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Factors influencing quality of life in children with tracheostomy with emphasis on home care visits: a multi-centre investigation

Published online by Cambridge University Press:  12 September 2022

B Mirza ,
A Marouf Open the ORCID record for A Marouf [Opens in a new window] ,
F Abi Sheffah ,
O Marghlani ,
J Heaphy ,
A Alherabi ,
F Zawawi Open the ORCID record for F Zawawi [Opens in a new window] ,
I Alnoury  and
T Al-Khatib
B Mirza
Affiliation:
Department of Otolaryngology – Head and Neck Surgery, Faculty of Medicine, King Abdulaziz University, Jeddah
A Marouf*
Affiliation:
Department of Surgery, Otolaryngology – Head and Neck Surgery Section, King Faisal Specialist Hospital and Research Centre, Jeddah
F Abi Sheffah
Affiliation:
Department of Surgery, Otolaryngology – Head and Neck Surgery Section, King Faisal Specialist Hospital and Research Centre, Jeddah
O Marghlani
Affiliation:
Department of Surgery, Otolaryngology – Head and Neck Surgery Section, King Faisal Specialist Hospital and Research Centre, Jeddah Department of Otolaryngology – Head and Neck Surgery, College of Medicine, Umm Al-Qura University, Makkah, Saudi Arabia
J Heaphy
Affiliation:
Department of Surgery, Otolaryngology – Head and Neck Surgery Section, King Faisal Specialist Hospital and Research Centre, Jeddah
A Alherabi
Affiliation:
Department of Surgery, Otolaryngology – Head and Neck Surgery Section, King Faisal Specialist Hospital and Research Centre, Jeddah Department of Otolaryngology – Head and Neck Surgery, College of Medicine, Umm Al-Qura University, Makkah, Saudi Arabia
F Zawawi
Affiliation:
Department of Otolaryngology – Head and Neck Surgery, Faculty of Medicine, King Abdulaziz University, Jeddah
I Alnoury
Affiliation:
Department of Otolaryngology – Head and Neck Surgery, Faculty of Medicine, King Abdulaziz University, Jeddah
T Al-Khatib
Affiliation:
Department of Otolaryngology – Head and Neck Surgery, Faculty of Medicine, King Abdulaziz University, Jeddah Department of Surgery, Otolaryngology – Head and Neck Surgery Section, King Faisal Specialist Hospital and Research Centre, Jeddah
*
Author for correspondence: Dr A Marouf, Department of Surgery, Otolaryngology – Head and Neck Surgery Section, King Faisal Specialist Hospital and Research Centre, Prince Saud Al Faisal Street, Jeddah 11211, Saudi Arabia E-mail: axm1676@case.edu
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Abstract

Objective

Only a few studies have assessed the quality of life in children with tracheostomies. This study aimed to evaluate the quality of life and the factors influencing it in these children.

Method

This cross-sectional, two-centre study was conducted on paediatric patients living in the community with a tracheostomy by using the Pediatric Quality of Life Inventory. Clinical and demographic information of patients, as well as parents’ socioeconomic factors, were obtained.

Results

A total of 53 patients met our inclusion criteria, and their parents agreed to participate. The mean age of patients was 6.85 years, and 21 patients were ventilator-dependent. The total paediatric health-related quality of life score was 59.28, and the family impact score was 68.49. In non-ventilator-dependent patients, multivariate analyses indicated that social functioning and health-related quality of life were negatively affected by the duration of tracheostomy. The Quality of Life of ventilator-dependent patients was influenced by care visits and the presence of pulmonary co-morbidities.

Conclusion

Children with tracheostomies have a lower quality of life than healthy children do. Routine care visits by a respiratory therapist and nurses yielded significantly improved quality of life in ventilator-dependent children.

