To explore and to describe the use of health, social, and informal care services and satisfaction with care in a population-based sample of people with multiple sclerosis (PwMS) in Stockholm County.
Methods
The sample consisted of 166 PwMS who participated in the Stockholm MS study. Data on the use of health care services and satisfaction with care and services in PwMS were collected through a computerized register and through home visits to PwMS using structured, face-to-face interviews.
Results
During the study period of 3 years, 92% had been in contact with out-patient departments of Neurology, and 76% had been in contact with other hospital out-patient departments. Some 83% were in contact with primary care, and primary care contacts constituted 54% of all out-patient care. One third of the PwMS (32%) used home help service (17%) or personal assistants (19%), and higher proportions used informal help from partners (37%). PwMS were in general satisfied with the care received, with the exception of access to coordinated rehabilitation and psychosocial counseling. The proportion of PwMS using inpatient, outpatient, and social/informal (excluding neurological) care increased with the degree of disease severity.
Conclusions
The great majority of PwMS use hospital specialist care and primary care in parallel, with many departments and services involved. Better accessibility of certain services, for example, psychosocial counseling and rehabilitation, and other improvements, for example efforts to provide coordinated and comprehensive care for PwMS may increase satisfaction with care and should be the focus of scientific evaluation.
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