An assessment of the spectrum of disability and handicap in multiple sclerosis: a population-based study

Objectives: To establish the spectrum of disability and handicap in a population based sample of multiple sclerosis (MS) patients. Background: Much knowledge exists about the epidemiology of MS but, despite its importance for health and social service planning there remains relatively little data on the extent and nature of disability and handicap in this population. Methods: In a prevalence study in the north-east of N. Ireland, 288 patients (Poser criteria) were identified. Disability and handicap were assessed using the Incapacity Status Scale and Environmental Status Scale of the Minimal Record of Disability for MS. Results: Both scales were completed for 248 (86%) of patients. Just 71 (29%) are fully independent in all basic ADL's of bathing, dressing grooming and feeding. Fifty-seven (23%) are unable to climb a flight of stairs and 102 (42%) acknowledge problems with sexual function. Sixty-one (25%) were working essentially full-time and 53 (21%) had no external financial support. Forty-five (18%) had changed residence due to MS, 12 (5%) were institutionalised and 86 (35%) required assistance for at least 1 h/day with ADL's. Eighty-one (33%) were unable to drive a car or use public transport. Forty-two (17%) access community services for at least 1 h/day on average. Conclusions: This data gives a clear indication of the considerable range of basic health and social issues in a typical MS community. Further work is required to establish patient perceptions of the adequacy of care provision and whether standards of care for MS patients are being met.