hsg logo white

HD InsightsCover Story: EXPANDING CARE FOR HD PATIENTS – Lessons from COVID-19



As social distancing has become the norm during the coronavirus pandemic, Huntington’s disease (HD) patients, already facing the burdens of their disease, have been forced to endure the additional hardships brought on by isolation. Medical professionals have also faced novel challenges as they have adapted their practice patterns in response to clinic closures. The pandemic has forced healthcare workers to reassess the traditional office visit model, and regulators to loosen restrictions on telehealth. 

As two fourth-year medical students and nurse coordinator of a Huntington’s Disease Center of Excellence, we had the valuable opportunity to experiment with this and other new models of delivering care to the HD community. Our experience during the pandemic has shown us that online virtual appointments allow us to deliver care and maintain therapeutic relationships with patients. It is clear to us that telehealth will play a role in caring for HD patients beyond the pandemic, especially as we strive to improve access to multidisciplinary care to the HD community. We are happy to be sharing some of the questions we had going into this initiative and the answers we found after four months of working with patients with HD.

How does the healthcare system promote or prevent physicians from reaching patients, particularly in the context of HD?

HD Centers of Excellence provide comprehensive and multidisciplinary care for Huntington’s patients, but are not accessible to all. HD is a rare disease, and as a consequence, HD centers are few and far between. Outside of Philadelphia, the only HD Center of Excellence in the state of Pennsylvania is at the University of Pittsburgh. These institutions may be accessible to some patients living in major metropolitan areas, but for many living outside of cities, these services are several hours away and functionally out of reach. Even for patients who live within driving distance of an HD center, in-person visits can offer many barriers to care. HD patients become progressively reliant on their families for transportation and day-to-day needs. Many caregivers of HD patients are the sole working members of their families, and it can be challenging for them to take a day off from work or sacrifice a day’s wages to bring a loved one to a clinic. Going to an in-person clinic visit requires both money and time to travel to the city center, to find parking, and to wait in the waiting area before seeing the physician. As such, it becomes an impossible task for many caregivers to bring HD patients to in-person appointments.

Beyond that, as HD is a psychiatric as well as a neurologic illness, both irritability and apathy are prominent features of HD. The difficulties of getting to these appointments can be doubly frustrating for HD patients. These barriers can disincentivize patients from receiving necessary care. As a consequence, many of these patients rely on their local neurologists to manage their HD. Yet given that HD is such a rare disease, very few general neurologists have significant exposure to this patient population. Moreover, general neurology offices cannot offer the breadth of services—such as physical therapy and on-site psychiatry—that are available at HD Centers of Excellence and are necessary for comprehensive patient care. 

Telehealth has offered a solution to many of these problems. Penn’s HD Center of Excellence (based out of Philadelphia) run by Pedro Gonzalez, MD, PhD, Tanya Bardakjian, MS, LCGC, and Jennifer Klapper, MSN, RN, CNS-BC, has been able to care for patients from as far away as Pittsburgh, opening up opportunities for care to new patients. Telehealth has also addressed many of the financial and emotional barriers to care. In-person visits can now be held at the patient’s terms in the location of their choosing, and the time and effort spent traveling has been eliminated. Moreover, we have found that patients have enjoyed seeing their doctors from the comfort of their own homes. Many patients are happier during telehealth appointments, making it easier for us to get a sense of what patients truly look like in their own environments. This, in turn, leads to a much more accurate estimation of functional capacity than could ever be obtained at the office.

How has the impact of COVID-19 on families of patients with HD informed views on telemedicine?

Telehealth has made the substantial barriers patients face to attend even simple outpatient visits evident to us. One patient we met suffered with severe depression as a consequence of their HD. As a result, even a simple task like rising out of bed was a challenge, making it extremely difficult for the patient to attend in-person visits. Once we switched to the telemedicine platform, our patient was able to attend appointments far more consistently. HD-related depression is common in the HD community, and as a result many patients struggle to find the motivation to travel for their appointments. By reducing the “activation energy” needed to attend appointments, telemedicine appointments help even those patients with crippling apathy to get the care they deserve. 

Telemedicine has also shed light on the challenges of family members in bringing their loved-ones to appointments. One patient we cared for struggled to make it to clinic for a new patient visit because their caregiver worked nights. It was not practical for them to drive to the city and spend hours in clinic to be seen by a neurologist, psychiatrist, social worker, and therapist, only to drive straight back to work for the next night shift without any time to sleep. Using telehealth, we were able to shave three hours off this process, allowing them to become an established patient in our clinic and connected with all of the resources we could offer. Although the transition to telehealth at the onset of the pandemic was a challenge, it taught us about barriers to healthcare and has provided us with some of the tools necessary to overcome them.

