Objective: To identify the unmet needs of people with young-onset Parkinson’s disease (YOPD) with the goal of defining future research priorities.

Background: YOPD is defined as having an age of onset between 21 and 40-50 years [1-4] and accounts for roughly 5-7% of PD diagnoses in the western hemisphere [5]. Although there has been an increase in the number of cases reported [6], YOPD remains a relatively neglected patient population. Because YOPD affects people in the prime of their lives, the psychosocial challenges are fundamentally different and portend a unique set of needs. People with YOPD differ socially from those diagnosed later in life, e.g., employed at time of diagnosis, have children in the home, more significant social isolation, lack of appropriate support groups, which contribute to higher rates of depression and lower overall subjective quality of life [7]. Learning what matters most to people with YOPD and defining how to improve quality of life is desperately needed.

Method: A cross-sectional sample of 198 people with YOPD completed surveys to identify areas of unmet need, and descriptive statistics were performed to quantitatively assess the responses. The mean age of respondents was 48 years (sd = 6.92), and the mean age at diagnosis was 41 years (sd = 6.21). 30.8% were male, 65.2% were married, 62.6% had children living at home, 81.3% were Caucasian, 60.1% had at least an associate degree, and 62.1% were working at least part-time.

Results: 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%).

Conclusion: This is the first study to describe the unmet needs of people with YOPD and suggests the needs are unique. The study prioritizes areas of unmet needs and can be used to inform the development and provision of educational resources, social support services, and personalized multidisciplinary medical care for these patients. These findings may also be used to focus future research directions.

References: 1. Mehanna R, Moore S, Hou JG, Sarwar AI, Lai EC. Comparing clinical features of young onset, middle onset and late onset Parkinson’s disease. Parkinsonism Relat Disord. 2014;20(5):530–4.
2. Quinn N, Critchley P, Marsden CD. Young onset Parkinson’s disease. Mov Disord. 1987;2(2):73–91. https://doi.org/10.1002/mds.870020201
3. Rana AQ, Siddiqui I, Yousuf MS. Challenges in diagnosis of young onset Parkinson’s disease. J Neurol Sci. 2012;323(1–2):113–6. https://doi.org/10.1016/j.jns.2012.08.029
4. Schrag A, Schott JM. Epidemiological, clinical, and genetic characteristics of early-onset parkinsonism. Lancet Neurol. 2006;5(4):355–63. https://doi.org/10.1016/S1474-4422(06)70411-2
5. Golbe LI. Young-onset Parkinson’s disease: a clinical review. Neurology. 1991;41(2):168–73. https://doi.org/10.1212/wnl.41.2_part_1.168
6. Willis AW, Schootman M, Kung N, Racette BA. Epidemiology and neuropsychiatric manifestations of Young Onset Parkinson’s Disease in the United States. Parkinsonism Relat Disord. 2013;19(2):202–6. https://doi.org/10.1016/j.parkreldis.2012.09.014
7. Schrag A, Morley D, Quinn N, Jahanshahi M. Impact of Parkinson’s disease on patients’ adolescent and adult children. Parkinsonism Relat Disord. 2004;10(7):391–7. https://doi.org/10.1016/j.parkreldis.2004.03.011

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MDS Abstracts - https://www.mdsabstracts.org/abstract/personalized-medicine-assessing-the-needs-of-people-with-young-onset-parkinsons-disease/