Abstract
BackgroundParkinson’s disease (PD) is typically considered as a disease of the elderly. However, there is a sizeable subgroup of patients where PD starts at a younger age, known as young-onset PD (YOPD). We evaluated the differences in quality of life and caregiver strain between YOPD and later onset PD (LOPD) patients in a large cohort.MethodsIn collaboration with the Parkinson Foundation Quality Improvement Initiative (PF-QII), we conducted a retrospective three-year analysis on 962 PD patients of the QII database (starting date May 2016). Of these, 272 patients had YOPD, and 690 had LOPD. The Parkinson’s Disease Questionnaire-39 (PDQ-39) total score served as primary outcome measure. Furthermore, we analysed group differences in modified caregiver strain index (MCSI) total score, three cognition functions, and number of falls. A regression analysis adjusting for covariates was used to assess the association of age at onset with PDQ-39 and MCSI.ResultsPDQ scores were better in YOPD patients, MCSI scores on social constraint were lower in YOPD patients, but scores on financial constraint were higher in this group. After adjusting for covariates, YOPD patients had better quality of life and less caregiver strain at all follow-up moments, but not at baseline. Decline over time for all outcomes was lower in the YOPD group compared to the LOPD group. Cognitive functioning and number of falls progressed slower in the YOPD group compared to the LOPD group.ConclusionCompared to LOPD patients, YOPD patients had a better quality of life, less caregiver strain, fewer falls and better cognitive functioning after their first follow-up visit, and also a slower decline over time.
Highlights
Parkinson’s disease (PD) is associated with a great impact on quality of life of patients [1, 2]
We hypothesize that young-onset PD (YOPD) patients, after being initially more struck by their diagnosis, have better capabilities to adapt to their disease and a stronger social network, resulting in better quality of life over time, as studies into Journal of Neurology (2021) 268:1102–1109 other diseases with a marked impact on quality of life have pointed out [10,11,12]
Registry was done by administering a questionnaire by a qualified nurse, research coordinator or doctor, consisting of multiple categories including, amongst others, Parkinson’s Disease Questionnaire-39 (PDQ-39), Modified Caregiver Strain Index (MCSI), cognitive functioning, Timed Up and Go Test (TUGT), number of falls, type and number of medication [13]
Summary
Parkinson’s disease (PD) is associated with a great impact on quality of life of patients [1, 2]. Quality of life of PD patients is mainly dependent on disease severity and disability, as well as neuropsychiatric symptoms like depression [1,2,3,4]. We evaluated the differences in quality of life and caregiver strain between YOPD and later onset PD (LOPD) patients in a large cohort. We analysed group differences in modified caregiver strain index (MCSI) total score, three cognition functions, and number of falls. After adjusting for covariates, YOPD patients had better quality of life and less caregiver strain at all follow-up moments, but not at baseline. Conclusion Compared to LOPD patients, YOPD patients had a better quality of life, less caregiver strain, fewer falls and better cognitive functioning after their first follow-up visit, and a slower decline over time
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