Enora Le Roux1, Hélène Mellerio1, Paul Jacquin2, Aurélie Bourmaud1,3, Sophie Guilmin-Crépon1,3, Albert Faye1,4, Sophie Matheron5,6, Rym Boulkedid1,3, Corinne Alberti1,3. 1. Unité ECEVE UMR 1123, Université Paris Diderot-Sorbonne Paris Cité, INSERM, Paris, France. 2. Service de Médecine de l'Adolescent, Assistance Publique-Hôpitaux de Paris, Hôpital Robert Debré, Paris, France. 3. CIC-EC, Unité INSERM CIC 1426, Assistance Publique-Hôpitaux de Paris, Hôpital Robert Debré, Paris, France. 4. Service de Pédiatrie Générale, Assistance Publique-Hôpitaux de Paris, Hôpital Robert Debré, Paris, France. 5. Unité IAME UMR 1137, Université Paris Diderot-Sorbonne Paris Cité, INSERM, Paris, France. 6. Service des Maladies Infectieuses et Tropicales, Assistance Publique-Hôpitaux de Paris, Hôpital Bichat, Paris, France.
Abstract
BACKGROUND: The last 20 years have seen many attempts to improve transition to adult healthcare for adolescents with chronic disease, but there is currently no established consensus on generic practices. Our goal was to identify relevant and pragmatic guidelines for transition practice for each step of this process (before, during and after transfer), applicable to a wide range of chronic illnesses and health services, via a participatory approach involving all the key stakeholders. METHODS: We conducted interviews and a literature review to elaborate a questionnaire for use in an online 2-round Delphi survey. The survey panel included 36 French health and social professionals from different care settings, and young adults and parents with an experience of healthcare transition related to all types of chronic disease. RESULTS: The survey consensus identified 19 items on feasibility and relevance criteria, which form the guidelines. It is composed of five practices to be adopted during preparation in paediatrics, seven practices in the active phase of transition and seven in adult care. Two guidelines achieved complete consensus: having a longer consultation for the first appointment with the adult doctor, and keeping the same adult doctor throughout follow-up. A further 36 items met the criterion of relevance, but were deemed unfeasible. CONCLUSIONS: Taking into account all stakeholder views and the real-world applicability of care practices enabled us to elaborate consensual guidelines whose implementation requires no additional health service resources.
BACKGROUND: The last 20 years have seen many attempts to improve transition to adult healthcare for adolescents with chronic disease, but there is currently no established consensus on generic practices. Our goal was to identify relevant and pragmatic guidelines for transition practice for each step of this process (before, during and after transfer), applicable to a wide range of chronic illnesses and health services, via a participatory approach involving all the key stakeholders. METHODS: We conducted interviews and a literature review to elaborate a questionnaire for use in an online 2-round Delphi survey. The survey panel included 36 French health and social professionals from different care settings, and young adults and parents with an experience of healthcare transition related to all types of chronic disease. RESULTS: The survey consensus identified 19 items on feasibility and relevance criteria, which form the guidelines. It is composed of five practices to be adopted during preparation in paediatrics, seven practices in the active phase of transition and seven in adult care. Two guidelines achieved complete consensus: having a longer consultation for the first appointment with the adult doctor, and keeping the same adult doctor throughout follow-up. A further 36 items met the criterion of relevance, but were deemed unfeasible. CONCLUSIONS: Taking into account all stakeholder views and the real-world applicability of care practices enabled us to elaborate consensual guidelines whose implementation requires no additional health service resources.
Authors: Brian C Zanoni; Moherndran Archary; Thobekile Sibaya; Nicholas Musinguzi; Mary E Kelley; Shauna McManus; Jessica E Haberer Journal: J Int AIDS Soc Date: 2021-07 Impact factor: 5.396