Registry-based surveillance of paediatric home respiratory support in Switzerland: methodology and initial findings.

Introduction The use of long-term home respiratory support in children has increased dramatically worldwide in recent decades. However, no national data are available in Switzerland since the last survey in 2001. In 2022, the national prospective Swiss Paediatric Home Respiratory Support (SwissPedHRS) registry was created on behalf of the Swiss Society of Paediatric Pulmonology, involving all centres caring for children with home respiratory support. Its main goal is to prospectively describe and study the population of children requiring home respiratory support in Switzerland. This first publication aims to present the SwissPedHRS methodology and describe the current paediatric population with home respiratory support in Switzerland and its evolution from 2001 to 2023.Methods Inclusion criteria in the registry are age <18 years, use of home respiratory support for ≥3 months and follow-up in Switzerland. The seven paediatric centres caring for patients with long-term home respiratory support in Switzerland participated, asking all their patients who met the criteria to participate. Each centre designated a local person to enter data collected from medical files into a dedicated database. Inclusions began in April 2022. Data from all patients included during the first year of the registry (i.e. until March 2023) were extracted, and the following data were analysed: sex; age at inclusion; underlying pathology; age, place, and context of home respiratory support initiation; decisive test leading to home respiratory support initiation; breathing disorder mechanism; and type of home respiratory support.Results The registry included 146 patients, and the prevalence of children with home respiratory support in Switzerland was estimated at 11.9/100,000 children (59% boys, 41% girls). The most common underlying medical conditions were related to neuro-muscular (38%) and central nervous system (25%) diseases. The home respiratory support type was bilevel positive airway pressure (BPAP) for 67% of patients, continuous positive airway pressure (CPAP) for 32%, and high flow nasal cannula for 1%. Respiratory support was delivered invasively (via tracheostomy) for 14%. The median age at home respiratory support initiation was 6.6 years. Home respiratory support was initiated electively in 68% of patients and in acute situations (weaning failure after an acute respiratory exacerbation, neonatal hospitalisation, or surgery) in 32%. The place of initiation was either an outpatient clinic (19%), standard care unit (15%) or intensive/intermediate care unit (66%).Conclusion SwissPedHRS is the first national prospective registry dedicated to children with home respiratory support. It is a valuable resource for improving knowledge and, therefore, the management of children with home respiratory support. Analysis of the first year's data in the SwissPedHRS registry showed a sixfold increase in prevalence since 2001. It also highlighted a larger spectrum of underlying medical conditions and types of sleep-disordered breathing leading to home respiratory support and important changes in home respiratory support modalities, with decreased invasive and increased non-invasive respiratory support and decreased BPAP and increased CPAP ventilation.