Keywords

TracheostomyQuality Of LifeLanguage Development
Type
Main Article
Information
The Journal of Laryngology & Otology , Volume 137 , Issue 10 , October 2023 , pp. 1102 - 1109
Copyright
Copyright © The Author(s), 2022. Published by Cambridge University Press on behalf of J.L.O. (1984) LIMITED

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Footnotes

*

Co-first author

Dr A Marouf takes responsibility for the integrity of the content of the paper

References

Fuller, C, Wineland, AM, Richter, GT. Update on pediatric tracheostomy: indications, technique, education, and decannulation. Current Otorhinolaryngol Rep 2021;9:188–99CrossRefGoogle ScholarPubMed
Friesen, TL, Zamora, SM, Rahmanian, R, Bundogji, N, Brigger, MT. Predictors of pediatric tracheostomy outcomes in the United States. Otolaryngol Head Neck Surg 2020;163:591–9CrossRefGoogle ScholarPubMed
Resen, MS, Grønhøj, C, Hjuler, T. National changes in pediatric tracheotomy epidemiology during 36 years. Eur Arch Otorhinolaryngol 2018;275:803–8CrossRefGoogle ScholarPubMed
Liu, C, Heffernan, C, Saluja, S, Yuan, J, Paine, M, Oyemwense, N et al. Indications, hospital course, and complexity of patients undergoing tracheostomy at a tertiary care pediatric hospital. Otolaryngol Head Neck Surg 2014;151:232–9CrossRefGoogle Scholar
Kremer, B, Botos-Kremer, AI, Eckel, HE, Schlöndorff, G. Indications, complications, and surgical techniques for pediatric tracheostomies—an update. J Pediatric Surg 2002;37:1556–62CrossRefGoogle ScholarPubMed
Lee, JH, Smith, PB, Quek, MB, Laughon, MM, Clark, RH, Hornik, CP. Risk factors and in-hospital outcomes following tracheostomy in infants. J Pediatrics 2016;173:39–44CrossRefGoogle ScholarPubMed
Kabbani, MS, Al-Eathan, A, Azzam, M, Al Alem, H, Abu-Taleb, A, Hijazi, O. Tracheostomy in pediatric intensive care. Analysis of 5-year-experience and review of literature. Saudi Med J 2004:25;1282–4Google ScholarPubMed
Fageeh, N. Pediatric tracheostomy: Indications and clinical outcome. Pak J Surg 2015;31:128–32Google Scholar
Hopkins, C, Whetstone, S, Foster, T, Blaney, S, Morrison, G. The impact of paediatric tracheostomy on both patient and parent. Int J Pediatric Otorhinolaryngol 2009;73:15–20CrossRefGoogle ScholarPubMed
Westwood, EL, Hutchins, JV, Thevasagayam, R. Quality of life in paediatric tracheostomy patients and their caregivers–a cross-sectional study. Int J Pediatric Otorhinolaryngol 2019;127:109606CrossRefGoogle ScholarPubMed
Varni, JW, Limbers, CA, Burwinkle, TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales. Health Qual Life Outcomes 2007;5:43CrossRefGoogle Scholar
Din, TF, McGuire, J, Booth, J, Lytwynchuk, A, Fagan, JJ, Peer, S. The assessment of quality of life in children with tracheostomies and their families in a low to middle income country (LMIC). Int J Pediatric Otorhinolaryngol 2020;138:110319CrossRefGoogle Scholar
Spratling, R, Minick, P, Carmon, M. The experiences of school-age children with a tracheostomy. J Pediatric Health Care 2012;26:118–25CrossRefGoogle ScholarPubMed
Varni, JW, Limbers, CA. The PedsQL™ 4.0 generic core scales young adult version: feasibility, reliability and validity in a university student population. J Health Psychol 2009;14:611–22CrossRefGoogle Scholar
Flynn, AP, Carter, B, Bray, L, Donne, AJ. Parents’ experiences and views of caring for a child with a tracheostomy: a literature review. Int J Pediatric Otorhinolaryngol 2013;77:1630–4CrossRefGoogle ScholarPubMed
