Transition from pediatric to adult neurology care in Duchenne muscular dystrophy: a national survey of patient and physician experiences
Gulcin Akinci, Eray Ontas, Hacer Durmus, Haluk Topaloglu · 2026
Read Transition from pediatric to adult neurology care in Duchenne muscular dystrophy: a national survey of patient and physician experiences by Gulcin Akinci, Eray Ontas, Hacer Durmus, Haluk Topaloglu (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/PMC13576304.txt.
Description
Gulcin Akinci and three colleagues survey how young people with Duchenne muscular dystrophy move from child to adult neurology care in Turkey, in a 2026 study. This muscle-wasting disease needs lifelong care, yet no national framework guides the handover, though rules require transfer by age 23. Parallel surveys went to doctors and to patients with caregivers.
Sixty-two physicians from 28 cities and 48 patient families replied. Only 17.7 percent of doctors reported a systematic transition programme, and fewer than one in ten described true readiness checks. Joint meetings between child and adult teams were rare. Among patients who had moved, 72.4 percent first heard of transition at 17 or later, and 62.1 percent felt poorly prepared. Both sides ranked a formal protocol, joint consultations, and a named coordinator as top fixes.
Catalog record
| CREATOR | Gulcin Akinci, Eray Ontas, Hacer Durmus, Haluk Topaloglu |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 62299 |
| LICENSE | https://creativecommons.org/publicdomain/zero/1.0 |
| RIGHTS | CC0 |
| SOURCE | Europe PMC |