Swedish national cohort of children living with long-term respiratory support (DISCOVERY-P): cohort profile

Abstract

Purpose: Children living with respiratory support rely on medical technology, either fully or partially, throughout the day to meet their breathing requirements. Although children and young people living with respiratory support at home undergo long-term treatments and make extensive use of health and social care services, there is a notable absence of comprehensive outcome data on this group. The establishment of the first nationwide Course of DISease reported to the Swedish CPAP Oxygen and VEntilator RegistrY paediatrics cohort aims to investigate the disease trajectory, clinical and socioeconomic risk factors influencing incident illness, hospitalisation risk and mortality among children living with respiratory support.

Participants: Data on patients aged 0-18 years reported to the Swedish National Registry for Respiratory Failure and Sleep Apnoea (Swedevox) 1 January 2015 to 29 July 2021 were merged with seven quality or governmental registries, the National Quality Registry for Intensive Care, the National Medical Birth Register, the Swedish Cause of Death Registry, the Registry for Interventions under the Act on Support and Service to Certain Disabled Persons, the Swedish National Patient Registry and with socioeconomic data from Total Population Registry and Longitudinal Integrated Database for health insurance and labour market studies.

Findings to date: The cohort includes 716 children, 59% male, who began respiratory support at an average age of 6.4 years (SD 5.4). Among them, 28% use continuous positive airway pressure, 64% long-term mechanical ventilation (LTMV), 3% high-flow oxygen therapy (HFOT) and 5% other methods. Respiratory support is mostly used at night, but many LTMV (54%) and HFOT (81%) users need daytime aid. 77% of LTMV users rely on mask connection, differing from international data.

Future plans: Future projects include exploring the impact of socioeconomic factors on hospitalisation rates and mortality. The dataset is due for an update in 2026.

Keywords: Adolescent; Child; Chronic Disease; RESPIRATORY MEDICINE (see Thoracic Medicine); Retrospective Studies; Risk Factors.

Figure 1. Overview of the eight registries contributing data to the Course of DISease reported to the Swedish CPAP Oxygen and VEntilator RegistrY paediatrics (DISCOVERY-P) cohort. Each registry is represented as a separate grey box, converging into a central box that represents the cohort. The cohort includes participant numbers categorised by treatment type. CPAP, continuous positive airway pressure; LTMV, long-term mechanical ventilation; HFOT, long-term high flow oxygen therapy.