National Parkinson Foundation Quality Research Articles

The Profile of Long-term Parkinson's Disease Survivors with 20 Years of Disease Duration and Beyond.

Parkinson's disease (PD) patients with 20 years or more survival (PD-20) are not well characterized. To evaluate PD-20 patient characteristics and identify areas for improvement of their health care. The international, multicenter National Parkinson's Foundation Quality Improvement Initiative (NPF-QII) study database was queried to identify PD-20 subjects. Demographic and clinical data were analyzed. We identified 187 PD-20 subjects (55% men) representing 4% (187/4,619) of all NPF-QII participants. Subjects were mean age 69.5 years; mean age at PD onset was 44.0 years. The majority (75% ) had 20-25 years of PD duration, the longest duration being 49 years. They were median Hoehn and Yahr stage 3, and 75% had motor fluctuations. Half (54% ) reported exercising. The majority (89% ) were living at home and required a caregiver (88% ). They were mildly cognitively impaired for age (Montreal Cognitive Assessment estimate 22.6±3.7), with most deficits in verbal fluency and delayed recall. Quality of life (Parkinson's Disease Quality of Life Questionnaire index 36±15% ) was mild to moderately impaired, with most impairment in mobility and activities of daily living. Caregiver strain measured by the Multidimensional Caregiver Strain Index (27±16% ), recorded highest subscores in social constraint. PD-20 subjects aged <70 years versus ≥70 only differed significantly by worse cognition (P < 0.0001). PD-20 subjects reflect an elite group of PD survivors with early-onset disease and relatively mild cognitive disability despite long disease duration. Interventions for caregivers, mobility, and activities of daily living are areas that could improve caregiver burden and patient quality of life.

What are the issues facing Parkinson's disease patients at ten years of disease and beyond?: Data from the NPF-QII study

BackgroundParkinson's disease (PD) is the second most common neurodegenerative syndrome, classically characterized by levodopa-responsive motor features accompanied by non-motor mood, cognitive, sensory and autonomic issues. Over time, disease burden slowly accumulates resulting in diminished health status. Many clinicians consider the 10 year disease duration mark as significant, however the clinical status and health-related quality of life of patients reaching this milestone have not been well documented. MethodsA cross-sectional study was performed on PD patients with ≥10 years disease duration (PD-10) (n = 1835) included in the multicenter National Parkinson's Foundation Quality Improvement Initiative (NPF-QII). Demographic, clinical and health-related quality of life data was analyzed. ResultsPD-10 patients (62.2% male) had a mean age of 67.8 years (±9.5) with a mean age of PD onset of 52.7 years (±10.6), and median disease duration 14.3 years (interquartile range 11.5–18.1). Many were minimally disabled with Hoehn and Yahr stage 1 or 2 (44.0%) or experiencing postural instability (HY stage 3, 40.3%). Most (88.2%) were able to stand unaided, but falls were common (54.8%). Almost all were living at home (93.1%) with a family member as a regular caregiver (83.8%). PD-10 patients had an average of 1.9 (±1.4) co-morbidities, with arthritis (48.9%) and heart problems (31.7%) most commonly encountered. The majority (86.7%) took at least 2 medications: levodopa (95.7%), dopamine agonists (45.6%) and antidepressants (37.3%) were most commonly recorded. Most PD-10 patients were not currently utilizing physical, occupational or speech therapy, although two-thirds reported engaging in physical activity. Deep brain stimulation was documented in 22.4%. Overall the mean health-related quality of life and caregiver burden was impaired in all domains. ConclusionsOur data on PD patients with at least 10 years disease duration confirmed the younger age of onset of PD, but not the higher proportion of females or rest tremor, or the lower proportion of Caucasians seen in other aged PD cohorts. PD-10 patients had increased disease burden, increased caregiver burden, and impaired health-related quality of life. Although subjects mostly remained independently mobile, balance could be impaired with frequent falls identified. The prevalence of PD-10 patients living at home (93%) was very high in our sample which was drawn from specialty clinics, compared to prior studies reporting up to 27% PD patients institutionalized at 10 years duration. Thus policies to improve in-home support and caregiver support will be crucial in efforts aimed at maintaining patients in a home setting.