French Guidelines on transition of adolescents with rare lung disease from pediatric to adult healthcare

<bold>Background:</bold> Transition of adolescents with chronic diseases to adult care is a period at risk of health complications and loss of medical follow-up. There is currently no official consensus specific to rare lung diseases. We aimed to set up a consensus of experts to establish guidelines concerning transition of patients with rare lung disease in France. <bold>Methods:</bold> We sought consensus using a three-round Delphi method, involving the French rare lung disease network. Statements were submitted to a panel formed by 38 experts (including nurses, patients, physiotherapists, specialized and general physicians, social worker, psychologist). A statement was validated if 80% of the respondents rated it with 7 or more on a Lickert scale. <bold>Results:</bold> We received completed all 3 surveys from 37 respondents. We identified 78 key elements that reached consensus, to be included in future guidelines. Main topics discussed correspond to the future guidelines’ structure, as followed: Transition overview and main objectives; Subjects to discuss with the patient during transition; Practical aspects of pediatric consultations during transition, transfer, and early follow up in adult care. The main remaining ideas were: 1) to coordinate global care for each patient, 2) to formalize transfer, and 3) to integrate patients’ will and needs into their care in order to support their empowerment. <bold>Conclusion:</bold> This study has established key elements to a successful transition for patients with rare lung disease, by a multidisciplinary panel of experts. We achieved consensus on a formalized transition pathway to guarantee a successful transition for patients and their families, but also for healthcare professionals.