RESEARCH PAPER Development of a tool to guide referral of patients with neuromuscular disorders to allied health services. Part two ALLAN J. PIETERSE 1,2,6 , EDITH H. C. CUP 1,3,6 , SIMONE KNUIJT 1,4,6 , REINIER AKKERMANS 8 , HENK T. HENDRICKS 5 , BAZIEL G. M. VAN ENGELEN 6 , GERT-JAN VAN DER WILT 7 & ROB A. B. OOSTENDORP 1,8 1 Research Centre for Allied Health Sciences, 2 Departments of Physical Therapy, 3 Occupational Therapy, 4 Speech and Language Therapy, 5 Rehabilitation Medicine, 6 Neuromuscular Centre Nijmegen, Institute of Neurology, 7 Department of Medical Technology Assessment (MTA) and 8 Centre for Quality of Care Research (WOK) of the Radboud University Nijmegen Medical Centre, The Netherlands Accepted April 2007 Abstract Purpose. The Perceived Limitations and Needs Questionnaire (PLAN-Q) was developed to guide referral for a one-off consultation by occupational therapy (OT), physical therapy (PT), and speech therapy (ST) consultation, to provide a tailor-made advice on allied health interventions. This article reports on the testing of validity and reliability of the PLAN-Q. Methods. In the validation study, 208 patients with a broad spectrum of neuromuscular disorders completed the PLAN-Q, Medical Outcome Study short-form 36-item version (SF-36), and the Impact of Participation on Autonomy (IPA) questionnaires. A subsection of 51 patients, whose physical condition was stable, participated in the evaluation of the intra- rater reliability of the questionnaire. The theoretical construct was tested with factorial analysis, subscales were constructed and reliability and validity of the PLAN-Q subscales were assessed. Results. Factorial analysis resulted in an 18-item self-report questionnaire. Items were grouped into four subscales (‘physical capacity’, ‘transferring’, ‘oropharyngeal capacity’, and ‘hand-use’), each with two dimensions (‘capacity’ and ‘need for help’). The internal consistency of all subscales was good (Cronbach’s a: 0.77 – 0.94) as well as the intra-rater reliability of the subscales ‘physical capacity’ and ‘transferring’ in the ‘capacity’ dimension (Kappa: 0.70 – 0.75). The ‘need’ dimension showed poor intra-rater reliability suggesting that ‘need for help’ is a variable phenomenon that changes between two points of measurement. The construct validity of the subscales against the SF-36 and the IPA was satisfactory. Conclusion. The PLAN-Q is a valid self-report instrument that measures patients’ perception of capacity and needs in domains relevant to referral for a one-off OT, PT, or ST consultation. Keywords: Neuromuscular diseases, needs assessment, referral and consultation, questionnaire Introduction In the early stages of the disease patients with slowly progressive, chronic neuromuscular disorders (NMD) usually have mild functional limitations [1 – 3] and reasons for referral to Occupational Therapy (OT), Physical Therapy (PT) and Speech Therapy (ST) are often unclear. Therefore, we introduced a system of one-off consultations [4] to improve the distribution of care given by OT, PT and ST. In the preceding paper we presented the first stages of the development of the Perceived Limita- tions and Needs questionnaire (PLAN-Q) [5]. The PLAN-Q is a screening instrument to guide referral of patients with neuromuscular disorders (NMD) for one-off consultations by OT, PT and ST. These one-off consultations result in an advice to patient and neurologist on the appropriate management of OT, PT and ST care. To develop the PLAN-Q we followed the meth- odical framework of Kirshner and Guyatt [6]. According to this framework the stages of item Correspondence: Mr Allan J. Pieterse, Radboud University Nijmegen Medical Centre, Department of Physical Therapy (code 897), PO Box 9101, 6500 HB Nijmegen, The Netherlands. Tel: þ31243614883. Fax: þ31243619839. E-mail: a.pieterse@pmd.umcn.nl Disability and Rehabilitation, 2008; 30(11): 863 – 870 ISSN 0963-8288 print/ISSN 1464-5165 online ª 2008 Informa UK Ltd. DOI: 10.1080/09638280701403460 Disabil Rehabil Downloaded from informahealthcare.com by Radboud Universiteit Nijmegen on 12/20/12 For personal use only.