By Kevin Gregory, PMP
With its classification as a rare disease, there is a strong possibility that most healthcare providers have never treated patients affected by Huntington disease (HD). About 30,000 people in the United States have HD and another 200,000 are at risk of developing the condition. This means that in total, only 0.07% of the entire population of the U.S. has or is at risk for developing the symptoms of HD.
So, it is not uncommon for a general practitioner or family medicine practice to have little or no experience with HD beyond what was briefly covered in school or residency. In the same way, caregivers can be at just as much of a disadvantage. While the math itself reduces the likelihood of treating or caring for a patient with HD, other factors – such as geography, population density, stigma, and the resemblance with other symptoms such as Parkinson’s, Alzheimer’s, or ALS – make HD challenging to identify and deal with.
A New Educational Program
Enter the Huntington Study Group (HSG) and the CME4HD educational program. Several years ago, the HSG recognized the gap between educational foundation and practical experience in HD. An effort was launched to develop a professional education curriculum through which providers could attend and learn from experts in the field. Mary Edmondson, chair of the HSG Provider Education Committee, credits Lavonne Goodman with the foresight to create CME4HD to help educate community-based colleagues.
“People with HD need a variety of care providers across their life span,” explains Edmondson. “They need more than just a HD doctor; they need a team of different providers, including primary and acute care specialists. Ancillary providers like nurses, social workers, physical therapists, speech therapists, and behavioral health therapists make a big difference in the lives of patients and family members. It’s hard to find knowledgeable care providers for patients outside specialty HD centers at tertiary care centers.”
In 2012, the first in-person CME4HD training session was delivered at the Huntington Study Group’s annual meeting held that year in Seattle, Washington. By attending the day-long accredited session on the Saturday following the general meeting agenda, providers could earn continuing education credits while gaining a deeper understanding of the course and symptoms of Huntington disease.
Edmondson says that it is also important for care providers to be aware that there is much that can be done to ease the burden on HD patients. “The core message that CME4HD offers is that Huntington disease is a highly treatable disease. Although we search for treatments to modify the course of the disease, the goal at HSG is to seek meaningful treatments, including treatment of current symptoms.”
The CME4HD program continued with that approach for the next four years, with HSG faculty members teaching attendees and any interested local providers in the city where the meeting was held. However, to further expand the reach of CME4HD, the curriculum was adapted for presentation in an online, self-paced format beginning in February 2018. By hosting the content online, learners can now take the same training anywhere, at any time. The types of credits learners can earn is also expanded, and currently includes CME, CNE, and IPCE credits for 2019.
In order to make CME4HD work in an online delivery setting, the HSG faculty presenters are recorded on camera presenting their course content in its entirety. But instead of a large classroom audience, they are speaking directly to the learner through the lens of the camera. In the initial 2018 CME4HD Online launch, a total of five courses were offered for credit. In the 2019 update, which launched on February 1st of this year, three additional courses were added, but the duration of each course was shortened to a TED Talks style of 20-30 minutes in length.
“This program disseminates important educational, practical information about a rare disease that can be intimidating to treat for those unfamiliar with the disease,” says Erin Furr-Stimming, a CME4HD faculty presenter and HSG investigator at the University of Texas Health Science Center at Houston. “The content hopefully adds value to the clinician’s knowledge base and reframes some older concepts, for example, considering functional independence and the importance of a multidimensional diagnosis.”
This year, CME4HD learners also were treated to the incorporation of real-world examples and references from the documentary The Inheritance, which chronicles the story of Bridget Lyon and her family’s history with HD. As an added bonus, anyone that registers for CME4HD Online has access to watch the full-length documentary at their leisure.
“Reducing the burden of symptoms and improving quality of life makes a difference not only for HD gene expansion carriers but the entire family living with HD, including caregivers, at-risk children, and family members,” says Edmondson, who is extremely grateful for Bridget’s desire to share her family’s experiences with the HD community. “An often-overlooked fact about HD is that the mental health aspects of the disease are often the hardest aspect of the disease. Our secondary goal with CME4HD is to share practical interventions that non-mental health practitioners can implement with their patients.”
Early returns on the 2019 update to CME4HD have been very positive. In one month following announcement of the launch date, 87 new users had signed up for accounts – a 15% increase in total registered learners. In 2018, CME4HD learners completed a total of 1,070 courses. After the first month, the Huntington Study Group has had learners earn credits on nearly 150 courses, already matching 13% on the prior year’s total.
Jamie Hatcher-Martin, assistant professor of neurology at Emory University School of Medicine and fellow CME4HD faculty presenter added, “I appreciated discussing actionable topics that can help in every day care. I think my topic may have included subjects that many providers do not know as much about [end of life concerns, options for managing patients with advanced disease]. I really enjoyed interacting with the other faculty.”
One of the best things about CME4HD Online is that it is completely free. And while the content is specifically geared as training for healthcare providers, there are definitely benefits that caregivers and family members can gain from the material.
As Furr-Stimming mentions, “This is an easy, readily accessible mechanism to hear from care providers that are familiar with HD about the challenges that HD families face throughout the lifecycle of HD. The program is excellent because it addresses clinically relevant challenges that care providers frequently face when caring for individuals with HD.”
An independent educational grant was provided by Teva Pharmaceuticals in 2018 to help develop and deliver the most recent version of the CME4HD curriculum. If you are interested in taking the online courses, information and links to register can be found on the Huntington Study Group’s website at https://huntingtonstudygroup.org/cme4hd-online/.
Kevin Gregory is Director of Education, Communication, and Outreach at the Huntington Study Group.