Apologies for not posting last week (and a little late this week). I’m facing down a deadline for my day job (manuscript for a book that will release next summer), and it had to take priority. I’ve got another week to go before the manuscript is done, so this week’s entry will be brief, but, I think, it will be useful if you have a teen or young adult in your life, with or without XLH, transitioning from a parent’s oversight of medical issues (whether routine or specialized) to the patient taking responsibility for their medical needs.
There’s a new article on transition to adult healthcare in the context of rare bone disorders, “Transition of patients with metabolic bone disease from paediatric to adult healthcare services: current situation and proposals for improvement.” XLH is mentioned specifically in one section, but the article overall takes a more generalized approach, which I think makes a lot of sense. The lived experiences across the various metabolic bone disorders are similar, and the costs of doing separate research/write-ups for each one is undoubtedly more expense in a setting that has no money to spare. Where the topic is something unrelated to the biochemistry and genetic bases, it makes sense to draw insights from across the rare bone disorder community.
Beyond the recognition of the commonalities across bone disorders, what I particularly love about the article is that, like the one I highlighted recently on XLH treatment in general, it’s a collection of expert opinions, looking to the future, acknowledging the unknowns, and extrapolating from their experience to bridge the unknowns. They’re sharing their advice on the best options in situations where there isn’t yet data, and there can’t be data yet, but patients (and their clinicians) still need guidance.
The article is free, and I encourage you to take a look at it (and the other one linked above if you haven’t read it already). Also, if you have or know a teen/YA patient, it would be great if you shared the article with them and/or their pediatrician.
One important point that is made repeatedly in the article is the disconnect between on one hand, a plethora of scholarly articles recommending a well thought-out transition plan, and, on the other hand, the real-world experience of low adoption of any sort of transition plan whatsoever.
I suspect that the lack of adoption isn’t so much intentional on the part of clinicians — I believe that the vast majority of healthcare professionals want to do what’s best for their patients — as it is a matter of not having the necessary tools or the time to acquire those tools that would enable them to do the right thing. If patients can provide them with those tools, by way of articles like this one, written by experts and published in a peer-reviewed journal, it’s likely to benefit both the patients and the clinicians.
And now I’m off to finish editing Saddled With Guilt, the second book in The Bourbon B&B Mysteries. I hope to have another fairly short post next week, but if not, you’ll know that editing gremlins got me.
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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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