Young XLH Patients-Reported Experience with a Supportive Care Program.
Anya RothenbuhlerIva GueorguievaLydia Lichtenberger-GeslinChristelle AudrainSylvie SoskinCandace BensignorSylvie RossignolAurélia Bertholet-ThomasLorelei NaudeauJustine BacchettaAgnès LinglartPublished in: Patient preference and adherence (2023)
Our findings indicate that this program might improve the QOL for patients with chronic conditions such as XLH through patient education, therapy adherence, motivational interviews, and frequent follow-up. It links the home environment and overall illness management, bringing patients, families, and caregivers together.