There’s a lot of good information in this new article, similar to articles published by clinicians in other parts of the world, “X-Linked Hypophosphatemia Management in Children: An International
2 Working Group Clinical Practice Guideline,” and the authors a veritable who’s who of North American experts in XLH.
Still, I hate to say it, but it shows a total disregard for patient (or in this case, mainly parental/caretaker) input. I couldn’t find a single non-clinician/researcher listed as an author (unlike in other publications that more definitively included patient input).
The main reference to patient input is: “Patients’ values and preferences were taken into consideration regarding recommendations.” The footnote citation refers to an article that basically mandates considering patients’ values and preferences, rather than, yanno, anything to indicate that there was an opportunity for patients to express their values and preferences. There’s also a reference to “patient partners” in the methodology section, suggesting that unspecified “patient partners” were included in some discussions, but they’re not named, even by affiliation.
Look, I have great respect for the authors on this paper whom I’ve met personally, but they’re still not patients. They can pass on what patients have told them — aka “inadmissible hearsay” in legal terms — but they haven’t lived it themselves. There’s a difference between firsthand and secondhand information about the lived experience. Among other issues, in my experience, patients do not share the entirety of their experience with their clinicians. There just isn’t time! And a lot of us have learned to not mention things that sound crazy, or that we know there’s no treatment for. It’s a waste of time, and, well, we’d rather not be labeled crazy or drug-seeking.
I’m NOT saying any of these authors would be unsympathetic or doubting. I’m just saying that, over the years, I, at least, have learned to edit what I tell my clinicians, because I’ve been disbelieved and treated like a crazy/stupid person so often that I’ve come to expect it. And I just don’t have the energy to deal with it unless the issue is an emergency. That habit of editing my experience carries over to interactions even with clinicians I trust.
Bottom line: if there was no opportunity to gather DIRECT patient/caretaker feedback (and that includes pediatric patients old enough to express their opinion on medical issues), then simply saying that you took patients’ values and preferences into consideration is not credible. If your only evidence for a statement that you took an action is “this guideline says we have to consider it,” then you have no evidence that you took an action.
Come on, clinicians. Patients need you to be better than this. Listen to us DIRECTLY, not as translated by a clinician.
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Please note that the author is a well-read (and cranky) patient, not a doctor, and is not offering medical or legal advice.
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