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What are the issues facing Parkinson's disease patients at ten years of disease and beyond? Data from the NPF-QII study.
Parkinsonism Relat Disord. 2012 Dec; 18 Suppl 3:S10-4.PR

Abstract

BACKGROUND

Parkinson'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.

METHODS

A 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.

RESULTS

PD-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.

CONCLUSIONS

Our 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.

Authors+Show Affiliations

Department of Neurology and Neurosurgery, University of Florida, 3450 Hull Rd., Gainesville, FL 32607, USA.No affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info available

Pub Type(s)

Journal Article
Multicenter Study
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

22776044

Citation

Hassan, Anhar, et al. "What Are the Issues Facing Parkinson's Disease Patients at Ten Years of Disease and Beyond? Data From the NPF-QII Study." Parkinsonism & Related Disorders, vol. 18 Suppl 3, 2012, pp. S10-4.
Hassan A, Wu SS, Schmidt P, et al. What are the issues facing Parkinson's disease patients at ten years of disease and beyond? Data from the NPF-QII study. Parkinsonism Relat Disord. 2012;18 Suppl 3:S10-4.
Hassan, A., Wu, S. S., Schmidt, P., Malaty, I. A., Dai, Y. F., Miyasaki, J. M., & Okun, M. S. (2012). What are the issues facing Parkinson's disease patients at ten years of disease and beyond? Data from the NPF-QII study. Parkinsonism & Related Disorders, 18 Suppl 3, S10-4. https://doi.org/10.1016/j.parkreldis.2012.06.014
Hassan A, et al. What Are the Issues Facing Parkinson's Disease Patients at Ten Years of Disease and Beyond? Data From the NPF-QII Study. Parkinsonism Relat Disord. 2012;18 Suppl 3:S10-4. PubMed PMID: 22776044.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - What are the issues facing Parkinson's disease patients at ten years of disease and beyond? Data from the NPF-QII study. AU - Hassan,Anhar, AU - Wu,Samuel S, AU - Schmidt,Peter, AU - Malaty,Irene A, AU - Dai,Yun Feng, AU - Miyasaki,Janis M, AU - Okun,Michael S, Y1 - 2012/07/07/ PY - 2012/7/11/entrez PY - 2012/7/11/pubmed PY - 2013/9/21/medline SP - S10 EP - 4 JF - Parkinsonism & related disorders JO - Parkinsonism Relat Disord VL - 18 Suppl 3 N2 - BACKGROUND: Parkinson'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. METHODS: A 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. RESULTS: PD-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. CONCLUSIONS: Our 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. SN - 1873-5126 UR - https://www.unboundmedicine.com/medline/citation/22776044/What_are_the_issues_facing_Parkinson's_disease_patients_at_ten_years_of_disease_and_beyond_Data_from_the_NPF_QII_study_ L2 - https://linkinghub.elsevier.com/retrieve/pii/S1353-8020(12)00252-0 DB - PRIME DP - Unbound Medicine ER -