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

Background: 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 a 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 and psychologists). A statement was validated if 80% of the respondents rated it as 7 or more on a Likert scale. Results: We received all three completed 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, and also for healthcare professionals.