The Family Impact of Having a Child with a Tracheostomy.
Quality of life, pediatric tracheostomy, PedsQL
Journal
The Laryngoscope
ISSN: 1531-4995
Titre abrégé: Laryngoscope
Pays: United States
ID NLM: 8607378
Informations de publication
Date de publication:
04 2021
04 2021
Historique:
received:
10
01
2020
revised:
19
05
2020
accepted:
13
07
2020
pubmed:
17
8
2020
medline:
7
4
2021
entrez:
16
8
2020
Statut:
ppublish
Résumé
Measure the quality of life among families with children with tracheostomies. We performed a prospective cross-sectional analysis of families with children with tracheostomies utilizing the PedQL Family Impact Module-a validated quality of life assessment. We determined if scores were impacted by demographics using regression analysis. We also compared the tracheostomy sample's scores to a previously published cohort of children with severe cerebral palsy and birth defects that required home nursing or nursing home placement using the student's t-test. We determined the effect size of the difference between the two groups using the Cohen's d test. Ninety-eight families are included in the study. The average (SD) age of tracheostomy placement was 1.6 (3.5) years. The population was 60% (59/98) male and 39% (38/98) Hispanic. The principal reason for tracheostomy was due to respiratory failure (76 out of 98; 78%). The mean (SD) total Family Impact score was 76 (19). The lowest domain score was daily activity problems, mean (SD) = 67 (30) followed by worry (mean = 69, SD = 24). The lowest question score was, "I worry about my child's future," mean (SD) = 52 (37). When compared to the comparison group of medically fragile children, the scores were statistically similar except for communication totals where tracheostomy patients reported superior scores (78.3 vs. 62.9, 95% CI, -26 to -4.8, P = .005, Cohen's d = -0.66). The presence of a tracheostomy is associated with QOL scores like other medically fragile children. 4 Laryngoscope, 131:911-915, 2021.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
911-915Informations de copyright
© 2020 American Laryngological, Rhinological and Otological Society Inc, "The Triological Society" and American Laryngological Association (ALA).
Références
Sakai M, Kou YF, Shah GB, Johnson RF. Tracheostomy demographics and outcomes among pediatric patients ages 18 years or younger-United States 2012. Laryngoscope 2019;129:1706-1711.
Lee JH, Smith PB, Quek MB, Laughon MM, Clark RH, Hornik CP. Risk factors and in-hospital outcomes following tracheostomy in infants. J Pediatr 2016;173:39-44 e31.
Liu C, Heffernan C, Saluja S, et al. Indications, hospital course, and complexity of patients undergoing tracheostomy at a tertiary care pediatric hospital. Otolaryngol Head Neck Surg 2014;151:232-239.
Wang CS, Kou YF, Shah GB, Mitchell RB, Johnson RF. Tracheostomy in extremely preterm neonates in the United States: a cross-sectional analysis. Laryngoscope 2019;130:2056-2062.
Jordan S, Kou YF, Shah GB, Mitchell RB, Johnson RF. Survival analysis and decannulation outcomes of infants with tracheotomies. Laryngoscope 2019. https://doi.org/10.1002/lary.28297
Friedman EM, Johnson RF. Professionalism, quality, and safety for pediatric otolaryngologists. Otolaryngol Clin North Am 2019;52:969-980.
Das P, Zhu H, Shah RK, Roberson DW, Berry J, Skinner ML. Tracheotomy-related catastrophic events: results of a national survey. Laryngoscope 2012;122:30-37.
Eibling DE, Roberson DW. Managing tracheotomy risk: time to look beyond hospital discharge. Laryngoscope 2012;122:23-24.
Mitchell RB, Hussey HM, Setzen G, et al. Clinical consensus statement: tracheostomy care. Otolaryngol Head Neck Surg 2013;148:6-20.
Amin RS, Fitton CM. Tracheostomy and home ventilation in children. Semin Neonatol 2003;8:127-135.
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 Pediatr Otorhinolaryngol 2013;77:1630-1634.
Hartnick CJ, Bissell C, Parsons SK. The impact of pediatric tracheotomy on parental caregiver burden and health status. Arch Otolaryngol Head Neck Surg 2003;129:1065-1069.
Reeves E, Timmons S, Dampier S. Parents' experiences of negotiating care for their technology-dependent child. J Child Health Care 2006;10:228-239.
Woodgate RL, Edwards M, Ripat J. How families of children with complex care needs participate in everyday life. Soc Sci Med 2012;75:1912-1920.
Hartnick C, Diercks G, De Guzman V, Hartnick E, Van Cleave J, Callans K. A quality study of family-centered care coordination to improve care for children undergoing tracheostomy and the quality of life for their caregivers. Int J Pediatr Otorhinolaryngol 2017;99:107-110.
Westwood EL, Hutchins JV, Thevasagayam R. Quality of life in paediatric tracheostomy patients and their caregivers - a cross-sectional study. Int J Pediatr Otorhinolaryngol 2019;127:109606.
Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The PedsQL family impact module: preliminary reliability and validity. Health Qual Life Outcomes 2004;2:55.
Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001;39:800-812.
Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)-a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009;42:377-381.
von Elm E, Altman DG, Egger M, et al. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. J Clin Epidemiol 2008;61:344-349.
Fallowfield L. What is Quality of Life? Available at: www.whatisseries.co.uk. Published 2009. Accessed May 12, 2019.
World Health Organization. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995;41:1403-1409.
Shah RK, Lander L, Berry JG, Nussenbaum B, Merati A, Roberson DW. Tracheotomy outcomes and complications: a national perspective. Laryngoscope 2012;122:25-29.
Hartnick CJ, Giambra BK, Bissell C, Fitton CM, Cotton RT, Parsons SK. Final validation of the Pediatric Tracheotomy Health Status Instrument (PTHSI). Otolaryngol Head Neck Surg 2002;126:228-233.
Ware J Jr, Kosinski M, Keller SD. A 12-item short-form health survey: construction of scales and preliminary test of reliability and validity. Med Care 1996;34:220-233.
Hopkins C, Whetstone S, Foster T, Blaney S, Morrison G. The impact of paediatric tracheostomy on both patient and parent. Int J Pediatr Otorhinolaryngol 2009;73:15-20.
Smith KA, Bosch JD, Pelletier G, MacKenzie M, Hoy MY. The development of a tracheostomy-specific quality of life questionnaire: a pilot study. Ann Otol Rhinol Laryngol 2016;125:667-671.
Cohen SR, Suzman K, Simms C, Burstein FD, Riski J, Montgomery G. Sleep apnea surgery versus tracheostomy in children: an exploratory study of the comparative effects on quality of life. Plast Reconstr Surg 1998;102:1855-1864.
Kirk S, Glendinning C. Supporting 'expert' parents-professional support and families caring for a child with complex health care needs in the community. Int J Nurs Stud 2002;39:625-635.
Mentro AM, Steward DK. Caring for medically fragile children in the home: an alternative theoretical approach. Res Theory Nurs Pract 2002;16:161-177.
Montagnino BA, Mauricio RV. The child with a tracheostomy and gastrostomy: parental stress and coping in the home-a pilot study. Pediatr Nurs 2004;30:373-380. 401.