Abstract

Objectives We aimed to assess health-related quality of life (HRQOL) in a cohort of very preterm born children and adolescents (aged 5-16), and to compare it with their fullterm born siblings and the general population. We also explored correlates of HRQOL among the very preterm born.

Methods Cross-sectional survey. Primary outcome was KINDL total score (0 worst - 100 best). Linear mixed models accounted for family unit. Secondary analysis compared very preterm born children to another cohort of healthy children from the same time period. A classification tree analysis explored potential correlates of HRQOL.

Results On average, preterm children had a 2.1 point lower KINDL total score than fullterm sibling controls (95% CI -3.6 to -0.6). Compared to population controls, very preterm born children had a 1.4 point higher KINDL score (0.2 to 2.5). Chronic health conditions, age, and respiratory symptoms affecting daily life were key correlates of HRQOL among very preterm born children.

Conclusions Very preterm birth in children and adolescents was not associated with a relevant reduction in HRQOL compared to their fullterm born peers. However, lower HRQOL was likely explained by other factors, such as older age, the presence of chronic health conditions, but also by current respiratory symptoms that may be modifiable. A comprehensive assessment of the pulmonary sequelae provoking symptoms and interventions targeting medical management, physical activity and exercise capacity of preterm born children and adolescents may help to reduce respiratory symptoms and its potential influence on HRQOL needs to be investigated further.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

The FLiP study received funding from LUNGE ZUERICH (#2020-06). Giancarlo Natalucci received funding from the Family Larsson-Rosenquist Foundation. We also acknowledge the support of the European Respiratory Society Fellowship Long-Term Research Fellowship 2020 (for Gabriela P Peralta). Ciao Corona is part of Corona Immunitas research network, coordinated by the Swiss School of Public Health (SSPH+), and funded by fundraising of SSPH+ that includes funds of the Swiss Federal Office of Public Health and private funders (ethical guidelines for funding stated by SSPH+ will be respected), by funds of the Cantons of Switzerland (Vaud, Zurich, and Basel) and by institutional funds of the Universities. Additional funding, specific to Ciao Corona, was received from the University of Zurich Foundation.

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

FLiP: The study was approved by the Ethics Committee of the Canton of Zurich, Switzerland (2020--02396). Filling out the online survey was considered as providing consent. Ciao Corona: The Ciao Corona study was approved by the Ethics Committee of the Canton of Zurich, Switzerland (2020-01336). All participants provided written informed consent before being enrolled in the study.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Footnotes

Funding/Support: The FLiP study received funding from LUNGE ZÜRICH (#2020–06). Giancarlo Natalucci received funding from the Family Larsson-Rosenquist Foundation. We also acknowledge the support of the European Respiratory Society Fellowship Long-Term Research Fellowship 2020 (for Gabriela P Peralta). Ciao Corona is part of Corona Immunitas research network, coordinated by the Swiss School of Public Health (SSPH+), and funded by fundraising of SSPH+ that includes funds of the Swiss Federal Office of Public Health and private funders (ethical guidelines for funding stated by SSPH+ will be respected), by funds of the Cantons of Switzerland (Vaud, Zurich, and Basel) and by institutional funds of the Universities. Additional funding, specific to Ciao Corona, was received from the University of Zurich Foundation.

Role of Funder/Sponsor (if any): The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Clinical Trial Registration (if any): Ciao Corona was registered at ClinicalTrials.gov: NCT04448717.

Data Sharing Statement: Deidentified individual participant data (including data dictionaries) will be made available, in addition to study protocols, the statistical analysis plan, and the informed consent form. The data will be made available upon publication to researchers who provide a methodologically sound proposal for use in achieving the goals of the approved proposal. Proposals should be submitted to Susi Kriemler (susi.kriemlerwigetuzh.ch).

Data Availability

Deidentified individual participant data (including data dictionaries) will be made available, in addition to study protocols, the statistical analysis plan, and the informed consent form. The data will be made available upon publication to researchers who provide a methodologically sound proposal for use in achieving the goals of the approved proposal. Proposals should be submitted to Susi Kriemler (susi.kriemlerwigetuzh.ch).

AbbreviationsFLiP(“Frühgeborenen Lungen Projekt” / Premature Infant Lung Project)HRQOL(health-related quality of life)SES(Socio-economic status)