Quality of life in children three and nine months after discharge from a paediatric intensive care unit: a prospective cohort study

Health and Quality of Life Outcomes - Tập 6 - Trang 1-9 - 2008
Hendrika Knoester1, Madelon B Bronner2, Albert P Bos1, Martha A Grootenhuis2
1Paediatric Intensive Care Unit, Emma Children's Hospital, Academic Medical Centre, Amsterdam, The Netherlands
2Psychosocial Department, Emma Children’s Hospital, Academic Medical Centre, Amsterdam, The Netherlands

Tóm tắt

Improved survival in children with critical illnesses has led to new disease patterns. As a consequence evaluation of the well being of survivors of Pediatric Intensive Care Units (PICU) has become important. Outcome assessment should therefore consist of evaluation of morbidity, functional health and Health Related Quality of Life (HRQoL). Awareness of HRQoL consequences and physical sequelae could lead to changes in support during the acute phase and thereafter. The aim of this study was to evaluate HRQoL in PICU survivors. Prospective follow-up study three and nine months after discharge from a 14-bed tertiary PICU. Eighty-one of 142 eligible, previously healthy children were included from December 2002 through October 2005. HRQoL was assessed with the TNO-AZL Preschool Children Quality of Life Questionnaire (TAPQOL-PF) for children aged 1 to 6 years of age, the TNO-AZL Children's Quality of Life Questionnaire Parent Form (TACQOL-PF) for children aged 6 to 12 years of age, and the TNO-AZL Children's Quality of Life Questionnaire Child Form (TACQOL-CF) for children aged 8 to 15 years of age. The studied patients were compared with age appropriate normative data using non-parametric tests and effect sizes. Thirty-one and 27 children, and 55 and 50 parents completed questionnaires respectively three and nine months after discharge. In 1–6 year old children parents reported more lung problems (3 and 9 months), worse liveliness (9 months) and better appetite and problem behaviour (3 months); in 6–12 year old children parents reported worse motor functioning (3 months); and 12–15 year old adolescents reported worse motor functioning (3 months). Large effect sizes indicating clinical significant differences in HRQoL with healthy control subjects were found on more domains. In this small group of PICU survivors differences in HRQoL with the normative population exist three and nine months after discharge. Calculated effect sizes were smaller nine months after discharge. These changes suggest that HRQoL improves over time. More research is necessary but we believe that HRQoL assessment should be incorporated in follow-up programs of PICU survivors.

