2021 HDSA Clinical Research Pilot Grant Recipient
Department of Neurology, Northwestern Feinberg School of Medicine; Divison of Palliative Medicine, Department of Internal Medicine, University of California San Francisco
Mentors: David Cella, Ph.D. (Northwestern); Danny Bega, MD (Northwestern); Benzi Kluger, MD (Rochester); Hillary Lum, MD, Ph.D. (Colorado); and Allison Applebaum (Memorial Sloan Kettering)
As part of its patient-centric research focus, HDSA invites expert HD clinicians from its Centers of Excellence network to submit proposals for projects that will directly engage HD families in clinical research. In 2021, Dr. Leonard Sokol was awarded funds to study how meaning-centered approaches to HD care affect quality of life for those affected by the disease. Dr. Sokol shared with HDSA his experiences conducting this research and his perspectives on the field.
On the surface, Dr. Leonard Sokol seems like your average San Franciscan. Having recently moved to the west coast from Chicago, he enjoys biking, reading, and spending time with his wife and family, but Dr. Sokol also has a deep passion for bettering the lives of people affected by Huntington’s disease (HD) and their families. As a neurologist with specific interests in palliative care, there were many aspects of working with HD families that drew Dr. Leonard Sokol toward the community; the unyielding resilience of affected individuals, the generational nature of the disease, and HD’s diverse effects on health-related quality of life being just a few of them.
While studies exist that have examined how to best support people enduring the effects of devastating illnesses, until recently, no one had set out to understand the end-of-life supportive care needs of people with HD, specifically. For Dr. Sokol, this was motivation to conduct his HDSA-supported clinical pilot study examining factors that contribute to quality of life in people affected by HD. “We lacked a systematic investigation into how to best support people with HD throughout all stages of the illness trajectory,” noted Dr. Sokol, “While we work to slow or cure the disease, how can we still also provide supportive care to these people and their family members—and what exactly might those needs entail?”
To uncover the unique care considerations for people with HD, Dr. Sokol and his team set out to answer three main questions: what are the supportive care needs of people with HD, how do patient-reported outcomes relate to quality of life changes in people with HD, and what relationships exist between supportive care concepts, healthcare outcomes, and utilization of end-of-life care for people with HD?
The results were clear: in a survey of HD clinicians, 90 percent reported a belief that a high sense of meaning and purpose predicted better mental health outcomes for people with HD. Dr. Sokol’s research demonstrated that, in people affected by HD, a sense of meaning and purpose is inextricably linked with life satisfaction and happiness—regardless of the burden of HD-associated physical, mental, social, and cognitive symptoms—across all disease stages. The study also uncovered valuable insights into how different demographics within the HD community engage with end-of life planning. Overall, the study supported the stipulation that that specialist supportive care is valuable to support the health-related quality of life of people with HD.
To Dr. Sokol, these findings present opportunities to immediately impact HD clinical practice and care. The takeaways of this study can inform how HD clinicians communicate with the individuals they serve about end-of-life care, how people with HD are screened for symptoms that may negatively impact their quality of life, and how they are referred to supportive care to address those concerns. Lastly, the study’s findings explain the immediate and long-term effects of supportive care on health-related quality of life in people with HD. “Engaging in meaning-making, discussions about the purpose [of supportive care interventions], and these sorts of things will undoubtedly bear fruit in the direct doctor-patient relationship—even if it is 10 or 15 minutes at the doctor’s office.” said Dr. Sokol.
While this line of work presents challenges, funding among them, Dr. Sokol finds it both fascinating and rewarding to study topics that can immediately improve the lives of people affected by HD. “I find understanding the principles of supportive care and how those relate to a variety of outcomes—which can translate into doctor-patient discussions, referrals, and the like—to provide an immediate source of gratification to the HD patients [we] serve. I find it enjoyable to think about what the entire spectrum—from the preliminary data to what a successful implementation and ‘change’—would genuinely entail for HDSA [Centers of Excellence].”
As he moves forward in his career, Dr. Sokol hopes to create a specialty clinic for palliative care in HD, incorporate family feedback into recommendations for how to talk about end-of-life care subjects, and create resources around palliative care in HD that can serve as a framework for HD clinics far and wide. His HDSA supported research project is an important step in reaching these goals. “The grant support has accelerated my growth as an HD clinician, researcher, and professional, and I am excited to further build upon this work now and well into the future.”