15 October 2010
Dorsey
ER, Voss TS, Shprecher DR,
Deuel LM, Beck CA, Gardiner IF, Coles MA, Burns RS,
Marshall FJ, Biglan KM
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.