Tài liệu tham khảo

Thorburn K, Baines P, Thomson A, Hart CA: Mortality in severe meningococcal disease. Arch Dis Child 2001, 85: 382–385. 10.1136/adc.85.5.382 Tilford JM, Roberson PK, Lensing S, Fiser DH: Differences in pediatric ICU mortality risk over time. Crit Care Med 1998, 26: 1737–1743. 10.1097/00003246-199810000-00032 Bache CE, Torode IP: Orthopaedic sequelae of meningococcal septicemia. J Pediatr Orthop 2006, 26: 135–139. 10.1097/01.bpo.0000187991.71645.e7 Belthur MV, Bradish CF, Gibbons PJ: Late orthopaedic sequelae following meningococcal septicaemia. A multicentre study. J Bone Joint Surg Br 2005, 87: 236–240. 10.1302/0301-620X.87B2.14827 Eiser C, Morse R: Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 2001, 5: 1–157. Eiser C: Children's quality of life measures. Arch Dis Child 1997, 77: 350–354. Eiser C, Morse R: The measurement of quality of life in children: past and future perspectives. J Dev Behav Pediatr 2001, 22: 248–256. Janse AJ, Uiterwaal CS, Gemke RJ, Kimpen JL, Sinnema G: A difference in perception of quality of life in chronically ill children was found between parents and pediatricians. J Clin Epidemiol 2005, 58: 495–502. 10.1016/j.jclinepi.2004.09.010 Jokovic A, Locker D, Guyatt G: How well do parents know their children? Implications for proxy reporting of child health-related quality of life. Qual Life Res 2004, 13: 1297–1307. 10.1023/B:QURE.0000037480.65972.eb Rajmil L, Herdman M, Fernandez De Sanmamed MJ, Detmar S, Bruil J, Ravens-Sieberer U, Bullinger M, Simeoni MC, Auquier P: Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content. J Adolesc Health 2004, 34: 37–45. 10.1016/S1054-139X(03)00249-0 Varni JW, Burwinkle TM, Lane MM: Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes 2005, 3: 34. 10.1186/1477-7525-3-34 Balluffi A, Kassam-Adams N, Kazak A, Tucker M, Dominguez T, Helfaer M: Traumatic stress in parents of children admitted to the pediatric intensive care unit. Pediatr Crit Care Med 2004, 5: 547–553. 10.1097/01.PCC.0000137354.19807.44 Dahlem P, De Jongh FHC, Griffioen RW, Bos AP, Van Aalderen WMC: Respiratory sequelae after acute hypoxemic respiratory failure in children with meningococcal septic shock. Crit Care Shock 2005, 7: 20–26. Ehrlich TR, Von R I, Grootenhuis MA, Gerrits AI, Bos AP: Long-term psychological distress in parents of child survivors of severe meningococcal disease. Pediatr Rehabil 2005, 8: 220–224. Madagame ET, Havens PL, Bresnahan JM, Babel KL, Splaingard ML: Survival and functional outcome of children requiring mechanical ventilation during therapy for acute bacterial meningitis. Crit Care Med 1995, 23: 1279–1283. 10.1097/00003246-199507000-00019 Rees G, Gledhill J, Garralda ME, Nadel S: Psychiatric outcome following paediatric intensive care unit (PICU) admission: a cohort study. Intensive Care Med 2004, 30: 1607–1614. 10.1007/s00134-004-2310-9 Robertson CM, Joffe AR, Moore AJ, Watt JM: Neurodevelopmental outcome of young pediatric intensive care survivors of serious brain injury. Pediatr Crit Care Med 2002, 3: 345–350. 10.1097/00130478-200210000-00003 Gemke RJ, Bonsel GJ, van Vught AJ: Long-term survival and state of health after paediatric intensive care. Arch Dis Child 1995, 73: 196–201. Jayshree M, Singhi SC, Malhi P: Follow up of survival and quality of life in children after intensive care. Indian Pediatr 2003, 40: 303–309. Jones S, Rantell K, Stevens K, Colwell B, Ratcliffe JR, Holland P, Rowan K, Parry GJ: Outcome at 6 months after admission for pediatric intensive care: a report of a national study of pediatric intensive care units in the United kingdom. Pediatrics 2006, 118: 2101–2108. 10.1542/peds.2006-1455 Taylor A, Butt W, Ciardulli M: The functional outcome and quality of life of children after admission to an intensive care unit. Intensive Care Med 2003, 29: 795–800. Ambuehl J, Karrer A, Meer A, Riedel T, Schibler A: Quality of life of survivors of paediatric intensive care. Swiss Med Wkly 2007, 137: 312–316. Morrison AL, Gillis J, O'Connell AJ, Schell DN, Dossetor DR, Mellis C: Quality of life of survivors of pediatric intensive care. Pediatr Crit Care Med 2002, 3: 1–5. 10.1097/00130478-200201000-00001 Bosch AM, Grootenhuis MA, Bakker HD, Heijmans HS, Wijburg FA, Last BF: Living with classical galactosemia: health-related quality of life consequences. Pediatrics 2004, 113: e423-e428. 10.1542/peds.113.5.e423 Bunge EM, Essink-Bot ML, Kobussen MP, van Suijlekom-Smit LW, Moll HA, Raat H: Reliability and validity of health status measurement by the TAPQOL. Arch Dis Child 2005, 90: 351–358. 10.1136/adc.2003.048645 Fekkes M, Theunissen NC, Brugman E, Veen S, Verrips EG, Koopman HM, Vogels T, Wit JM, Verloove-Vanhorick SP: 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: 961–972. 10.1023/A:1008981603178 Fekkes M, Bruil J, Vogels T: TAPQOL-manual. Leiden: TNO Prevention and Health; 2003. Theunissen NC, Vogels TG, Koopman HM, Verrips GH, Zwinderman KA, Verloove-Vanhorick SP, Wit JM: The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 1998, 7: 387–397. 10.1023/A:1008801802877 Verrips GH, Vogels TGC, Verloove-Vanhorick SP, Fekkes M, Koopman H, Kamphuis RP: Health-related quality of life measure for children - The TACQOL. J Appl Ther 1998, 1: 360. Vogels T, Verrips GH, Koopman HM: TACQOL manual. Parent Form and Child Form.. Leiden: leiden center for Child Health and Pediatric LUMC-TNO; 2000. Vogels T, Bruil J, Koopman H: TACQOL CF 12–15 Manual. Leiden: TNO Prevention and Health; 2004. Cohen J: Statistical power analysis for the behavioral sciences. New York, Academy Press; 1988. Verrips GH, Stuifbergen MC, den Ouden AL, Bonsel GJ, Gemke RJ, Paneth N, Verloove-Vanhorick SP: Measuring health status using the Health Utilities Index: agreement between raters and between modalities of administration. J Clin Epidemiol 2001, 54: 475–481. 10.1016/S0895-4356(00)00317-6 Janse AJ, Gemke RJ, Uiterwaal CS, van T I, Kimpen JL, Sinnema G: Quality of life: patients and doctors don't always agree: a meta-analysis. J Clin Epidemiol 2004, 57: 653–661. 10.1016/j.jclinepi.2003.11.013 De CM, Regier D, Alamgir AH, Anis AH, Fitzgerald MJ, Marra CA: Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics 2005, 23: 659–685. 10.2165/00019053-200523070-00003 Schwartz CE, Sprangers MA: Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Soc Sci Med 1999, 48: 1531–1548. 10.1016/S0277-9536(99)00047-7 Sprangers MA, Schwartz CE: Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med 1999, 48: 1507–1515. 10.1016/S0277-9536(99)00045-3 Board R, Ryan-Wenger N: Long-term effects of pediatric intensive care unit hospitalization on families with young children. Heart Lung 2002, 31: 53–66. 10.1067/mhl.2002.121246