Abstract
Interstitial lung diseases (ILD) are a heterogeneous group of rare diffuse diseases affecting the lung parenchyma in children and adults. Childhood interstitial lung diseases (chILD) are often diagnosed at very young age, affect the developing lung, and can have different presentations and prognosis compared to adult forms of these diseases. Also, chILD in many cases may apparently remit, and have a better response to therapy and better prognosis than adult ILD. Many affected children will reach adulthood with minimal activity or clinical remission of the disease. They need continuing care and follow-up from childhood to adulthood if the disease persists and progresses over time but also if they are asymptomatic and in full remission. Therefore, for every chILD patient an active transition process from paediatric to adult care should be guaranteed. This ERS statement provides a review of the literature and current practice concerning transition of care in chILD. It draws on work in existing transition care programs in other chronic respiratory diseases, disease-overarching transition of care programs, evidence on the impact of these programs on clinical outcomes, current evidence regarding long-term remission of chILD as well as the lack of harmonisation between the current adult ILD and chILD classifications impacting on transition of care. While the transition system is well established in several chronic diseases, such as cystic fibrosis or diabetes mellitus, we could not find sufficient published evidence on transition systems in chILD. This statement summarises current knowledge but cannot yet provide evidence-based recommendations for clinical practice.
Footnotes
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Conflicts of Interest: There are no conflicts of interest
Conflict of interest: Petr Pohunek reports consulting fees, travel support and advisory board participation with AstraZeneca, GlaxoSmithKline; lecture honoraria from GlaxoSmithKline, AstraZeneca, Chiesi, AstraZeneca; outside the submitted work.
Conflict of interest: Effrosyni Manali reports lecture honoraria from Boehringer Ingelheim, Elpen, Demo, CSL Behring, Hoffman La Roche; travel support from Boehringer Ingelheim, Hoffman La Roche, Elpen, CSL Behring; outside the submitted work.
Conflict of interest: Felix Chua reports lecture honoraria and travel support from Boehringer-Ingelheim; advisory board participation with Boehringer-Ingelheim, National Institute for Care Excellence (NICE), UK; outside the submitted work.
Conflict of interest: Ralph Epaud reports consulting fees from Astra Zeneca; lecture honoraria from GSK, Astra Zeneca, Menarini; travel support from GSK, Astra Zeneca; advisory board participation with Astra Zeneca, Novartis; outside the submitted work.
Conflict of interest: Carlee Gilbert reports a leadership role with ChILD Lung Foundation; outside the submitted work.
Conflict of interest: Matthias Griese reports grants, lecture honoraria, advisory board participation and adjudication board participation with Böhringer Ingelheim; outside the submitted work.
Conflict of interest: Václav Koucký reports advisory board participation with Boehringer Ingelheim; outside the submitted work.
Conflict of interest: Nadia Nathan reports grants from Million Dollar Bike Ride project (for Neuroendocrine Cell Hyperplasia of Infancy: Genetic basis of neuroendocrine cell hyperplasia of infancy), Chancellerie des Universités: Legs Poix (Molecular and phenotypic characterisation of interstitial lung disease n°2022000594), RespiFIL (development of an e-learning module for CT-scan in childhood interstitial lung diseases and development of an online platform for the collection of quality of life and transition questionnaires in rare lung disease); lecture honoraria from La lettre du Pneumologue; travel support from ERS; outside the submitted work.
Conflict of interest: Spyridon Papiris reports lecture honoraria from Boehringer Ingelheim, Elpen, Demo, Pfizer, Hoffman La Roche; travel support from Boehringer Ingelheim, Elpen;
Conflict of interest: Suzanne Terheggen-Lagro reports advisory board participation with Roche; outside the submitted work.
Conflict of interest: All other authors have nothing to disclose.
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- Received December 1, 2023.
- Accepted April 18, 2024.
- Copyright ©The authors 2024. For reproduction rights and permissions contact permissions{at}ersnet.org
