Barriers to Multidisciplinary Care at Most US Huntington’s Clinics: Survey

Clinics can't get access to genetic counseling, mental health support

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Many U.S. clinics treating people with Huntington’s disease reported difficulties in accessing needed professionals — such as genetic counselors, social workers, and dietitians — to help provide multidisciplinary care to patients with the progressive disorder, according to a survey-based study.

Researchers billed the study, which involved more than 150 clinics across the U.S., as “the first of its kind to include non-specialty neurologists and primary care physician practices.”

“We found that [Huntington’s disease] care was inconsistently applied and that higher … volume practices tended to be better equipped to provide multi-disciplinary staffing,” the researchers wrote. “This study adds to the current literature by providing significant information about the organization of clinical care and services for [Huntington’s] patients in the U.S.”

The study, “Assessing the state of care for Huntington disease in the United States: Results from a survey of practices treating Huntington disease patients,” was published in Clinical Parkinsonism & Related Disorders.

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Huntington’s disease is a rare neurodegenerative disorder caused by mutations in the HTT gene. It is characterized by uncontrolled movements, loss of cognitive ability, and psychiatric problems.

“Clinicians who treat [Huntington’s] patients have differing levels of expertise in the management and treatment of [the] disease,” the researchers wrote. Such expertise, they noted, “may vary across practices, meaning that measures of progression and quality care may not be consistently applied.”

Multidisciplinary care ‘inconsistent’ across US

In the U.S., the kind of healthcare Huntington’s patients can access is governed in large part by what is available in their local community.

“No study to date has thoroughly examined US HD [Huntington’s disease] care delivery in a variety of clinic settings by HD specialists and non-specialists,” the researchers wrote.

To better understand the state of Huntington’s care across the U.S., a community of healthcare providers — all working with patients — in 2019 formed a network they dubbed HD-Net. Their ongoing aim is to standardize and improve patient care.

HD-Net is managed by the Huntington Study Group (HSG), and it was launched with funding from Genentech (part of Roche).

Now, scientists at the HSG — including researchers from academic institutions as well as at Genentech and other companies — conducted a survey of Huntington’s care providers in the U.S. The survey was designed to create a better understanding of the landscape of multidisciplinary care across the nation.

Developed by HD-Net members, the survey was sent to 421 practices across the U.S. through several methods; it was completed by 156 respondents (46%). Just over half (about 53%) were from academic practices, while 35% were from private practices and 12% came from the Veterans Administration (VA).

“To our knowledge, this is the largest survey of clinical services for HD ever undertaken in the U.S.” and also the first to involve “large numbers of non-academic and smaller HD practices in its scope,” the researchers wrote.

The clinics, which were evenly spread across the U.S., varied widely in size: 48.7% saw one to 25 patients per year, 28.2% served 26 to 100 individuals, and 23.1% of clinics were treating more than 100 people with Huntington’s.

Across the practices, 63.5% of their lead physicians were trained on movement disorders or directors of Huntington’s Disease Society of America’s centers of excellence. More than half (58.3%) reported that they had a Huntington’s or multidisciplinary care clinic for patients, and 41.7% were actively involved in Huntington’s research.

“Germane” among the study’s findings, according to researchers, was the impact of the COVID-19 pandemic. Most of the practices (70%) did not offer telehealth visits — meeting with a doctor via phone or video call rather than in person — prior to the pandemic. However, 99% reported using telehealth services after the start of COVID-19.

The vast majority of clinics, regardless of the number of patients seen annually, reported monitoring motor function, weight, activities of daily living, behavioral health, and cognitive functioning. These all are generally in line with accepted guidelines.

“The level of assessment and implementation of that monitoring was not, however, scrutinized and may have had different meanings to different size practices,” the team noted.

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Providing specialized care

In turn, only up to 36% of practices said they measured patient and family experience as a care outcome, and only up to one quarter reported being able to seamlessly provide future treatments that required administration directly into the bloodstream (intravenously) or spinal canal.

Just over two-thirds of the clinics (more than 69%) reported that they had difficulty connecting patients with genetic counselors, mental health professionals like social workers or psychiatrists, or care coordinators.

“Dieticians and care coordinators were the functions least likely to be available no matter what the size of the practice,” the researchers wrote.

Also notable were the differences in access to a genetic counselor — an expert in interpreting and communicating genetic testing information. More than two-thirds of academic clinics (67%) reported access to such care. However, less than half of VA clinics (47%) and only one in four nonacademic practices (25%) could provide patients with access to a genetic counselor.

“Practices led by neurologists trained in movement disorders, and higher HD volume practices, tended to be better equipped to provide multi-disciplinary staffing as compared to practices with fewer numbers of HD patients,” the team wrote.

Also, “many practices had insufficient in-house staffing to meet the variety of needs of an HD patient,” they added.

The researchers also noted larger clinics seeing more patients, and those with a dedicated multidisciplinary Huntington’s clinic, were more likely to conduct pre-visit screenings by phone to discuss patients’ symptoms and care needs.

The team concluded care for Huntington’s is “inconsistently applied across the U.S.,” highlighting a need for further research into gaps in care and interventions to help provide more standardized care to patients.