title: Access to health care for people with multiple sclerosis.
abstract: The Sonya Slifka Longitudinal Multiple Sclerosis (MS) Study follows a population-based cohort of approximately 2000 people with MS to study demographic and clinical characteristics, use and cost of health services, provider and treatment characteristics, neurological, economic, and psychosocial outcomes. We examined key indicators of access to health care and found that the majority of participants had health insurance, a usual source of care, and access to specialty care. Nevertheless, 3.8% did not have health insurance which, with application of sampling weights, corresponds to approximately 7000 people with MS in the US population. Even with insurance, population-based estimates indicated that substantial numbers of people with MS have plans that pay nothing toward prescription medication, limit their access to specialists, and restrict their choice of hospitals and providers. Some 9% of the sample, corresponding to 15,800 people with MS, did not have a usual source of MS care; 11.8% or 17,300 people did not have a usual source of general health care; and 31% or 57,400 people did not see the specialists that they or their physicians wanted them to see. Further, 10.5% or 19,400 people reported difficulty obtaining prescription medication, 4.1% or 7600 people encountered obstacles accessing medical care, and 2.4% or 4500 people could not obtain the mental health services they needed. Finally, out-of-pocket health care expenditures were twice those found for the general population. Two-thirds of study participants (representing almost 70,000 people) chose their MS care providers because they were neurologists or MS specialists, creating a demand that almost certainly exceeds current supply.
authors.affiliation: Department of Psychiatry, Brigham and Women's Hospital, Boston, MA 02115, USA. sarah_minden@abtassoc.com
authors.forename: S L
authors.initials: SL
authors.lastname: Minden
authors.forename: D
authors.initials: D
authors.lastname: Frankel
authors.forename: L
authors.initials: L
authors.lastname: Hadden
authors.forename: D C
authors.initials: DC
authors.lastname: Hoaglin
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D015331:Cohort Studies; D016208:Databases, Factual / Q000706:statistics & numerical data; D003710:Demography; D004522:Educational Status; D004651:Employment; D005006:Ethnicity; D005260:Female; D006801:Humans; D007182:Income; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000628:therapy*; D010342:Patient Acceptance of Health Care / Q000523:psychology / Q000706:statistics & numerical data*; D044469:Racial Groups; D014481:United States