102Chapter 618. <strong>Poley</strong> MJ, Stolk EA, Tibboel D, MolenaarJC, Busschbach JJV: Short term andlong term health related quality of lifeafter congenital anorectalmalformations and congenitaldiaphragmatic hernia. Arch Dis Child2004; 89(9): 836-841.19. <strong>Poley</strong> MJ, Stolk EA, Langemeijer RATM,Molenaar JC, Busschbach JJV: The costeffectivenessof neonatal surgery andsubsequent treatment for congenitalanorectal malformations. J Pediatr Surg2001; 36(10): 1471-1478.20. <strong>Poley</strong> MJ, Stolk EA, Tibboel D, MolenaarJC, Busschbach JJV: The costeffectivenessof treatment forcongenital diaphragmatic hernia. JPediatr Surg 2002; 37(9): 1245-1252.21. Lawoko S, Soares JJF: Quality of lifeamong parents of children withcongenital heart disease, parents ofchildren with other diseases andparents of healthy children. Qual LifeRes 2003; 12(6): 655-666.22. Baronet AM: Factors associated withcaregiver burden in mental illness: acritical review of the research literature.Clin Psychol Rev 1999; 19(7): 819-841.23. Kinsella G, Cooper B, Picton C, MurtaghD: A review of the measurement ofcaregiver and family burden in palliativecare. J Palliat Care 1998; 14(2): 37-45.24. Vitaliano PP, Young HM, Russo J:Burden: a review of measures usedamong caregivers of individuals withdementia. Gerontologist 1991; 31(1):67-75.25. Drummond MF, Mohide EA, Tew M,Streiner DL, Pringle DM, Gilbert JR:Economic evaluation of a supportprogram for caregivers of dementedelderly. Int J Technol Assess HealthCare 1991; 7(2): 209-219.26. Hughes SL, Giobbie-Hurder A, WeaverFM, Kubal JD, Henderson W:Relationship between caregiver burdenand health-related quality of life.Gerontologist 1999; 39(5): 534-545.27. Mohide EA, Torrance GW, Streiner DL,Pringle DM, Gilbert R: Measuring thewellbeing of family caregivers using thetime trade-off technique. J ClinEpidemiol 1988; 41(5): 475-482.28. Roijen Lv, Essink-Bot ML,Koopmanschap MA, Bonsel G, RuttenFFH: Labor and health status ineconomic evaluation of health care. TheHealth and Labor Questionnaire. Int JTechnol Assess Health Care 1996;12(3): 405-415.29. Coons SJ, Rao S, Keininger DL, HaysRD: A comparative review of genericquality-of-life instruments.Pharmacoeconomics 2000; 17(1): 13-35.30. Jenney MEM, Campbell S: Measuringquality of life. Arch Dis Child 1997;77(4): 347-350.31. Brooks R: EuroQol: the current state ofplay. Health Policy 1996; 37(1): 53-72.32. Dolan P: Modeling valuations forEuroQol health states. Med Care 1997;35(11): 1095-1108.33. Kind P, Hardman G, Macran S: UKpopulation norms for EQ-5D. Discussionpaper 172. York: University of York -Centre for Health Economics; 1999.34. Statistics Netherlands: Working andlearning 2000-2001. Facts and figureson the labor market and education inthe Netherlands [in Dutch]. Alphen aanden Rijn: Samsom; 2000.35. Schulman JL: Coping with majordisease: child, family, pediatrician. JPediatr 1983; 102(6): 988-991.36. Staab D, Wenninger K, Gebert N,Rupprath K, Bisson S, Trettin M, et al:Quality of life in patients with cysticfibrosis and their parents: what isimportant besides disease severity?Thorax 1998; 53(9): 727-731.
