Health-related quality of life and developmental outcome of children on home mechanical ventilation in a developing country: A cross-sectional study.
Malaysia
child
development
home ventilation
quality of life
Journal
Pediatric pulmonology
ISSN: 1099-0496
Titre abrégé: Pediatr Pulmonol
Pays: United States
ID NLM: 8510590
Informations de publication
Date de publication:
12 2020
12 2020
Historique:
received:
21
04
2020
revised:
04
09
2020
accepted:
17
09
2020
pubmed:
2
10
2020
medline:
26
3
2021
entrez:
1
10
2020
Statut:
ppublish
Résumé
Provision of home mechanical ventilation (HMV) to children with chronic respiratory insufficiency enhances growth and quality of life. The hypothesis was that health-related quality of life (HRQoL) and the development of these children were poorer than in healthy children. To determine the HRQoL and developmental outcome of children on HMV. This cross-sectional study used the TNO-AZL Preschool children's Quality Of Life (TAPQOL; <5 years old) and Health Utilities Index (HUI) 2/3 (≥5 years old) to assess the quality of life and the Schedule of Growing Skills-II to assess development. Instruments were used on children currently or previously on HMV (≥3 months) and compared with age and sex-matched controls. Sixty-five patients and 130 controls were recruited. Patients' median (interquartile range) age was 3.12 (1.65, 5.81) years. Patients had significantly lower TAPQOL scores in the domains of lung, liveliness, positive mood, social functioning, motor functioning, and communication, and lower HUI 2/3 scores in hearing, sensation, pain, speech, mobility, ambulatory, dexterity, and self-care domains. The developmental outcome of patients was poorer in all domains. However, patients had fewer behavioral problems. Those with respiratory tract disease and without comorbidities had better HRQoL and developmental scores. Having a parent as the primary caregiver was associated with better speech and language skills. HRQoL and the developmental outcome are lower in children on HMV compared to controls. Children with respiratory tract disease and without comorbidities have a better outcome. Parents play a crucial role in the acquisition of speech.
Sections du résumé
BACKGROUND
Provision of home mechanical ventilation (HMV) to children with chronic respiratory insufficiency enhances growth and quality of life. The hypothesis was that health-related quality of life (HRQoL) and the development of these children were poorer than in healthy children.
OBJECTIVES
To determine the HRQoL and developmental outcome of children on HMV.
METHODS
This cross-sectional study used the TNO-AZL Preschool children's Quality Of Life (TAPQOL; <5 years old) and Health Utilities Index (HUI) 2/3 (≥5 years old) to assess the quality of life and the Schedule of Growing Skills-II to assess development. Instruments were used on children currently or previously on HMV (≥3 months) and compared with age and sex-matched controls.
RESULTS
Sixty-five patients and 130 controls were recruited. Patients' median (interquartile range) age was 3.12 (1.65, 5.81) years. Patients had significantly lower TAPQOL scores in the domains of lung, liveliness, positive mood, social functioning, motor functioning, and communication, and lower HUI 2/3 scores in hearing, sensation, pain, speech, mobility, ambulatory, dexterity, and self-care domains. The developmental outcome of patients was poorer in all domains. However, patients had fewer behavioral problems. Those with respiratory tract disease and without comorbidities had better HRQoL and developmental scores. Having a parent as the primary caregiver was associated with better speech and language skills.
CONCLUSIONS
HRQoL and the developmental outcome are lower in children on HMV compared to controls. Children with respiratory tract disease and without comorbidities have a better outcome. Parents play a crucial role in the acquisition of speech.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
3477-3486Informations de copyright
© 2020 Wiley Periodicals LLC.
Références
McDougall CM, Adderley RJ, Wensley DF, Seear MD. Long-term ventilation in children: longitudinal trends and outcomes. Arch Dis Child. 2013;98(9):660-665.
Tibballs J, Henning R, Robertson CF, et al. A home respiratory support programme for children by parents and layperson carers. J Paediatr Child Health. 2010;46(1-2):57-62.
Edwards E, Hsiao K, Nixon G. Paediatric home ventilatory support: the Auckland experience. J Paediatr Child Health. 2005;41(12):652-658.
Graham RJ, Fleegler EW, Robinson WM. Chronic ventilator need in the community: a 2005 pediatric census of Massachusetts. Pediatrics. 2007;119(6):e1280-e1287.
Gowans M, Keenan HT, Bratton SL. The population prevalence of children receiving invasive home ventilation in Utah. Pediatr Pulmonol. 2007;42(3):231-236.
Bertrand P, Fehlmann E, Lizama M, Holmgren N, Silva M, Sánchez I. Home ventilatory assistance in Chilean children: 12 years' experience. Arch Bronconeumol. 2006;42(4):165-170.
Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess. 2001;5(4):1-157.
González R, Bustinza A, Fernandez SN, et al. Quality of life in home-ventilated children and their families. Eur J Pediatr. 2017;176(10):1307-1317.
Fiks AG, Mayne S, Localio AR, Alessandrini EA, Guevara JP. Shared decision-making and health care expenditures among children with special health care needs. Pediatrics. 2012;129(1):99-107.
