Marion Richardson1, Andrew O Frank. 1. Stanmore Specialist Wheelchair Service, Royal National Orthopedic Hospital, Brockley Hill, Stanmore, UK.
Abstract
PURPOSE: To identify areas of difficulty encountered by a regional wheelchair service in providing Electric Powered Indoor/outdoor wheelchairs (EPIOCs) to those with muscular dystrophy (MD) in the early years of their provision--particularly posture, pain and deformity. METHOD: Wheelchair service records of all users between April 1997 and March 2000 were reviewed retrospectively and issues relating to weakness, pain/discomfort, deformities, other medical issues, weight change, function, posture and driving were documented on a purpose-designed proforma. Adjustments and modifications were documented over the 2-year period following chair delivery. RESULTS: Of 325 EPIOC users on the departmental database, 29 had MD (15 Duchenne's), whose users charts were reviewed. Almost 80% of users needed clinical review within 2 years, mostly due to a scoliosis. Other problems were postural (66%), medical (48%), pain (31%), functional (24%) and weight change (14%). The commonest prescriptions were for specialised seating (24%), lateral supports, headrests and footrests (21% each). CONCLUSIONS: The rate of disease progression was not planned for by the service. Most clients were seen in response to deterioration, rather than anticipating it. Planned reviews within 1 year appear essential for teenagers with MD with the dual issues of rapid maturation and progressive disease.
PURPOSE: To identify areas of difficulty encountered by a regional wheelchair service in providing Electric Powered Indoor/outdoor wheelchairs (EPIOCs) to those with muscular dystrophy (MD) in the early years of their provision--particularly posture, pain and deformity. METHOD: Wheelchair service records of all users between April 1997 and March 2000 were reviewed retrospectively and issues relating to weakness, pain/discomfort, deformities, other medical issues, weight change, function, posture and driving were documented on a purpose-designed proforma. Adjustments and modifications were documented over the 2-year period following chair delivery. RESULTS: Of 325 EPIOC users on the departmental database, 29 had MD (15 Duchenne's), whose users charts were reviewed. Almost 80% of users needed clinical review within 2 years, mostly due to a scoliosis. Other problems were postural (66%), medical (48%), pain (31%), functional (24%) and weight change (14%). The commonest prescriptions were for specialised seating (24%), lateral supports, headrests and footrests (21% each). CONCLUSIONS: The rate of disease progression was not planned for by the service. Most clients were seen in response to deterioration, rather than anticipating it. Planned reviews within 1 year appear essential for teenagers with MD with the dual issues of rapid maturation and progressive disease.
Authors: Ching H Wang; Carsten G Bonnemann; Anne Rutkowski; Thomas Sejersen; Jonathan Bellini; Vanessa Battista; Julaine M Florence; Ulrike Schara; Pamela M Schuler; Karim Wahbi; Annie Aloysius; Robert O Bash; Christophe Béroud; Enrico Bertini; Kate Bushby; Ronald D Cohn; Anne M Connolly; Nicolas Deconinck; Isabelle Desguerre; Michelle Eagle; Brigitte Estournet-Mathiaud; Ana Ferreiro; Albert Fujak; Nathalie Goemans; Susan T Iannaccone; Patricia Jouinot; Marion Main; Paola Melacini; Wolfgang Mueller-Felber; Francesco Muntoni; Leslie L Nelson; Jes Rahbek; Susana Quijano-Roy; Caroline Sewry; Kari Storhaug; Anita Simonds; Brian Tseng; Jiri Vajsar; Andrea Vianello; Reinhard Zeller Journal: J Child Neurol Date: 2010-11-15 Impact factor: 1.987
Authors: Matthew F Jacques; Rachel C Stockley; Emma I Bostock; Jonathon Smith; Christian G DeGoede; Christopher I Morse Journal: PLoS One Date: 2019-02-14 Impact factor: 3.240