Development of a tool to guide referral of patients with neuromuscular disorders to allied health services. Part one.
until further notice
SourceDisability and Rehabilitation, 30, 11, (2008), pp. 855-862
Article / Letter to editor
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Epidemiology, Biostatistics & HTA
Centre for Quality of Care Research
Disability and Rehabilitation
SubjectDCN 1: Perception and Action; DCN 2: Functional Neurogenomics; EBP 2: Effective Hospital Care; EBP 4: Quality of Care; NCEBP 10: Human Movement & Fatigue; NCEBP 2: Evaluation of complex medical interventions; NCEBP 6:Quality of nursing and allied health care; UMCN 3.1: Neuromuscular development and genetic disorders; UMCN 3.2 Cognitive Neurosciences; EBP 2: Effective Hospital Care; NCEBP 10: Human Movement & Fatigue
PURPOSE: Reasons for referral of patients with chronic, slowly progressive neuromuscular disorders (NMD) to occupational therapy (OT), physical therapy (PT) and speech therapy (ST) are often unclear. One-off consultations by OT, PT and ST can help patients and physicians to decide if therapy is needed. We present a construct for a questionnaire, the Perceived Limitations in Activities and Needs Questionnaire (PLAN-Q). Its aim is to signal problems and needs of patients with chronic, slowly progressive NMD with a view to referral for one-off consultations by OT, PT and ST. We report on the construct, item pool, response options and the item reduction procedure as the first development stages for the PLAN-Q. METHODS: The International Classification of Functioning, Disability and Health (ICF) served as source for items and response options. Five clinical health professionals of the Neuromuscular Center Nijmegen (NMCN) formed an expert panel. They were asked to reach consensus on construct, item pool and response options. Subsequently a sample of patients with NMD (n=21) that attended the NMCN was asked for their approval of the concept questionnaire. Data of a large cohort (n=208) of patients with a broad variety of chronic NMD were used to carry out item reduction. RESULTS: The expert panel reached consensus on the selection of 56 items covering eight activity categories relevant to OT, PT, and ST. They also reached consensus on response options regarding 'capacity' and 'need for therapy or advice'. The patient sample approved the concept PLAN-Q. The item reduction procedure resulted in a reduction to 25 items covering eight activity categories. CONCLUSION: The PLAN-Q has proceeded through the first stages of development and is now ready for further assessment of reliability and validity.
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