Electric powered wheelchairs for those with muscular dystrophy: problems of posture, pain and deformity.
ABSTRACT 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.
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.
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).
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.
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ABSTRACT: AimThe aim of this study was to critically synthesize qualitative evidence regarding the child and family experience of power mobility, and to examine how this evidence fits with current theoretical concepts.Method Electronic database/hand searches were undertaken in September 2012 and updated in February 2014. The searches were restricted to qualitative studies published in English before February 2014 that included at least one child under the age of 19 with a disability and described an outcome related to the use of power mobility. Inclusion criteria were set a priori. Two reviewers independently screened titles, abstracts, and full-text articles and extracted data. McMaster qualitative review forms were used for quality appraisal.ResultsOf 259 titles, 21 met inclusion criteria. From 143 codes, 15 second-order themes were developed using constant comparison and analysis. Three overarching themes emerged: power mobility experience promotes developmental change and independent mobility; power mobility enhances social relationships and engagement in meaningful life experiences; and power mobility access and use is influenced by factors in the physical, social, and attitudinal environment.InterpretationThis qualitative research provides rich and rigorous evidence supporting the benefits of power mobility for children and families. Numerous factors, which warrant careful consideration, influence power mobility access and use.Developmental Medicine & Child Neurology 11/2014; 57(4). DOI:10.1111/dmcn.12633 · 3.29 Impact Factor
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ABSTRACT: The aim of the study was to support clinicians in recommending and justifying power mobility for children of different ages and abilities, and with different needs. The study comprised three distinct parts: a literature review; a Delphi consensus; and clinical practice considerations. A scoping review of eight electronic databases and manual searches carried out in February 2011 identified 15 themes or transferable messages among 27 articles meeting initial inclusion criteria and these formed the basis of a draft paper. Informal consensus at two international conference presentations refined and modified the paper to include 10 messages supported by 24 articles. The literature review was updated in May 2012 and a modified Delphi process sought to formalize the consensus process with an international panel of 16 expert clinicians and researchers using a priori criteria of 80% agreement. Evidence from studies was classified using the American Academy of Cerebral Palsy and Developmental Medicine guidelines, with evidence from most studies being classified as either level IV or level V, apart from one study each with evidence classified as level II and level III. Expert consensus on the content and wording of nine transferable messages may raise evidence overall to level III. This paper suggests that power mobility may reasonably be considered as an effective and appropriate intervention for children lacking efficient, independent mobility from around 12 months of age including children who may never become competent drivers and children lacking independent mobility only in early childhood.Developmental Medicine & Child Neurology 09/2013; 56(3). DOI:10.1111/dmcn.12245 · 3.29 Impact Factor
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ABSTRACT: To describe the characteristics, across all ages, of powered wheelchair users and the assistive technology prescribed by a regional specialist wheelchair service DESIGN: Cross-sectional study SETTING: Regional wheelchair service provided to those fulfilling strict eligibility criteria by a National Health Service serving a population of 3 million. 544 Electric Powered Indoor/outdoor wheelchair (EPIOC) users. Not applicable MAIN OUTCOME MEASURES: Demographic, clinical/diagnostic details of EPIOC recipients including pain, (kypho)scoliosis and ventilators. Technical features including specialised (adaptive) seating (SS), tilt in space (TIS), and modified control systems. Factors were related to age groups: 1 (0-15), 2 (16-24), 3 (25-54), 4 (55-74) and 5 (75+). 262 men mean age 41.7 (range 8-82, sd 20.7) and 282 women mean age 47.2 (range 7-92, sd 19.7) years were studied. Neurological/neuromuscular conditions predominated (81%) with cerebral palsy (CP) (18.9%) and multiple sclerosis (16.4%). Conditions presenting at birth or during childhood constituted 39%. 99 had problematic pain, 83 a (kypho)scoliosis and 11 used ventilators. SS was provided to 169 users (31%), the majority had CP or muscular dystrophy. TIS was used by 258 (53%). Younger people were more likely to receive TIS than older ones. Only 92 had SS and TIS, mean age 29 (range 8-72, sd 17.8) years. 52 used modified control systems. The diversity of EPIOC users across age and diagnostic groups is shown. Their complex interrelationships with these technical features of EPIOC prescription are explored. Younger users were more complex due to age-related changes. This study provides outcomes of the EPIOC prescription for this heterogeneous group of very severely disabled people.Archives of physical medicine and rehabilitation 07/2013; DOI:10.1016/j.apmr.2013.07.010 · 2.44 Impact Factor