A few weeks ago, I attended a meeting at a local-area hospital with pediatric and adult physicians from across disciplines who gather together once per month to discuss transitioning patients with serious chronic illnesses. The session was structured so the presenter, a rheumatologist, discussed cases who were good, bad, and ugly.. in that order of course. This post is meant to share what I learned, and how I compare it to my personal experience transitioning, about which I always speak candidly.
Well-educated parents and only children are good. As an only child of well-educated parents, I can wholeheartedly state that this alone does not a good transition make. In fact, it makes it even more difficult.. see the next section on The Bad.
Parents should support their children and remain involved in the healthcare process at an appropriate level. The question is, appropriate for who? The physician? The patient? The parents themselves? I suppose it depends. While family-centered care is paramount in pediatric care, there is a shift to patient-centered care in adult medicine. I suppose we need to define that gray area between family-centered and patient-centered care for transitioning patients. Family-advised care perhaps?
It’s the treatment’s fault. Patients and parents of patients can become extremely frustrated with ineffective treatments, or treatments that produce inconvenient side-effects. My most recent experiment with a new treatment option has only slightly improved my symptoms while simultaneously intensifying my psoriasis and acne. Needless to say, I’m not the biggest fan of taking it. Don’t get me wrong, I take it regularly and on time. But the frustration of it all is enough to make me conveniently forget to re-order those pre-filled syringes each month. Regardless, this frustration can result in plain non-adherence, or it can result in the birth of an ePatient!@1 year ago