APH 1997, 55, 239-259:

Costs of professional care and informal help of severely disabled multiple sclerosis patients in Flanders (Belgium).

H. Carton, R. Loos, J. Pacolet, K. Versieck, and R. Vlietinck

Keywords: multiple sclerosis, severe disability, health care cost

Purpose. To estimate health care utilization by the severely disabled MS patients in Flanders, to calculate the costs of professional care and to assess the importance of informal help.

Procedure. The combined methodology of a retrospective questionnaire and a prospective diary was used to collect individual data on health care utilization from 184 MS patients with different grades of disability (0-9 on the KDSS). Invoices of the patients hospitalised during the study period were collected.

A spot survey of a representative MS populations was performed to obtain an estimate of the proportion of patients still living at home, in sheltered housing, or permanently institutionalised in an SPN-institute or nursing home.

Results and conclusion. lt is estimated that 18 % of the about 5 500 Flemish MS patients in Flanders are severely disabled (KDSS 8 and 9). Sixty-four percent still resides at home or in sheltered housing. They spend each year an average of 45 days in hospital. Their medical cost for outpatient and inpatient care is estimated to be 805 000 BEF per year.  Cost for social assistance house adaptations and purchase of prosthetics was 117 000 BEF for patients at home and 897 000 BEF for patients in sheltered housing. The time spent by informal helpers giving care to patients residing home amounted to 8.3 hours per day.  Thirty-six percent of the severely disabled patients are permanently institutionalized.  The yearly direct health care costs for a patiŽnt in an SPN-institute was 1 918 000 BEF.  For a patient in a nursing home it was 1 030 000 BEF.