BOSTON—After at least 10 years of Parkinson’s disease, patients have an increased disease burden and a greater impairment in quality of life, according to research presented at the 2012 Annual Meeting of the American Neurological Association. Although the burden for caregivers also increased during a 10-year period, a high percentage of patients were able to live at home.
Few previous studies had prospectively examined patients with Parkinson’s disease at 10 years’ disease duration and beyond, said Anhar Hassan, MBBCh, FRACP, movement disorders fellow at the University of Florida in Gainesville. She and her colleagues sought to examine outcomes for such individuals through a cross-sectional study of 1,835 patients who were part of the multicenter National Parkinson’s Foundation Quality Improvement Initiative, which was launched in 2009. All patients had had Parkinson’s disease for 10 or more years.
An examination of demographic and clinical features showed that patients’ mean age was 67.8. The mean age of Parkinson’s disease onset was 52.7, and the median disease duration was 14.3 years. The majority of patients (62%) were male, and nearly all (95%) were Caucasian.
Most Patients Could Stand Without Assistance
After 10 years’ disease duration or more, 44% of patients were minimally disabled with Hoehn and Yahr stage 1 or 2, and approximately 40% were experiencing postural instability. About 16% of patients had Hoehn and Yahr stage 4 to 5, noted Dr. Hassan. Most patients (88.2%) could stand without assistance, although they sometimes experienced falls.
An analysis of patients’ medication usage showed that the majority of subjects took at least two medications and that nearly all patients used levodopa (95.7%). Patients also took dopamine agonists (45.6%) and antidepressants (37.3%). “Interestingly, 22% of patients had undergone deep brain stimulation,” said Dr. Hassan.
A family member was the regular caregiver for most patients (83.8%), and 93.1% of patients lived at home. The prevalence of patients living at home was “very high in our sample, which was drawn from specialty clinics, compared to prior studies reporting up to 27% [of patients with Parkinson’s disease] institutionalized at 10 years’ duration,” said Dr. Hassan.
Although caregiver burden and patients’ quality of life were impaired in all domains, “these patients look better than anticipated for 10 years’ disease duration or longer,” noted Dr. Hassan. Furthermore, other studies have noted higher rates of dementia and falls at 10 years’ disease duration or longer.
In-Home and Caregiver Support May Be Crucial
“Certainly, patients managed by specialist Parkinson’s disease neurologists can translate into reduced nursing home admissions and reduced falls and fracture risk, compared to general practitioner care for Parkinson’s disease patients, and perhaps that says something about our sample,” said Dr. Hassan. She noted that although the potential for survival bias and ascertainment bias may limit the value of the study’s results, the large patient cohort and uniform dataset are strengths. To help patients remain in their homes, policies to improve in-home support and caregiver support will be crucial, said the study authors.
—Lauren LeBano