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