Unveiling the unmet needs of Early-onset Parkinson’s disease: A roadmap to personalized care

“This study sheds light on the unmet needs of people with early-onset Parkinson’s disease, emphasizing the necessity for a tailored care approach to address their unique set of challenges and improve their quality of life.”

Parkinson’s disease (PD) is a complex neurodegenerative disorder that predominantly  affects individuals in their later years, with a median age of onset at around 60 years. However, the impact of PD extends beyond the elderly population, as a subset of individuals experience the onset of motor symptoms at a much younger age, between 21 and 50 years, classifying them as early-onset PD (EOPD). This underrecognized group, constituting 3% to 7% of the PD population, faces unique challenges and psychosocial needs that demand a more comprehensive understanding and targeted intervention. EOPD exhibits distinctive clinical characteristics compared to late-onset PD. These include a slower disease progression, higher incidence of dystonia, increased rates of depression, and poorer quality of life. Moreover, individuals with EOPD have a higher genetic contribution to their condition. The slower cognitive decline, fewer gait disturbances, and lower incidence of falls and freezing of gait further differentiate EOPD from its late-onset counterpart. However, depression remains a common and concerning feature of EOPD, warranting increased attention. The psychosocial needs of individuals with EOPD differ significantly from those diagnosed later in life. Many EOPD patients are still employed at the time of diagnosis, have children living at home, and experience higher social isolation. The lack of appropriate support groups and stigma surrounding EOPD contribute to higher rates of depression and lower overall subjective quality of life. These unique psychosocial factors underscore the importance of addressing the holistic well-being of individuals with EOPD. A recent study, led by Professor Bradley McDaniels from the Department of Rehabilitation and Health Services at the University of North Texas, in collaboration with Dr. Indu Subramanian, Shelley Kurian, and Dr. Shilpa Chitnis, discussed the unmet needs of individuals living with EOPD. They provided valuable insights into the distinct challenges faced by this patient population and underscores the necessity of tailored approaches to improve their quality of life.

To gain a deeper understanding of the unmet needs of EOPD patients, the researchers enrolled 198 adults with self-reported diagnoses from a nationally recognized Parkinson’s disease educational and resource organization. Participants were surveyed using electronic questionnaires, and the responses were analyzed to identify areas of unmet need. The eligibility criteria included being over 18 years old, having a self-confirmed diagnosis of EOPD before the age of 50, and the ability to complete an online survey. It is noteworthy to mention the study’s innovative approach, utilizing web-based surveys for data collection, allowed for the inclusion of populations that might otherwise be underrepresented in research, including women, individuals with children at home, and Hispanic patients. This methodology offers a blueprint for future investigations into the needs of specific patient groups.

The authors’ findings revealed the top five unmet needs among individuals with EOPD as follows: need for a community more like me (65.2%), more PD information (48%), information about how PD will progress (47%), help with mental health issues (34.8%), and help with employment issues (33.8%). They also assessed the needs of men and women separately and found gender-specific differences. For men, the top five unmet needs included help with employment issues, the need for a community more like them, help with financial strain, help navigating role changes in the home, and information on how PD will progress. In contrast, women’s top five unmet needs were the need for a community more like them, more PD information, information on how PD will progress, help with diet and nutrition, and help with mental health issues.

Notably, the authors included a significant number of Hispanic/Latino participants, allowing for an exploration of their unique needs. While not all differences reached statistical significance, Hispanic/Latino respondents expressed needs such as more PD information, the need for a community more like them, help with employment issues, help with marital issues, help with mental health issues, help with finding new purpose, help with financial strain, and more time with medical doctors. The inclusion of a substantial number of Hispanic/Latino participants highlights the importance of diversity in research. By acknowledging the distinct needs of various demographic groups, healthcare providers and researchers can develop more inclusive and culturally competent interventions.

In conclusion, the study by Professor Bradley McDaniels and colleagues represents a crucial step in recognizing and addressing the unmet needs of individuals living with EOPD and marks a significant contribution to the field of Parkinson’s disease research. It highlights the pressing need for personalized care and support for individuals with EOPD, who face unique challenges related to their age and circumstances. By amplifying the voices of EOPD patients and advocating for their specific needs, we can pave the way for improved quality of life and more effective interventions in the future.