I love telehealth and think it offers the potential for more rare-disorder patients to get better care from clinicians who actually understand and have significant experience with their disorder!
I’m not alone in believing that, as shown by the results of a survey by Rare Patient Voice last year on the topic of telehealth.
They collected feedback via two iterations of the survey, one in July 2020 (shortly after the pandemic began, when telehealth was new to most patients/caregivers) and then again in February 2022. The results were about what I’d expect: survey respondents liked telehealth a lot (rated 8.6 out of 10), especially because of its convenience (less driving/travel, no dealing with bad weather, etc.), and most respondents expected to continue with telehealth after the pandemic.
Several people, including me, mentioned what I see as the life-changing benefit of telehealth: being able to see specialists who are outside of a reasonable commuting distance. That’s absolutely critical for XLH patients, since there are so few truly qualified specialists for treating XLH in general (and even fewer who can competently treat XLH adults). Telehealth allows patients to consult with experts who have extensive experience in XLH, without having to travel hundreds of miles multiple times a year, and without having to settle for a clinician whose only experience with XLH is reading about it in med school, and who only superficially has the right qualifications to treat it by virtue of being an endocrinologist.
One respondent mentioned something I hadn’t thought of that could improve clinicians’ perceptions of our disorders — she was able to go ahead with an appointment she would have rescheduled if it was in-person, because her disorder’s symptoms were particularly bad at the time and would have prevented her from taking the long ride for an in-person visit. But because her appointment was a virtual one, the survey respondent didn’t have to delay her appointment and treatment, and, even more important in the long run, the clinician was able to see just how bad she was feeling, something that’s often hidden, since we tend to try to look and act our best during in-person appointments.
I think a lot of us do that, putting on a brave front at the clinician’s office, so even when we’re talking about pain and fatigue, we’re also trying to do it in a calm and unemotional manner, some of us even using self-deprecating humor to minimize how bad we feel, and rescheduling if we feel particularly terrible, so the health care provider never really sees us at our worst. I’ve seen the results of how effective we are in putting on a facade in my own medical records. In a number of them, the clinician has recorded that “the patient is no apparent distress,” even when I KNOW I was hurting, because I’d had to drive two hours to the appointment and then wait in uncomfortable chairs for another hour. There’s no way I did all of that without being in significant pain. But I’m so used to the pain and trying not to show it, that it wasn’t obvious to the clinician.
Bottom line: telehealth is perfect, but it may offer benefits beyond the obvious ones related to convenience. There are some things that can only be dealt with in person, and technology can be glitchy and annoying and impersonal. But overall, I think telehealth is an excellent option for many rare-disorder patients/caregivers. It opens up access to qualified clinicians and reduces the challenges of travel and the related pain/stress for people who are already in pain and stressed by their health! Enabling clinicians to see the full range of our challenges may be a nice bonus, helping them to understand that XLH truly is a whole-body, whole-life, whole-family disorder.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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