Fiske, E. Effective strategies to prepare infants and families for home tracheostomy care. Adv Neonatal Care 2004;4:42–53CrossRefGoogle ScholarPubMed
Wooldridge, AL, Carter, KF. Pediatric and neonatal tracheostomy caregiver education with phased simulation to increase competency and enhance coping. J Pediatr Nurs 2021;60:247–51CrossRefGoogle ScholarPubMed
Al-Khatib, T, Mahfoz, TB, Arif, R. Nurses training, clinical support and confidence in management of tracheostomy patients in Jeddah, Saudi Arabia. Saudi J Otorhinolaryngol Head Neck Surg 2017;19:51Google Scholar
Edwards, EA, O'Toole, M, Wallis, C. Sending children home on tracheostomy dependent ventilation: pitfalls and outcomes. Arch Dis Childhood 2004;89:251–5CrossRefGoogle ScholarPubMed
Hartnick, CJ, Bissell, C, Parsons, SK. The impact of pediatric tracheotomy on parental caregiver burden and health status. Arch Otolaryngol Head Neck Surg 2003;129:1065–9CrossRefGoogle ScholarPubMed
Joseph, RA, Goodfellow, LM, Simko, LM. Parental quality of life: caring for an infant or toddler with a tracheostomy at home. Neonatal Network 2014;33:86–94CrossRefGoogle ScholarPubMed
Johnson, RF, Brown, A, Brooks, R. The family impact of having a child with a tracheostomy. Laryngoscope 2021;31:911–5CrossRefGoogle Scholar
Al-Gamal, EA, Long, T. Psychometric properties of the Arabic version of the PedsQL™ Family. J Res Nurs 2016;21:599–608CrossRefGoogle Scholar
McKeon, M, Kohn, J, Munhall, D, Wells, S, Blanchette, S, Santiago, R et al. Association of a multidisciplinary care approach with the quality of care after pediatric tracheostomy. JAMA Otolaryngol Head Neck Surg 2019;145:1035–42CrossRefGoogle ScholarPubMed
Ong, T, Liu, CC, Elder, L, Hill, L, Abts, M, Dahl, JP et al. The Trach Safe Initiative: a quality improvement initiative to reduce mortality among pediatric tracheostomy patients. Otolaryngol Head Neck Surg 2020;163:221–31CrossRefGoogle Scholar
Al-Samri, M, Mitchell, I, Drummond, DS, Bjornson, C. Tracheostomy in children: a population-based experience over 17 years. Pediatric Pulmonol 2010;45:487–93CrossRefGoogle ScholarPubMed
Seid, M, Limbers, CA, Driscoll, KA, Opipari-Arrigan, LA, Gelhard, LR, Varni, JW. Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory™(PedsQL™) Generic Core Scales and Asthma Symptoms Scale in vulnerable children with asthma. J Asthma 2010;47:170–7CrossRefGoogle Scholar
Varni, JW. PedsQL TM (Pediatric Quality of Life Inventory TM). https://www.pedsql.org/ [10 October 2021]Google Scholar
Arabiat, D, Elliott, B, Draper, P, Al Jabery, M. Cross-cultural validation of the pediatric quality of life inventory™ 4.0 (PedsQL™) generic core scale into arabic language. Scand J Car Sci 2011;25:828–33CrossRefGoogle ScholarPubMed
Sabbah, I, Sabbah, H, Sabbah, S, Akoum, H, Droubi, N, Mercier, M. Measurement properties of the Arabic Lebanon version of the Pediatric Quality of Life Inventory 4.0 generic core scales for young child (5-7 years), and child aged 8-12 years: quality of life of in urban and rural children in Lebanon. Creative Edu 2012;3:959CrossRefGoogle Scholar
Abdul-Rasoul, M, AlOtaibi, F, AlMahdi, M, AlKandari, H. Reliability and validity of the Arabic version of the PedsQL TM 4.0 generic ore scales and PedsQL TM 3.0 diabetes module. J Diabetes Mellitus 2012;2:22184CrossRefGoogle Scholar
