5 Myths about racial disparities in the treatment of Parkinson’s disease
There are many myths about racial disparities in the treatment of Parkinson’s. We had the pleasure of sitting down with two of the experts to find out the truth and also to learn what we can do about it.
Who are Disep I. Ojukwu, MD, MBA, MPH and Casey H. Halpern, MD?
Dr. Disep Ojukwu is a research assistant in the Halpern-Malenka Laboratory at Stanford University. Under the direction of Dr. Casey Halpern, Dr. Ojukwu focuses on health disparities in movement disorders, particularly Parkinson’s disease and essential tremor. She received her MD/MBA degree from St. George’s University School of Medicine and her Master of Public Health degree from Loma Linda University School of Public Health as a triple major in epidemiology, international health, and biostatistics. She also obtained her Bachelor of Science degree in Biochemistry from UCLA. Before attending medical school, she worked as a public health statistician and was actively involved in evaluating health disparities among African American communities in San Bernardino County, California.
Dr. Casey Halpern is a board-certified neurosurgeon and Associate Professor of Neurosurgery at Stanford University. He also serves as the Director of Epilepsy Surgery at the Stanford Epilepsy Center. Dr. Halpern received his medical degree from the University of Pennsylvania School of Medicine. He completed his residency in Neurological Surgery and a fellowship in Stereotactic and Functional Neurosurgery at the University of Pennsylvania. Over the past 20 years, he has received numerous awards, published original research and editorials, written multiple book chapters, and served as the principal investigator of several clinical trials. He focuses on the surgical treatment of movement disorders and epilepsy and has particular interest in minimally invasive surgical approaches, as well as neurostimulation procedures
Myth #1 – The rate of Parkinson’s disease is similar in
all racial groups in the U.S.
Studies suggest that there are disparities in the rates of Parkinson’s disease (PD) when comparing racial groups. The age-adjusted prevalence rate of PD in Black individuals is approximately two times lower than White individuals (Willis et al., 2010). However, Blacks with PD have a higher risk of death from all causes than Whites even after accounting for age, gender, comorbidity index, socioeconomic status, and treating physician specialty (Willis et al., 2012). Inequities can also be observed in the diagnosis rate of PD. Dahodwala et al. (2009) showed that young African American Medicaid patients were diagnosed with PD at half the rate of White patients (even after accounting for age, gender, location of care, health care use, and reason for Medicaid eligibility).
Myth #2 – The treatment of Parkinson’s disease with
medications is similar in all racial groups in the U.S.
We don’t know for sure because there are very limited published studies on the effectiveness of medications for PD among racial groups. However, there are disparities in how medical treatments are managed. Cheng et al. (2008) revealed that if a U.S. veteran patient used a dopamine agonist (for example, bromocriptine, pergolide, pramipexole, ropinirole) as the only medication for the motor symptoms of PD, a statistically lower percentage of non-White veteran patients than White patients had their medication adjusted to a therapeutic range. The same study also showed that non-White veteran patients had a statistically lower chance of receiving initial treatment or follow-up for depression. This was true even after accounting for the patient’s age, level of comorbidity, duration of PD diagnosis, receipt of non-Veterans Administration care, annual frequency of visits, and specialty involvement (Cheng et al., 2008)
Myth #3 – The treatment of Parkinson’s disease with
deep brain stimulation is similar in all racial groups in
the U.S.
The racial inequities in the treatment of PD using deep brain stimulation (DBS) is more striking than the disparities in treatment using medications. For more than 20 years, DBS has been an effective treatment option for PD. Also, DBS is known to be a more definitive treatment option for PD. However, for every 1 Black patient who received DBS, a research study of Medicare beneficiaries showed that 5 White patients received the procedure (Willis et al., 2014). Additionally, a different study showed that African Americans were nearly 8 times less likely to undergo DBS surgery compared with White patients, even after accounting for patient- and hospital-related factors (Chan et al., 2014). Another study of 71 non-federal U.S. hospitals revealed that 85.9% of patients who received DBS surgery for PD were White, compared with 0.6% who were African American (Eskandar et al., 2003).
There are several factors that explain why Black patients with PD receive DBS less often than White patients. Some of these factors include a higher occurrence of dementia in Black patients (which could disqualify a patient from being eligible to receive DBS), lower socioeconomic status, higher likelihood of having medical comorbidities, patient distrust, and inadequate patient-physician communication (Willis et al., 2014). However, researchers also revealed an alarming finding. A statistical predictor of DBS non-use was “African American race.” Even after accounting for the patient’s comorbidity score (which was indeed higher in Black patients who had PD), “African American race” still predicted non-use of DBS (Chan et al., 2014). In fact, despite receiving care at urban teaching hospitals in areas with a higher than average density of neurologists and neurosurgeons, Black patients with PD still had disproportionately fewer DBS procedures. The same study also revealed that another significant predictor of Blacks with PD not receiving DBS was use of Medicaid. Surprisingly, White patients with PD who used Medicaid received statistically more DBS surgeries than Black patients with PD who did not use Medicaid (Chan et al., 2014).
