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The Profile of Long-term Parkinson's Disease Survivors with 20 Years of Disease Duration and Beyond.
J Parkinsons Dis. 2015; 5(2):313-9.JP

Abstract

BACKGROUND

Parkinson's disease (PD) patients with 20 years or more survival (PD-20) are not well characterized.

OBJECTIVE

To evaluate PD-20 patient characteristics and identify areas for improvement of their health care.

METHODS

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.

RESULTS

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).

CONCLUSIONS

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.

Authors+Show Affiliations

Center for Movement Disorders & Neurorestoration, University of Florida, Gainesville, Florida, USA. Department of Neurology, Mayo Clinic, Rochester, Minnesota, USA.Department of Statistics, University of Florida, Gainesville, Florida, USA.National Parkinson's Foundation, Miami, Florida, USA.Parkinson's Disease and Movement Disorders Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.Movement Disorders Unit, Department of Neurology, Tel-Aviv Sourasky Medical Center, Sackler School of Medicine, Tel-Aviv University, Tel-Aviv, Israel.The Movement Disorders Centre, Toronto Western Hospital, University Health Network, University of Toronto, Toronto, Ontario, Canada.Radboud University Nijmegen Medical Center, Donders Institute for Brain, Cognition and Behavior, Department of Neurology, Nijmegen, Netherlands.Center for Movement Disorders & Neurorestoration, University of Florida, Gainesville, Florida, USA.Center for Movement Disorders & Neurorestoration, University of Florida, Gainesville, Florida, USA.

Pub Type(s)

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

Language

eng

PubMed ID

25720446

Citation

Hassan, Anhar, et al. "The Profile of Long-term Parkinson's Disease Survivors With 20 Years of Disease Duration and Beyond." Journal of Parkinson's Disease, vol. 5, no. 2, 2015, pp. 313-9.
Hassan A, Wu SS, Schmidt P, et al. The Profile of Long-term Parkinson's Disease Survivors with 20 Years of Disease Duration and Beyond. J Parkinsons Dis. 2015;5(2):313-9.
Hassan, A., Wu, S. S., Schmidt, P., Simuni, T., Giladi, N., Miyasaki, J. M., Bloem, B. R., Malaty, I. A., & Okun, M. S. (2015). The Profile of Long-term Parkinson's Disease Survivors with 20 Years of Disease Duration and Beyond. Journal of Parkinson's Disease, 5(2), 313-9. https://doi.org/10.3233/JPD-140515
Hassan A, et al. The Profile of Long-term Parkinson's Disease Survivors With 20 Years of Disease Duration and Beyond. J Parkinsons Dis. 2015;5(2):313-9. PubMed PMID: 25720446.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - The Profile of Long-term Parkinson's Disease Survivors with 20 Years of Disease Duration and Beyond. AU - Hassan,Anhar, AU - Wu,Samuel S, AU - Schmidt,Peter, AU - Simuni,Tanya, AU - Giladi,Nir, AU - Miyasaki,Janis M, AU - Bloem,Bastiaan R, AU - Malaty,Irene A, AU - Okun,Michael S, PY - 2015/2/28/entrez PY - 2015/2/28/pubmed PY - 2016/6/23/medline KW - Advanced KW - Parkinson’s disease KW - complications KW - quality-of-life SP - 313 EP - 9 JF - Journal of Parkinson's disease JO - J Parkinsons Dis VL - 5 IS - 2 N2 - BACKGROUND: Parkinson's disease (PD) patients with 20 years or more survival (PD-20) are not well characterized. OBJECTIVE: To evaluate PD-20 patient characteristics and identify areas for improvement of their health care. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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. SN - 1877-718X UR - https://www.unboundmedicine.com/medline/citation/25720446/The_Profile_of_Long_term_Parkinson's_Disease_Survivors_with_20_Years_of_Disease_Duration_and_Beyond_ L2 - https://content.iospress.com/openurl?genre=article&amp;id=doi:10.3233/JPD-140515 DB - PRIME DP - Unbound Medicine ER -