title: Multiple sclerosis in Stockholm County. A pilot study of utilization of health-care resources, patient satisfaction with care and impact on family caregivers.
abstract: Multiple sclerosis (MS) is a progressive, incurable neurological disease with a large impact on the person/people with MS (PwMS), the family of the PwMS, medical resources and the community. We have explored the feasibility of calculating utilization of health-care resources within Stockholm County and evaluated methods for interviewing PwMS and family caregivers in their homes. Home visits were made to 26 PwMS with different levels of disability, both in ordinary and sheltered living. Questionnaires assessing patient satisfaction, the use of technical aids and home adaptations, help from municipal and family caregivers, and health-related quality of life were administered in the form of structured interviews. Utilization of health-care resources was evaluated with the help of an available computerized register. The study shows that the chosen methods are feasible for PwMS, irrespective of level of disability or form of living. They are well accepted by both PwMS and family caregivers and need only minor modifications in order to be suitable for a population-based study.
authors.affiliation: Unit of Neuroepidemiology and Health Services Research, Division of Neurology, Neurotec Department, Karolinska Institutet, Stockholm, Sweden. kristina.gottberg@neurotec.ki.se
authors.forename: K
authors.initials: K
authors.lastname: Gottberg
authors.forename: U
authors.initials: U
authors.lastname: Einarsson
authors.forename: S
authors.initials: S
authors.lastname: Fredrikson
authors.forename: L
authors.initials: L
authors.lastname: von Koch
authors.forename: L Widén
authors.initials: LW
authors.lastname: Holmqvist
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000706:statistics & numerical data*; D003695:Delivery of Health Care / Q000706:statistics & numerical data*; D005240:Feasibility Studies; D005260:Female; D019538:Health Care Surveys / Q000379:methods* / Q000706:statistics & numerical data; D006295:Health Resources / Q000706:statistics & numerical data*; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000453:epidemiology* / Q000628:therapy*; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D010865:Pilot Projects; D011788:Quality of Life; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D012922:Social Change; D013548:Sweden / Q000453:epidemiology