Myth #4 – If there are racial inequalities in the
treatment of Parkinson’s disease, they are easy to fix
because there are no barriers.
There are many patient-, provider-, and system-level factors that create barriers to eliminating racial health inequalities (Dahodwala et al., 2009). In particular, there are two barriers that are worth mentioning. First, the small amount of race-level data continues to be a problem. One reason for this shortage of data is the low number of minorities enrolled in clinical trials. Among 32 PD clinical trials conducted in the U.S. over a 23-year period, 9 studies reported detailed racial/ethnic information of the participants enrolled in those clinical trials. Of the participants enrolled in those 9 studies, only 1.7% were African American and 1.3% were Latino/Hispanic (Schneider et al., 2009).
The second major barrier is the decreased trust among minority patients toward the health care system, which stems from past and ongoing discrimination. According to Murthy et al. (2004), “minorities are more likely to express concerns about exploitation, dishonesty regarding risks of experimental treatment, and motivations of researchers.” This lack of trust hinders progress toward achieving equitable health care and improved quality of life for all minority communities. We must work together to improve trust.
Myth #5 – Culture shouldn’t play a role in treating
minority patients.
We believe that culture-centered care should be implemented in all physician practices to build patient trust and ultimately attain positive health outcomes among minority patients. In order to strengthen the patient-physician relationship, a wide range of trained language interpreters should be offered to patients free-of-charge. In addition to English, some of the languages spoken within the Black diaspora include French, Creole, Pidgin English, Portuguese, and Swahili (Laddaran, 2015; Medonça, 2019). Additionally, faith-based clergy (e.g., pastors, bishops, priests) should be made available to pray with patients via telephone as they wait to be seen by their physicians for routine care. Because religion has been foundational in Black communities for many years, this component could be impactful to improve health outcomes of Black patients (Baruth et al., 2013).
In addition to language and religion, other cultural aspects should be implemented in medical care. In some societies, the family unit – not only the individual – is involved in making decisions for the individual. Other societies appoint a primary decision-maker for all individuals in the family. Physicians should take these cultural dynamics into consideration during the patient’s consultation session. Remote communication using telephone or video may be required in order to include the relevant family members or designated decision-maker. Also, diet preference is another way in which culture can play a role in treating minority patients. When offering nutritional counseling to patients, foods that are staples of the patient’s culture should be integrated. Being culturally sensitive is a huge and vital way to gain trust in delivering care.
To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
Selected References:
Baruth M, Wilcox S, Saunders RP. The role of pastor support in a faith-based health promotion intervention. Family & Community Health. 2013;36(3):204-214.
Chan AK, McGovern RA, Brown LT, Sheehy JP, Zacharia BE, Mikell CB, et al. Disparities in access to deep brain stimulation surgery for Parkinson disease: Interaction between African American race and Medicaid use. JAMA Neurology. 2014;71(3):291-299.
Cheng EM, Siderowf AD, Swarztrauber K, Lee M, Vassar S, Jacob E, et al. Disparities of care in veterans with Parkinson's disease. Parkinsonism Relat Disord. 2008;14(1):8-14.
Dahodwala N, Siderowf A, Xie M, Noll E, Stern M, Mandell DS. Racial differences in the diagnosis of Parkinson's disease. Movement Disorders. 2009;24(8):1200-1205.
Eskandar EN, Flaherty A, Cosgrove GR, Shinobu LA, Barker FG, 2nd. Surgery for Parkinson disease in the United States, 1996 to 2000: Practice patterns, short-term outcomes, and hospital charges in a nationwide sample. J Neurosurg. 2003;99(5):863-871.
Laddaran KC. Pidgin English now an official language of Hawaii. Atlanta, GA: CNN. 2015. https://www.cnn.com/2015/11/12/living/pidgin-english-hawaii/index.html
Medonça JL. The languages of Angola. Munich, Germany: Goethe-Institut. 2019. https://www.goethe.de/prj/lat/en/ide/21722738.html
Murthy VH, Krumholz HM, Gross CP. Participation in cancer clinical trials. JAMA. 2004;291(22):2720-2726.
Schneider MG, Swearingen CJ, Shulman LM, Ye J, Baumgarten M, Tilley BC. Minority enrollment in Parkinson's disease clinical trials. Parkinsonism & Related Disorders. 2009;15(4):258-262.
Willis AW, Evanoff BA, Lian M, Criswell SR, Racette BA. Geographic and ethnic variation in Parkinson disease: A population-based study of US Medicare beneficiaries. Neuroepidemiology. 2010;34(3):143-151.
Willis AW, Schootman M, Kung N, Evanoff BA, Perlmutter JS, Racette BA. Predictors of survival in patients with Parkinson disease. Archives of Neurology. 2012;69(5):601.
Willis AW, Schootman M, Kung N, Wang X-Y, Perlmutter JS, Racette BA. Disparities in deep brain stimulation surgery among insured elders with Parkinson disease. Neurology. 2014;82(2):163-171.