Jozef Pacolet

Utilisation and cost of professional care and assistance according to disability of patients with multiple sclerosis in Flanders (Belgium)

OBJECTIVES To assess the utilisation of medical services and social (community) assistance in patients with multiple sclerosis of different disability and to calculate the direct healthcare costs to society. METHODS (1) One hundred and eighty four patients with multiple sclerosis were classified into four grades of disability according to a simplified Kurzke disability status scale. (2) Patients were interviewed with a structured questionnaire containing questions on their sociodemographic status, the use of inpatient and outpatient medical services and pharmaceutical products during the previous year, the use of social assistance, and the purchase of prosthetics and charges for house adaptations during the previous five years. (3) Data were also prospectively collected by means of four week diary annotations of all medical and social acts and their duration. RESULTS After correction for the disability distribution the yearly costs for the 5500 patients with multiple sclerosis in Flanders was estimated to be ECU 13u2009106u2009000 for ambulatory care including rehabilitation and district nursing and ECU 3u2009234u2009000 for pharmaceutical products. To these direct medical costs ECU 3u2009491u2009000 for social assistance and ECU 4u2009938u2009000 for prosthetics and adaptations should be added. The yearly costs for admissions to hospital including permanent residence in an institution and pharmacy was ECU 26u2009581 000u2009. Home nursing and long term or permanent residence in an institution of the most severely disabled, 17% of the multiple sclerosis population, are responsible for 50% of the total direct healthcare costs and care for the 6.5% institutionalised patients accounts for 23%. Direct costs for medical care and social assistance for patients with multiple sclerosis, who account for about 0.1 % of the total population, amounts to 1% of the total healthcare budget in Flanders. CONCLUSION This information on utilisation of medical services and social assistance can be used for good healthcare planning and cost effectiveness studies.

A quantitative study of unpaid caregiving in multiple sclerosis

Data on healthcare utilisation by MS patients of different grades of disability were collected using the method of a prospective diary. Professional care providers and unpaid caregivers noted during 4 weeks the time they spent and the types of support they provided. The total homecaring time of family and friends amounted to 4.6 and 12 h per day for the moderately and the severely disabled MS patients respectively. The time for unpaid core activities such as mobility help, nursing care and personal care of moderately and severely disabled patients amounted to 0.5 and 2 h per day, exceeding the time for professional medical and paramedical care at home. Eighty per cent of informal homecaring is provided by persons living with the patients, primarily the partner, who provides 60% of homecaring time. Severely disturbed bowel function and absence of a partner were associated with permanent institutionalisation.