Development of a tool to guide referral of patients with neuromuscular disorders to allied health services. Part one.
OBJECTIVE
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.


CONCLUSIONS
The PLAN-Q has proceeded through the first stages of development and is now ready for further assessment of reliability and validity.
Pieterse
Allan J
AJ
Research Centre for Allied Health Sciences, The Netherlands. a.pieterse@pmd.umcn.nl
Cup
Edith H C
EH
Knuijt
Simone
S
Hendricks
Henk T
HT
van Engelen
Baziel G M
BG
van der Wilt
Gert-Jan
GJ
Oostendorp
Rob A B
RA
D000328:Adult; D000368:Aged; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009468:Neuromuscular Diseases / Q000534:rehabilitation*; D009788:Occupational Therapy / Q000706:statistics & numerical data; D026741:Physical Therapy Modalities / Q000706:statistics & numerical data; D012017:Referral and Consultation; D013070:Speech Therapy / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires