French consensus statement on transition of adolescent and young adults with rare pulmonary disease from paediatric to adult care: a Delphi method study

Introduction
Transition of adolescents with chronic diseases to adult care is at risk of health complications and loss of medical follow-up. There is currently no official general consensus specific to rare pulmonary diseases. We aimed at setting up a consensus of experts to establish consensus statement for the transition of patients with rare pulmonary diseases in France.

Methods
We sought consensus using a three-round Delphi method, involving the French rare lung disease network. Statements were submitted to a panel of 38 experts (including nurses, patients, physiotherapists, specialised and general physicians, social workers, psychologists). A statement was validated if 80% of the respondents rated it with 7 or more on a Likert scale.

Results
We received completed all 3 surveys from 37 respondents. We identified 77 key elements that reached consensus, to be included in future guidelines. The main topics discussed correspond to the future guidelines’ structure, as follows: Transition overview and main objectives; Subjects to discuss with the patient during transition; Practical aspects of consultations during transition and transfer; and early follow up in adult care. The main remaining ideas were: 1) to coordinate global care for each patient, 2) to formalise transfer, and 3) to integrate patients’ will and needs into their care in order to support their empowerment.

Conclusion
This study has established key elements to a successful transition for patients with rare pulmonary disease, by a multidisciplinary panel of experts. We achieved consensus on a formalised transition pathway to guarantee a successful transition for patients and their families, but also for healthcare professionals.