Advocacy and awareness; prevention and risk reduction; diagnosis, treatment, and care; caregiver support; and research were listed as actionable steps that are urgently needed to address global disparities in Parkinson disease.
A special communication published today in JAMA Neurology provided actionable steps for stakeholders worldwide to address the dramatic increase in Parkinson disease (PD) cases and associated cost-related burden and potential health service strain.
As the fastest growing neurological disorder, PD is estimated to have resulted in 5.8 million disability-adjusted life-years (DALYs) and 329,000 deaths in 2019, increases of 81% and more than 100%, respectively, since 2000.
The rise in cases is hypothesized to be multifactorial, stemming from drivers including aging populations and increased awareness of the disease. However, researchers highlight that most people affected by PD live in low- and middle-income countries (LMICs) and experience large inequalities in access to neurological care and essential medicines.
“As the world’s population ages and the number of people with PD continues to grow, there is a pressing need for a concerted and robust public health response. Across the board, governments, multilateral agencies, donors, public health organizations, and health care professionals constitute potential stakeholders who are urged to make this a priority,” they wrote.
In accordance with resolution 73.10 adopted by the 73rd World Health Assembly to develop an intersectoral global action plan on epilepsy and other neurological disorders, the Brain Health Unit at the World Health Organization convened a multidisciplinary, sex-balanced, international consultation workshop in April 2021 to identify workable avenues for action with a focus on LMICs and resource-limited settings. A total of 6 actionable steps were listed within the domains of disease burden.
Advocacy and Awareness
Although awareness of PD is increasing and clinical diagnostic skills are improving, diagnostic delays remain a common challenge, with more than 1 in 5 (21%) patients indicating in a prior survey that they had to see their general provider 3 times before being referred to a specialist.
Factors such as young age at onset of PD and sex/race differences were mentioned by authors to be associated with disparate care and delays in diagnosis.
“There are slow improvements in LMICs owing to improved training of the health care workforce, screening questionnaires, and the additional effect of patient-driven and family-driven advocacy groups,” they added.
As PD often affects individuals in their working years, researchers called for public education, policy and legislation change, and improved awareness of existing workplace antidiscrimination policies that are available in different languages to improve the lives of people living with PD.
Prevention and Risk Reduction
A myriad of factors have been examined as risk factors for PD, but identifying clear risks for PD, particularly modifiable ones, remains a substantial unmet need, said researchers.
Notably, pesticides and herbicides, chemicals that are increasingly deployed in LMICs, have been considered as modifiable risk factors for PD and may pose significant risks for those residing in these areas.
“It is particularly concerning in the context of preventing PD that current procedures deployed to screen for toxic effects of pesticides before release to market do not specifically focus on potential toxic effects for dopaminergic neurons in the substantia nigra, from which arise the main symptoms of PD,” said the study authors.
“Another issue of concern is that pesticides are typically screened for toxic effects in isolation, whereas the reality is that citizens are exposed to potentially interacting cocktails of different pesticides, sometimes simultaneously or through different time periods, which could have synergistic effects.”
Along with improved risk assessments to gauge the effects of pesticides, they said that better comprehension of other modifiable risk factors is warranted, including exposure to industrial solvents, heavy metals, and air pollution, as well as potential protective factors such as caffeine, physical activity, and uric acid.
Diagnosis, Treatment, and Care
With a lack of care capabilities in low-resource settings, researchers advocated for the implementation of universal health coverage to achieve the goal of developing culturally and socioeconomically acceptable models of care for PD that are interdisciplinary, replicable, affordable, and accessible.
Ensuring that these models integrate a continuum of services, including neurorehabilitation and palliative care, at the earliest stages of diagnosis was also recommended.
“A large treatment gap exists for many neurological disorders, including PD. A major contribution to the wide gap is reduced access to effective medications and, when available, associated high cost,” they highlighted.
“Counseling on sleep, diet, and mind-body approaches, such as meditation, should be explored as well as engagement in community or research, where available. However, very few patients are referred to therapists who have the skills for these types of multidisciplinary interventions.”
PD has been shown in prior research to have a substantial impact on caregivers of patients, particularly those who are in advanced stages of the progressive disease or are dealing with OFF periods, which is the reappearance or worsening of motor and nonmotor symptoms.
A recent study found that caregivers of patients with PD reporting OFF periods were associated with a greater loss of earnings, opportunities, or ability to maintain employment compared with caregivers for patients without OFF periods.
Several strategies were mentioned by researchers to improve caregiver burden in the early stages of the disease, such as effective communication and education about caregiver roles, medications, and adverse effects. Social workers, patient support groups, and community-based support were also said to be effective resources for caregivers.
“In addition to caregiver burden, it is important to recognize and to treat demoralization in the patient and, potentially, in the caregiver, which may be present even if depression and mood disorders are absent,” they added.
Lastly, research in PD has grown substantially in the past 2 decades with increased funding and a greater number of initiatives. But lack of research in LMICs remains a challenge and is crucial to understand cultural and population differences of variable risk factors, genetics, and phenomenology of PD.
“Ensuring that countries have appropriate funding to conduct and implement research as well as building research capacity where needed will be a critical next step to achieving progress,” said the study authors. “Productive research involves improving infrastructure in LMICs, ensuring appropriate ethical procedures, and growing global collaborations among investigators and research consortia.”
Noting PD as a formidable public health challenge, researchers concluded that it is now more important than ever to work collaboratively before the burden of the disease overwhelms our ability to effectively respond to these critical needs.
Schiess N, Cataldi R, Okun MS, et al. Six action steps to address global disparities in Parkinson disease. JAMA Neurol. Published online July 11, 2022. doi:10.1001/jamaneurol.2022.1783