Too often, members of the medical community forget to consider the patient’s point of view when describing or prescribing a treatment or regimen. What I just realized is that sometimes even I can forget, and I’m always advocating for health care providers and researchers to #ListenToPatients.
Recently, I wrote about a study that compared surgical intervention to the use of braces for straightening XLH kids’ legs, and I accepted at face value the authors’ implicit assumption that braces are “less invasive” than surgery. But a reader pointed out that while that may be true from the clinician’s perspective and in a technical/jargon sort of way (the braces don’t require “invading” the body physically), it is not necessarily true from the patient’s perspective, using a more holistic definition of invasive to include the effects on the patient’s quality of life.
Orthopedic surgery for XLH can, of course, adversely affect the patient’s quality of life, with pain and the need for physical therapy and limited mobility. But with modern surgical, and done appropriately by a true expert, the adverse effects will last a matter of weeks to months, and then it’s done (subject to followup, which might involve additional surgery/recuperation, but again, it’s for a limited period of time). Bracing in the XLH context, however, can affect the patient for years, possibly an entire childhood, requiring frequent medical appointments and adjustments (with potential ongoing costs) over the years as the child grows, as well as causing challenges for engaging in a normal childhood (i.e., painting a target on the patient for teasing/bullying, and limiting physical activities with other kids).
I really shouldn’t have taken the authors’ assumption of the relative “invasiveness” at face value, and should have considered it more from the patient’s point of view, taking into consideration all of the effects, not just the direct, visible/quantifiable physical effects.
This lack of consideration for the patient’s whole experience is similar to a pre-burosumab treatment regimen I once heard a clinician recommend, which involved something like ten different daily pill doses (phosphorus, calcitriol, calcium). Not only were there a LOT of pills, but they were supposed to be taken at rigid intervals that required the child to leave class multiple times a day, and then being roused from sleep in the middle of the night to take one of the doses. There were other restrictions too (relating to when the child could/couldn’t eat certain foods in relation to when the pills were taken), although I forget the details. What really bugged me about this regimen wasn’t the regimen itself so much as the clinician’s disdain for the challenges that the patient (and caregivers) would encounter while trying to take meds every couple of hours on average, then blaming the patient/parents for not having the resources or ability to follow such an intensive schedule for years on end. From the clinician’s perspective, all the patient/parents had to do was essentially organize their entire lives (and the lives of any siblings of the patient, whether or not they had XLH) around this insane regimen, and the patient would be fine. (Which is also a false assumption, because phos/calcitriol is not even marginally effective for all patients, but that’s a separate issue.) If the clinician had been more receptive to the patient experience, they would have understood that a modified, less complicated regimen that the patient/parents could actually maintain over the long term was better than the “perfect” regimen that the patient/parents could not maintain. The bulk of the “blame” was not on the patient for their inability to carry out an impossible regimen, but on the clinician’s failure to acknowledge and accommodate the patient’s limitations.
So I really should have considered whether the authors of the article on bracing had considered not only their own point of view as clinicians, but also the patient’s/parents’ point of view. In my defense, I never had any orthopedic surgery, which may be why I find the idea of it so scary, and was quick to buy into the attitude of “anything’s better than surgery.” I did wear braces for a few years when I was very young (I think I was somewhere between five and ten years old, but only for a year or two), and it was relatively non-invasive, since I only wore them at night. It was similar to what is sometimes used today for club foot, basically a pair of rigid shoes affixed to a bar, which forced my feet to toe-out instead of toe-in. So the bracing I had was, in fact, mostly non-invasive. At least physically, and in terms of social interactions with my peers, since I didn’t wear them during the day. They weren’t entirely without effects on my quality of life though. I remember vividly how much I hated them, mostly because they forced me to sleep on my back, which gave me insomnia. And I remember the joy I felt when, by way of special compensation whenever I had a cold and needed extra rest, I was allowed to not wear the braces for one or two nights and could sleep on my side! To this day, I have trouble falling asleep while lying on my back, and if I do manage to sleep, I have horrific nightmares.
So, yes, I should have known better than to accept the journal article authors’ implicit breezy assumption that bracing has virtually no effect on the patient, and “avoiding surgery” is necessarily a benefit when considering one treatment over another. I’ll try to do better in the future. Toward that end, I’d love to hear from any XLHers who wore braces as a kid, what kind they were, how long you wore them, and just generally how they affected your quality of life.
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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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