Horsman J, Furlong W, Feeny D, Torrance G. The Health Utilities Index (HUI®): concepts, measurement properties and applications. Health Qual Life Outcomes. 2003;1(1):54.
Feeny D, Furlong W, Torrance GW, et al. Multiattribute and single-attribute utility functions for the health utilities index mark 3 system. Med Care. 2002;40(2):113-128.
Furlong WJ, Feeny DH, Torrance GW, Barr RD. The Health Utilities Index (HUI®) system for assessing health-related quality of life in clinical studies. Ann Med. 2001;33(5):375-384.
Fekkes M, Theunissen NCM, Brugman E, et al. Development and psychometric evaluation of the TAPQOL: a health-related quality of life instrument for 1-5-year-old children. Qual Life Res. 2000;9(8):961-972.
Tay CG, Jalaludin MY, Low WY, Lim CT. Cross-cultural adaptation and validation of the Malay language version of the TZO-AZL Preschool Children Quality of Life questionnaire: a health-related quality of life instrument for preschool children. J Child Health Care. 2015;19(2):167-181.
Lee C-F, Chien LY, Ko YL, Chou YH, Tai CJ, Liou YM. Development and psychometric properties of the Chinese language version of the TAPQOL: a health-related quality of life instrument for preschool children. Int J Nurs Stud. 2005;42(4):457-465.
Rajmil L, Abad S, Sardon O, et al. Reliability and validity of the Spanish version of the TAPQOL: a health-related quality of life (HRQOL) instrument for 1-to 5-year-old children. Int J Nurs Stud. 2011;48(5):549-556.
Theunissen NCM, Veen S, Fekkes M, et al. Quality of life in preschool children born preterm. Dev Med Child Neurol. 2001;43(7):460-465.
Schepers SA, van Oers HA, Maurice-Stam H, et al. Health related quality of life in Dutch infants, toddlers, and young children. Health Qual Life Outcomes. 2017;15(1):81.
Bunge EM. Reliability and validity of health status measurement by the TAPQOL. Arch Dis Child. 2005;90(4):351-358.
Khambekar K. Developmental outcome in newborn infants treated for acute respiratory failure with extracorporeal membrane oxygenation: present experience. Arch Dis Child-Fetal Neonatal Ed. 2006;91(1):F21-F25.
Edwards LC, Frost R, Witham F. Developmental delay and outcomes in paediatric cochlear implantation: implications for candidacy. Int J Pediatr Otorhinolaryngol. 2006;70(9):1593-1600.
Amess P, Young T, Burley H, Khan Y. Developmental outcome of very preterm babies using an assessment tool deliverable by health visitors. Eur J Paediatr Neurol. 2010;14(3):219-223.
Soares H, Barbieri-Figueiredo M, Pereira S, Silva M, Fuertes M. Parents attending to nurse visits and birth age contribute to infant development: a study about the determinants of infant development. Early Hum Dev. 2018;122:15-21.
Bellman M, Lingam S, Aukett A. Schedule of Growing Skills II. NFER-Nelson; 1996.
Williams ME, Hutchings J, Bywater T, Daley D, Whitaker CJ. Schedule of Growing Skills II: pilot study of an alternative scoring method. Psychology. 2013;4(3):143-152.
Rudan I. Epidemiology and etiology of childhood pneumonia. Bull World Health Organ. 2008;86:408-416.
Redouane B, Cohen E, Stephens D, et al. Parental perceptions of quality of life in children on long-term ventilation at home as compared to enterostomy tubes. PLoS One. 2016;11(2):e0149999.
Cancelinha C, Madureira N, Mação P, Pleno P, Silva T, Estêvão MH, Félix M. Long-term ventilation in children: ten years later. Rev Port Pneumol. 2015;21(1):16-21.
Ikeda A, Tsuji M, Goto T, Iai M. Long-term home non-invasive positive pressure ventilation in children: results from a single center in Japan. Brain Dev. 2018;40(7):558-565.
Dumas HM. Rehabilitation considerations for children dependent on long-term mechanical ventilation. ISRN Rehabil. 2012;2012:756103.
Larsson L. Experimental animal models of muscle wasting in intensive care unit patients. Crit Care Med. 2007;35(9):S484-S487.
Paditz E. Self-reported quality of life in home mechanical ventilation in childhood, adolescence and young adulthood: differences between parents and children. Somnologie. 2000;4:13-19.
Downes J, Boroughs DS, Dougherty J, Parra M. A statewide program for home care of children with chronic respiratory failure. Caring. 2007;26(9):16-18.
El Nokali NE, Bachman HJ, Votruba-Drzal E. Parent involvement and children′s academic and social development in elementary school. Child Dev. 2010;81(3):988-1005.
McCormick MP, Cappella E, O′Connor EE, McClowry SG. Parent involvement, emotional support, and behavior problems: an ecological approach. The Elem School J. 2013;114(2):277-300.
Bernier A, Carlson SM, Whipple N. From external regulation to self-regulation: Early parenting precursors of young children′s executive functioning. Child Dev. 2010;81(1):326-339.