopathy (5), and ventilatory failure (4). Features related to disability were (kypho)scoliosis (20) and edema/cellulitis (3) whilst comorbidities included back pain (5). Comparison of younger with older users revealed younger users had more features of muscular dystrophy affecting electric powered chair provision (56%) whilst older users had more comorbidity (37%). Tilt-in-space was prescribed for 81% of users, specialized seating for 55% and complex controls for 16%. CONCLUSIONS: Muscular dystrophy users were prescribed electric powered indoor/outdoor chairs with many additional features reflecting the consequences of profound muscle weakness. In addition to facilitating independence and participation, electric powered indoor/outdoor chairs have major therapeutic benefits. Implications for rehabilitation Powered wheelchairs have therapeutic benefits in managing muscular dystrophy pain and weakness. The use of specialized seating needs careful consideration in supporting progressive muscle weakness and the management of scoliosis. Pain, discomfort, pressure risk, and muscle fatigue may be reduced by use of tilt-in-space.
Subject(s)
Disabled Children , Disabled Persons , Muscular Dystrophies , Wheelchairs , Adolescent , Adult , Age Factors , Aged , Child , Cross-Sectional Studies , Disability Evaluation , Disabled Children/psychology , Disabled Children/rehabilitation , Disabled Persons/psychology , Disabled Persons/rehabilitation , Equipment Design , Female , Humans , Male , Muscular Dystrophies/diagnosis , Muscular Dystrophies/psychology , Muscular Dystrophies/rehabilitation , Pain Management/methods , Retrospective Studies , Wheelchairs/classification , Wheelchairs/standardsABSTRACT
PURPOSE: The emotional distress caused by pain is one of the most disruptive aspects of living with the condition. This study investigates how individuals experience pain and its consequences for family life and work. METHOD: Unstructured interviews, using the 'Framework' approach with topic guide, were recorded and transcribed. Patients were sampled for age, sex, ethnicity and occupation from new referrals with spinal pain (SP) to a rheumatology outpatient clinic. Eleven patients (five males and six females) were interviewed in English (n = 9) or their preferred language (n = 2). Interviews were read in depth twice to identify the topics. Data were extracted in phrases and sentences using thematic content analysis. RESULTS: Emergent themes reported were relationships with: spouses and partners (n = 7), children/parents (n = 6), with other family and friends (n = 7) and work-related issues (n = 11). Patients valued support from family but expressed concerns about causing them worry. Work-related issues included physical and emotional efforts to keep working when in pain, fear of losing employment and financial problems. CONCLUSION: Patients expressed anxiety about how their pain affected other family members, regret at losing full work capacity and worry about financial consequences. The lived experience of chronic SP has ramifications that go beyond the individual, reaching into work and social relationships.
