Many American clinics treat infected people Huntington’s disease It reported difficulties accessing needed professionals — such as genetic counselors, social workers and dietitians — to help provide multidisciplinary care for patients with the progressive disorder, according to a survey-based study.
Researchers describe the study, which involved more than 150 clinics across the United States, as “the first of its kind to include non-specialist neurologists and primary care physician practices.”
“We found that [Huntington’s disease] Care has been applied inconsistently and practices of greater volume tend to be better equipped to provide multidisciplinary staff,” the researchers wrote.
“This study adds to the existing literature by providing important information about the organization of clinical care and services for [Huntington’s] patients in the United States.
the study, “Assessing the state of care for Huntington’s disease in the United States: results of a survey of practices treating patients with Huntington’s disease.“in Clinical Parkinson’s and Related Disorders.
Huntington’s disease is a rare neurodegenerative disorder it causes by mutations in HTT gene. It is characterized by uncontrolled movements, loss of cognitive ability, and psychological problems.
“Doctors who treat [Huntington’s] Patients have different levels of experience in managing and treating [the] disease,” the researchers wrote. They noted that this experience “may vary across practices, which means that measures of progression and quality care may not be consistently applied.”
Multidisciplinary care ‘inconsistent’ across the US
In the United States, the type of health care that Huntington’s patients can access is largely governed by what is available in their local community.
No study to date has thoroughly examined US HD [Huntington’s disease] The researchers wrote that care was provided in a variety of clinic settings by both HD professionals and non-specialists.
To better understand the state of Huntington’s care across the United States, in 2019 a community of health care providers — all working with patients — formed a network they called HD-Net. Their ongoing goal is to standardize and improve patient care.
HD-Net is managed by Huntington Study Group (HSG), and launched with funding from Genentech (part of rush).
Now, scientists at HSG — including researchers from academic institutions as well as at Genentech and other companies — have surveyed Huntington’s caregivers in the US. The survey is designed to create a better understanding of the multidisciplinary care landscape across the country.
Developed by HD-Net members, the survey was sent to 421 practices across the United States through several methods; Completed by 156 respondents (46%). Just over half (about 53%) were from academic practices, while 35% were from private clinics and 12% were from the Veterans Administration (VA).
“To our knowledge, this is the largest clinical services survey of HD ever conducted in the United States” and also the first survey to include “a significant number of non-academic, high-accuracy practices within its scope,” the researchers wrote.
Clinics, which were evenly spread across the United States, varied widely in size: 48.7% saw 1 to 25 patients per year, 28.2% served 26 to 100 individuals, and 23.1% of clinics treated more than 100 people Huntington’s disease.
Across clinics, 63.5% of principal physicians were trained in movement disorders or their managers American Huntington’s Disease AssociationCenters of Excellence. More than half (58.3%) reported having a Huntington Clinic or a multidisciplinary patient care clinic, and 41.7% were actively involved in Huntington’s research.
Among the findings of the study, according to the researchers, is the impact of the COVID-19 pandemic. Most practices (70%) did not provide telehealth visits – meeting a doctor by phone or video call rather than in person – prior to the pandemic. However, 99% reported using telehealth services after the onset of COVID-19.
The vast majority of clinics, regardless of the number of patients seen annually, reported monitoring of motor function, weight, activities of daily living, behavioral health, and cognitive performance. These are all generally in line with accepted guidelines.
The team noted that “the level of assessment and implementation of this monitoring has not been scrutinized and may have different meanings for different scale practices.”
Providing specialized care
In contrast, only up to 36% of practices said they measured patient and family experience as an outcome of care, and only up to a quarter reported being able to seamlessly deliver future treatments requiring administration directly into the bloodstream (intravenously) or the spinal canal.
Just over two thirds of clinics (over 69%) reported having difficulty connecting patients with genetic counselors or mental health professionals such as social workers, psychiatrists or care coordinators.
“Nutritionists and care coordinators are the jobs least likely to exist regardless of practice size,” the researchers wrote.
Also of note are differences in access to a genetic counselor – an expert in interpreting and transmitting genetic testing information. More than two thirds (67%) of academic clinics reported receiving such care. However, less than half of VA clinics (47%) and only one in four non-academic practices (25%) can provide patients with access to a genetic counselor.
“Practices led by neurologists trained in movement disorders, and higher volume practices for HD tend to be better equipped to provide multidisciplinary staff than practices with fewer HD patients,” the team wrote.
They also added, “Many practices did not have enough in-house staffing to meet the variety of HD patient needs.”
The researchers also noted that larger clinics with more patients, and those with the Huntington Multidisciplinary Clinic, were more likely to have pre-visit examinations by phone to discuss patients’ symptoms and care needs.
The team concluded that Huntington’s care is “inconsistently applied across the United States,” highlighting the need for further research into gaps in care and interventions to help provide more standardized care to patients.