Al-Gamal, E, Long, T. Psychometric properties of the Arabic version of the PedsQL Family Impact Scale. J Res Nurs 2016;21:599–608CrossRefGoogle Scholar
Jiang, D, Morrison, GA. The influence of long-term tracheostomy on speech and language development in children. Int J Pediatric Otorhinolaryngol 2003;67:S217–20CrossRefGoogle ScholarPubMed
Hill, BP, Singer, LT. Speech and language development after infant tracheostomy. J Speech Hear Disord 1990;55:15–20CrossRefGoogle ScholarPubMed
Upadhyay, K, Vallarino, DA, Talati, AJ. Outcomes of neonates with tracheostomy secondary to bronchopulmonary dysplasia. BMC Pediatr 2020;20:414CrossRefGoogle ScholarPubMed
Marchese, S, Coco, DL, Coco, AL. Outcome and attitudes toward home tracheostomy ventilation of consecutive patients: a 10-year experience. Respir Med 2008;102:430–6CrossRefGoogle Scholar
Zhang, X, Zhou, H, Shen, H, Wang, M. Pulmonary infection in traumatic brain injury patients undergoing tracheostomy: predicators and nursing care. BMC Pulm Med 2022;22:130CrossRefGoogle ScholarPubMed
Fitton, CM. Nursing management of the child with a tracheotomy. Pediatr Clin North Am 1994;41:513–23CrossRefGoogle ScholarPubMed
Yaneza, MM, James, HP, Davies, P, Harrison, S, McAlorum, L, Clement, WA et al. Changing indications for paediatric tracheostomy and the role of a multidisciplinary tracheostomy clinic. J Laryngol Otol 2015;129:882–6CrossRefGoogle ScholarPubMed
Arvedson, JC, Brodsky, L. Pediatric tracheotomy referrals to speech-language pathology in a children's hospital. Int J Pediat Otorhinolaryngol 1992;23:237–43CrossRefGoogle ScholarPubMed
McGowan, SL, Ward, EC, Wall, LR, Shellshear, LR, Spurgin, AL. UK survey of clinical consistency in tracheostomy management. Int J Lang Comm Dis 2014;49:127–38CrossRefGoogle ScholarPubMed
Wiberg, S, Whitling, S, Bergström, L. Tracheostomy management by speech-language pathologists in Sweden. Logoped Phoniatr Vocol 2020;47:9:146–56CrossRefGoogle ScholarPubMed
Mitchell, RB, Hussey, HM, Setzen, G, Jacobs, IN, Nussenbaum, B, Dawson, C et al. Clinical consensus statement: tracheostomy care. Otolaryngol Head Neck Surg 2013;148:6–20CrossRefGoogle ScholarPubMed
Watters, KF. Tracheostomy in infants and children. Respir Care 2017;62:799–825CrossRefGoogle ScholarPubMed
Oberwaldner, B, Eber, E. Tracheostomy care in the home. Paediatric Respir Rev 2006;7:185–90CrossRefGoogle ScholarPubMed
National Health Service (NHS). Caring for the Patient with a Tracheostomy, 2nd edn. Edinburgh: NHS Quality Improvement Scotland, 2007Google Scholar
Joseph, RA. Tracheostomy in infants: parent education for home care. Neonat Network 2011;30:231–42CrossRefGoogle ScholarPubMed
McCormick, ME, Ward, E, Roberson, DW, Shah, RK, Stachler, RJ, Brenner, MJ. Life after tracheostomy: patient and family perspectives on teaching, transitions, and multidisciplinary teams. Otolaryngol Head Neck Surg 2015;153:914–20CrossRefGoogle ScholarPubMed
Liao, K, Chorney, SR, Brown, AB, Brooks, RL, Sewell, A, Bailey, C et al. The impact of socioeconomic disadvantage on pediatric tracheostomy outcomes. Laryngoscope 2021;131:2603–9CrossRefGoogle ScholarPubMed
Montagnino, BA, Mauricio, RV. The child with a tracheostomy and gastrostomy: parental stress and coping in the home-a pilot study. Pediatric Nurs 2004;30:373Google ScholarPubMed
McDonald, H, Thomas, AJ. Outcome of physiotherapy led decannulation from tracheostomy practice in a large London teaching hospital. Physiother 2015;101:e1510–1CrossRefGoogle Scholar