Should non-physician healthcare professions also be involved in the telehealth movement?

Telehealth increased patient access to non-physician, HD-specialist healthcare providers as well — including neuropsychologists, physical and occupational therapists, and speech language pathologists — through virtual video sessions. Norms are well-established for virtual neuropsychological instruments: these were used with patients who needed neurocognitive testing results for urgent disability applications. Rehabilitative therapy assessment protocols were adapted to the video format and utilized consistently. Practitioners, patients, and family members expressed satisfaction with the video platform and relief that they were still able to be seen by skilled HD professionals and have their HD needs addressed, even during a worldwide pandemic. 

Additional non-physician services for our patients included enhanced online video support groups. The center’s nurse coordinator transitioned the in-person group to a virtual online format in mid-March, with guest speakers that included the HD center’s physician, a neurology nurse specializing in mindfulness/relaxation, the attorney directing the disability program for the Huntington’s Disease Society of America (HDSA), and a sleep medicine psychologist, among others. These specialized speakers from around the country would not have been so easily available to our patients in ordinary circumstances. 

As the pandemic unfolded, health professionals transitioned to working primarily from their home offices, and patients became more and more comfortable with the online meeting format. Increasingly, we recognized the valuable opportunity telehealth offers for broad patient and family access to HD experts. This acceptance of the online format for care extended to acceptance of online supportive counseling as well. Our nurse coordinator reported that many stressed caregivers and struggling patients needed supportive counseling—either in-person or virtually—but had been hesitant to seek it. We found they were more open to accessing psychological support online. Many patients followed through on utilization of free online counseling through the HDSA for the first time, as the telehealth approach to interactions became more familiar.

What can neurologists and other doctors do to reach more populations?

While telemedicine is a reliable alternative to office visits for many patients, there are some individuals and situations that are better addressed by in-person care. As such, it is crucial for neurologists to identify which patient populations would benefit most from telehealth visits versus the traditional model. This is in part an individual decision based on patient preferences, but a data-driven analysis looking at factors such as disease severity, and outcomes such as compliance with scheduled visits and patient satisfaction should guide clinician decision-making. To make these assessments, providers will need to release data on the outcomes of patients receiving care via the telehealth model. 

Health insurance can be a significant barrier to delivering care, and this data can aid in reimbursement changes by demonstrating the efficacy of telemedicine visits as they become standard of care. We at the Penn HD Center of Excellence have recently reported the data from our successful experience with telemedicine during the coronavirus pandemic; it will be crucial for other such centers to publish their own outcomes. Technology is another large barrier to care in the telehealth model. Many manifest HD patients are older or cognitively impaired, and many are cared for by elderly parents who are unfamiliar with new technologies. For these patients, downloading and using an app such as Zoom can be a significant challenge. Penn Medicine has adapted to this challenge by providing a hotline for patients to call in advance of their visits to help them surmount the technology barrier. Such infrastructure would be more difficult to implement in smaller community hospitals and private clinics, but is a necessary step to achieve health parity for all HD patients.

Moreover, it will be essential for insurance companies to recognize that reliable WiFi is a prerequisite to accessing healthcare that many patients do not have access to. As such, they must compensate providers for telephone-only visits, which would expand access to patients without sufficient bandwidth for audio-visual telehealth encounters or access to in-person visits. Local government can also subsidize internet access or allow patients to use smart phones or laptops on loan so that so that they can fully take advantage of telehealth services. Furthermore, conducting telehealth sessions is a skill that is distinct from in-person care, but has not yet been incorporated into many training programs. We anticipate that medical schools will begin to fill this gap. Medical students and residents need to develop the skills to triage patients who are appropriate candidates for telehealth appointments from those who require in-person care. Students also need specialized training on how to conduct a physical exam using a video or audio telehealth format. Moreover, caregivers can be trained to provide certain essential data—such as vital signs—for physicians during appointments, giving these providers crucial objective data.

The Pandemic’s Wake-up Call

HD patients will always be a vulnerable sector of the population that will disproportionately suffer the consequences of tragedies such as the COVID-19 pandemic. In light of this reality, it is incumbent on us as members of the medical community to use the lessons from such events to extend our outreach and bolster the strength of our care to such patients, especially in times of difficulty. Telehealth is one way through which we can not only improve our relationships and follow-through with existing patients. It can also provide the means for accessing members of the HD population who have previously been isolated from care through technological, social, financial, and other barriers.