Broadening the scope on health problems among the chronically neurologically ill with the International Classification of Functioning (ICF)

Purpose. The aim of this study was to determine ICF items indicating health problems for patients with a chronic neurological disorder such as multiple sclerosis, Parkinson's disease and neuromuscular disease. Method. A Delphi study using three disease-specific panels composed of patients and proxies, medical and non-medical health professionals (N=98). Panels were asked to select items from the International Classification of Functioning, Disability and Health (ICF) reflecting relevant disease-specific health problems. Items appraised as relevant by the panel members were compared with items in established measures namely: the Minimal Record of Disability (MRD) and the Disability and Impact Profile (DIP). Results. Sixty-eight ICF items were considered to be the most relevant, and belonged to four ICF domains. No significant differences were found between the appraisal of items by patients/proxies and health professionals. Agreement across the disease panels appeared to be (very) strong. Differences between the three disease-specific panels were found for the 'Body Functions and Structures' domain: consensus was reached by extension of the inclusion criteria. The ICF-item selection covers almost all items of the established measures. The largest contrast was shown in the item selection for the 'participation' and 'environmental factors' domains. Conclusions. Selected items indicate a broader scope in studying health problems compared with widely used health status measures in neurology, especially for the ICF domains 'Participation' and 'Environmental Factors'