Shared Perspectives: Evaluating the impact of tracheostomy on quality of life through the voices of children and their parents

IF 1.2 4区医学 Q3 OTORHINOLARYNGOLOGY

International journal of pediatric otorhinolaryngology Pub Date : 2025-05-08 DOI:10.1016/j.ijporl.2025.112386

Michelle Fong , Beth Osterbauer , My H. Vu , Nicole Anderson , Elizabeth Franco , Christian Hochstim

{"title":"Shared Perspectives: Evaluating the impact of tracheostomy on quality of life through the voices of children and their parents","authors":"Michelle Fong , Beth Osterbauer , My H. Vu , Nicole Anderson , Elizabeth Franco , Christian Hochstim","doi":"10.1016/j.ijporl.2025.112386","DOIUrl":null,"url":null,"abstract":"<div><h3>Background</h3><div>There is a significant morbidity burden associated with tracheostomy in children as well as the physical, time, and financial burdens on their caregivers. We aimed to assess how living with a tracheostomy impacts the quality of life of patients and their caregivers compared to children without tracheostomy.</div></div><div><h3>Methods</h3><div>A cross sectional study was conducted of children attending the outpatient otolaryngology clinic at a tertiary urban children's hospital. All parents completed the Pediatric Quality of Life Inventory™ (PedsQL) 4.0 and the PedsQL™ Family Impact Module questionnaires. Children 5 years of age and older completed the age group specific PedsQL™ 4.0 Child Report.</div></div><div><h3>Results</h3><div>Mean scores for the Family Impact Module (FIM) were significantly lower in the tracheostomy group as compared to the controls (68.9 [SD 20] vs. 79.7 [SD 16], p = 0.004) representing more reported problems. The biggest differences in the parents' report on their children's quality of life were seen in the social functioning and cognition of the children (66.1 [SD 25.8] vs. 82.3 [SD 19.7], p < 0.001; and 58.0 [SD 27] vs. 72.2 [SD 23.5], p = 0.01, respectively). Additionally, parent reported scores for their children were highly correlated with their children's self-reports (R = 0.44, p = 0.002).</div></div><div><h3>Conclusion</h3><div>We describe a novel measurement among tracheostomy patients of children's self-reported quality of life. Physicians and care teams involved in caring for children living with tracheostomy should be aware of the wide-ranging impacts on the quality of life for the entire family and be prepared to offer appropriate resources.</div></div>","PeriodicalId":14388,"journal":{"name":"International journal of pediatric otorhinolaryngology","volume":"194 ","pages":"Article 112386"},"PeriodicalIF":1.2000,"publicationDate":"2025-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"International journal of pediatric otorhinolaryngology","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0165587625001739","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"OTORHINOLARYNGOLOGY","Score":null,"Total":0}

引用次数: 0

Abstract

Background

There is a significant morbidity burden associated with tracheostomy in children as well as the physical, time, and financial burdens on their caregivers. We aimed to assess how living with a tracheostomy impacts the quality of life of patients and their caregivers compared to children without tracheostomy.

Methods

A cross sectional study was conducted of children attending the outpatient otolaryngology clinic at a tertiary urban children's hospital. All parents completed the Pediatric Quality of Life Inventory™ (PedsQL) 4.0 and the PedsQL™ Family Impact Module questionnaires. Children 5 years of age and older completed the age group specific PedsQL™ 4.0 Child Report.

Results

Mean scores for the Family Impact Module (FIM) were significantly lower in the tracheostomy group as compared to the controls (68.9 [SD 20] vs. 79.7 [SD 16], p = 0.004) representing more reported problems. The biggest differences in the parents' report on their children's quality of life were seen in the social functioning and cognition of the children (66.1 [SD 25.8] vs. 82.3 [SD 19.7], p < 0.001; and 58.0 [SD 27] vs. 72.2 [SD 23.5], p = 0.01, respectively). Additionally, parent reported scores for their children were highly correlated with their children's self-reports (R = 0.44, p = 0.002).

Conclusion

We describe a novel measurement among tracheostomy patients of children's self-reported quality of life. Physicians and care teams involved in caring for children living with tracheostomy should be aware of the wide-ranging impacts on the quality of life for the entire family and be prepared to offer appropriate resources.

查看原文本刊更多论文

共同观点：通过儿童及其父母的声音评估气管切开术对生活质量的影响

儿童气管切开术的发病率和照顾者的身体、时间和经济负担都很高。我们的目的是评估气管切开术与未气管切开术的儿童相比如何影响患者及其护理人员的生活质量。方法对某城市三级儿童医院耳鼻喉科门诊患儿进行横断面调查。所有家长都完成了儿科生活质量量表™（PedsQL） 4.0和PedsQL™家庭影响模块问卷。5岁及以上的儿童完成了针对特定年龄组的PedsQL™4.0儿童报告。结果气管切开术组家庭影响模块（FIM）的平均得分明显低于对照组（68.9 [SD 20]对79.7 [SD 16], p = 0.004），表明报告的问题较多。父母对子女生活质量的报告差异最大的是在儿童的社会功能和认知方面(66.1 [SD 25.8] vs. 82.3 [SD 19.7], p <；0.001;58.0 [SD 27]对72.2 [SD 23.5], p = 0.01)。此外，家长为孩子报告的分数与孩子的自我报告高度相关（R = 0.44, p = 0.002）。结论采用一种新颖的方法对气管切开术患儿自我报告的生活质量进行测量。参与照顾气管切开术儿童的医生和护理小组应该意识到对整个家庭生活质量的广泛影响，并准备提供适当的资源。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

International journal of pediatric otorhinolaryngology 医学-耳鼻喉科学

CiteScore

3.20

自引率

6.70%

发文量

276

审稿时长

62 days

期刊介绍： The purpose of the International Journal of Pediatric Otorhinolaryngology is to concentrate and disseminate information concerning prevention, cure and care of otorhinolaryngological disorders in infants and children due to developmental, degenerative, infectious, neoplastic, traumatic, social, psychiatric and economic causes. The Journal provides a medium for clinical and basic contributions in all of the areas of pediatric otorhinolaryngology. This includes medical and surgical otology, bronchoesophagology, laryngology, rhinology, diseases of the head and neck, and disorders of communication, including voice, speech and language disorders.