Broadening the scope on health problems among the chronically neurologically ill with the International...

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.

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).

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.

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'.