ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2025
"I think her life got so much better": parents' perceptions of children's quality of life following treatment of tracheomalacia with aortopexy.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed.
- Single-center experience with aortopexy in pediatric tracheomalacia: a case series.Journal of cardiothoracic surgery · 2026Article
- Experiences of symptom burden among young children born with esophageal atresia-tracheoesophageal fistula: a US focus group study.Orphanet journal of rare diseases · 2025Article
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAortopexy is a procedure to reduce pressure on the trachea in children with severe tracheomalacia. Health-related quality of life (HRQoL) has not been studied in children who have undergone aortopexy; we aimed to explore parents' perceptions of their child's HRQoL before and after aortopexy.
methodsParents of children < 18 years who underwent aortopexy at a quaternary specialist centre were purposively sampled and invited to participate in a semi-structured interview. Data were analysed using reflective thematic and content analysis.
resultsEight interviews (23-56 min) were completed with parents whose children were aged 1.9-12.1 years. HRQoL is explored through themes: a challenging diagnosis, lifechanging, and an understanding of limitations. Parents struggled to obtain a diagnosis of tracheomalacia while their child experienced serious symptoms. Aortopexy was seen as life-saving and allowed a return to family life. Airway safety, having their health and achieving a better quality of life were important outcomes of the procedure.
conclusionQuality of life following aortopexy was perceived to be greatly improved. Children still struggled in aspects of their life, however families worked within their child's limitations, appreciating the life-saving nature of the intervention, and accepting the complexities of their child's comorbidities. Holistic interventions are important for those at risk of poor HRQoL outcomes.
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