TY - JOUR
T1 - Early-onset Parkinson's disease
T2 - An assessment of unmet psychosocial needs
AU - McDaniels, Bradley
AU - Subramanian, Indu
AU - Kurian, Shelley
AU - Chitnis, Shilpa
N1 - Publisher Copyright:
© 2023
PY - 2023/5
Y1 - 2023/5
N2 - Background: Early onset Parkinson's disease (EOPD) affects people in the prime of their lives, typically between 21 and 50 years of age, which results in a variety of challenges that are unique compared to those diagnosed later in life. A better understanding of the unmet needs of this population is critical to delivering bespoke care and improving their quality of life. Objectives: To assess the unmet needs of people with early onset Parkinson's disease. Methods: A cross-sectional sample of 198 adults with self-identified early onset Parkinson's disease completed surveys to ascertain the most common unmet needs of this population. Simple descriptive statistics including frequencies, means, and standard deviations were used to quantify the most common unmet needs and were compared between men, women, and Hispanic/Latino with significance determined by chi-square tests. Results: Overall, the top five unmet needs were (1) need for “a community more like me” (65.2%), (2) more PD information (48%), (3) information about how their PD will progress (47%), (4) help with mental health issues (34.8%), and (5) help with employment issues (33.8%). The top unmet need for men was help with employment issues (50.8%), for women, “a community more like me” (72.3%), and for Hispanic/Latinos, more PD information (47%). Conclusion: Although the number of people living with EOPD is considerably smaller than those with conventional age at onset, the potential impact to quality of life in this population remains tremendous. We propose a framework to start to address these needs.
AB - Background: Early onset Parkinson's disease (EOPD) affects people in the prime of their lives, typically between 21 and 50 years of age, which results in a variety of challenges that are unique compared to those diagnosed later in life. A better understanding of the unmet needs of this population is critical to delivering bespoke care and improving their quality of life. Objectives: To assess the unmet needs of people with early onset Parkinson's disease. Methods: A cross-sectional sample of 198 adults with self-identified early onset Parkinson's disease completed surveys to ascertain the most common unmet needs of this population. Simple descriptive statistics including frequencies, means, and standard deviations were used to quantify the most common unmet needs and were compared between men, women, and Hispanic/Latino with significance determined by chi-square tests. Results: Overall, the top five unmet needs were (1) need for “a community more like me” (65.2%), (2) more PD information (48%), (3) information about how their PD will progress (47%), (4) help with mental health issues (34.8%), and (5) help with employment issues (33.8%). The top unmet need for men was help with employment issues (50.8%), for women, “a community more like me” (72.3%), and for Hispanic/Latinos, more PD information (47%). Conclusion: Although the number of people living with EOPD is considerably smaller than those with conventional age at onset, the potential impact to quality of life in this population remains tremendous. We propose a framework to start to address these needs.
KW - Early-onset Parkinson's disease
KW - Parkinson's disease
KW - Unmet needs
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U2 - 10.1016/j.parkreldis.2023.105395
DO - 10.1016/j.parkreldis.2023.105395
M3 - Article
C2 - 37037068
AN - SCOPUS:85151666256
SN - 1353-8020
VL - 110
JO - Parkinsonism and Related Disorders
JF - Parkinsonism and Related Disorders
M1 - 105395
ER -