Informal Care for Children Born with Major Congenital Anomalies 10337. Query JM, Reichelt C, Christoferson LA:Living with chronic illness: aretrospective study of patients shuntedfor hydrocephalus and their families.Dev Med Child Neurol 1990; 32(2):119-128.38. Brehaut JC, Kohen DE, Raina P, WalterSD, Russell DJ, Swinton M, et al: Thehealth of primary caregivers of childrenwith cerebral palsy: how does itcompare with that of other Canadiancaregivers? Pediatrics 2004; 114(2):e182-e191.39. Tong HC, Kandala G, Haig AJ, NelsonVS, Yamakawa KSJ, Shin KY: Physicalfunctioning in female caregivers ofchildren with physical disabilitiescompared with female caregivers ofchildren with a chronic medicalcondition. Arch Pediatr Adolesc Med2002; 156(11): 1138-1142.40. Tong HC, Haig AJ, Nelson VS,Yamakawa KS, Kandala G, Shin KY: Lowback pain in adult female caregivers ofchildren with physical disabilities. ArchPediatr Adolesc Med 2003; 157(11):1128-1133.41. Essink-Bot ML, Krabbe PFM, Bonsel GJ,Aaronson NK: An empirical comparisonof four generic health status measures.The Nottingham Health Profile, theMedical Outcomes Study 36-item Short-Form Health Survey, the COOP/WONCAcharts, and the EuroQol instrument.Med Care 1997; 35(5): 522-537.42. Hollingworth W, Mackenzie R, Todd CJ,Dixon AK: Measuring changes in qualityof life following magnetic resonanceimaging of the knee: SF-36, EuroQol orRosser index? Qual Life Res 1995; 4(4):325-334.43. Myers C, Wilks D: Comparison ofEuroqol EQ-5D and SF-36 in patientswith chronic fatigue syndrome. Qual LifeRes 1999; 8(1-2): 9-16.44. Given BA, Given CW, Helms E, StommelM, DeVoss DN: Determinants of familycare giver reaction. New and recurrentcancer. Cancer Pract 1997; 5(1): 17-24.45. Nijboer C, Triemstra M, Tempelaar R,Sanderman R, van den Bos GAM:Determinants of caregiving experiencesand mental health of partners of cancerpatients. Cancer 1999; 86(4): 577-588.46. Osman LM, Baxter-Jones ADG, HelmsPJ: Parents' quality of life andrespiratory symptoms in young childrenwith mild wheeze. Eur Respir J 2001;17(2): 254-258.47. Cattanach L, Tebes JK: The nature ofelder impairment and its impact onfamily caregivers' health andpsychosocial functioning. Gerontologist1991; 31(2): 246-255.48. Gilhooly MLM: The impact of care-givingon care-givers: factors associated withthe psychological well-being of peoplesupporting a dementing relative in thecommunity. Br J Med Psychol 1984;57(Pt 1): 35-44.49. Warschburger P, Buchholz HT,Petermann F: Psychological adjustmentin parents of young children with atopicdermatitis: which factors predictparental quality of life? Br J Dermatol2004; 150(2): 304-311.50. Brouwer WBF, Exel NJAv,Koopmanschap MA, Rutten FFH: Thevaluation of informal care in economicappraisal. A consideration of individualchoice and societal costs of time. Int JTechnol Assess Health Care 1999;15(1): 147-160.51. Cohn JK: An empirical study of parents'reaction to the diagnosis of congenitalheart disease in infants. Soc WorkHealth Care 1996; 23(2): 67-79.52. Guldemeester HA, Tibboel D, UnikenVenema-Van Uden M, Frets PG,Passchier J, Molenaar JC: Parentalreactions after birth of a child with acongenital anatomical anomaly; anexploratory study [in Dutch]. NedTijdschr Geneeskd 1991; 135(16): 707-710.53. Vernon M: Parental reactions to birthdefectivechildren. Postgrad Med 1979;65(2): 183-190.
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DOCTORAL COMMITTEEPromotors:Prof.dr
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PUBLICATIONSChapters 2 to 7 are bas
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6ChapterINFORMAL CARE FOR CHILDREN
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2Chapter 11.1 BACKGROUND AND MOTIVA
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4Chapter 1provides a good overview
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6Chapter 1disability, and death of
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Introduction 9particular equity pri
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Introduction 1320. Oostenbrink JB,
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Introduction 1554. Heyman MB, Harma
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THE COST-EFFECTIVENESS OFTREATMENT
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Cost-Effectiveness of Treatment for
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Cost-Effectiveness of Treatment for
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Cost-Effectiveness of Treatment for
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Cost-Effectiveness of Treatment for
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Cost-Effectiveness of Treatment for
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Cost-Effectiveness of Treatment for
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Cost-Effectiveness of Treatment for
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36Chapter 3ABSTRACTBackground/Purpo
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38Chapter 33.2 MATERIALS AND METHOD
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40Chapter 3child's date of birth) a
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42Chapter 3diaphragm was closed (Ta
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44Chapter 3Total costs of treatment
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46Chapter 3Regarding the treatment
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48Chapter 3REFERENCES1. Stolk EA, P
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50Chapter 332. Jaillard S, Pierrat
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SAMENVATTING
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Samenvatting 155zoals directe niet-
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Samenvatting 157Hoofdstuk 6 gaat ve
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Samenvatting 159vereisen, waarvoor
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162AcknowledgmentsAlthough I am ind
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About the AuthorBorn in De Meern (N