A U.S. survey of patients with Parkinson's disease: satisfaction with medical care and support groups

Abstract

Relatively little is known about patient satisfaction with Parkinson's disease (PD) care and the use of support groups in the United States. We surveyed members of the Muhammad Ali Parkinson's Disease Registry to assess satisfaction with medical care and to evaluate support group use. Satisfaction was measured on a 5-point Likert scale, with high satisfaction defined as a four or five. We used multiple logistic regression to identify factors associated with high satisfaction and support group use. The response rate was 38% (726 of 1923). Most (57%) expressed high satisfaction with PD care. Individuals were most satisfied with the time their provider spent with them (61%) and PD education (56%) but least satisfied with prognostic information (35%) and information about non-drug interventions (28%). Patients seeing a PD specialist were three times more satisfied with their care than those seeing a general neurologist (OR = 3.00, 95% CI: 1.92-4.71; P < 0.0001). Support group use is common, and 61% of survey respondents had attended one at any point. Caucasian race (OR = 2.85, 95% CI: 1.45-5.61), PD duration (OR = 1.05 per year, CI: 1.01-1.10), and PD specialist care (OR = 1.80, CI: 1.16-2.77) were associated with greater support group attendance. Overall, 49% reported high satisfaction with their support group. The greatest concerns were specific needs not being addressed (15%) and insufficient expertise within the group (14%). Most individuals with Parkinson's disease expressed high levels of satisfaction, especially with specialist care. Specialty care and improved education, in the clinic or through support groups, may enhance satisfaction and health care quality.