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Health and Quality of Life Outcomes

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Open Access 01-12-2010 | Research

Measuring health-related quality of life in Hungarian children with heart disease: psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales and the Cardiac Module

Authors: Andrea Berkes, István Pataki, Mariann Kiss, Csilla Kemény, László Kardos, James W Varni, Gábor Mogyorósy

Published in: Health and Quality of Life Outcomes | Issue 1/2010

Abstract

Objectives

The aim of the study was to investigate the psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales and Cardiac Module.

Methods

The PedsQL™ 4.0 Generic Core Scales and the PedsQL™ 3.0 Cardiac Module was administered to 254 caregivers of children (aged 2-18 years) and to 195 children (aged 5-18 years) at a pediatric cardiology outpatient unit. A postal survey on a demographically group-matched sample of the general population with 525 caregivers of children (aged 2-18 years) and 373 children (aged 5-18 years) was conducted with the PedsQL™ 4.0 Generic Core Scale. Responses were described, compared over subgroups of subjects, and were used to assess practical utility, distributional coverage, construct validity, internal consistency, and inter-reporter agreement of the instrument.

Results

The moderate scale-level mean percentage of missing item responses (range 1.8-2.3%) supported the feasibility of the Generic Core Scales for general Hungarian children. Minimal to moderate ceiling effects and no floor effects were found on the Generic Core Scales. We observed stronger ceiling than floor effects in the Cardiac Module. Most of the scales showed satisfactory reliability with Cronbach's α estimates exceeding 0.70. Generally, moderate to good agreement was found between self- and parent proxy-reports in the patient and in the comparison group (intraclass correlation coefficient range 0.52-0.77), but remarkably low agreement in the perceived physical appearance subscale in the age group 5-7 years (0.18) and for the treatment II scale (problems on taking heart medicine) scale of the Cardiac Module in children aged 8-12 years (0.39). Assessing the construct validity of the questionnaires, statistically significant difference was found between the patient group and the comparison group only in the Physical Functioning Scale scores (p = 0.003) of the child self-report component, and in Physical (p = 0.022), Emotional, (p = 0.017), Psychosocial Summary (p = 0.019) scores and in the total HRQoL (health-related quality of life) scale score (p = 0.034) for parent proxy-report.

Conclusion

The findings generally support the feasibility, reliability and validity of the Hungarian translation of the PedsQL™ 4.0 Generic Core Scales and the PedsQL™ 3.0 Cardiac Module in Hungarian children with heart disease.

Eiser C: Psychological effects of chronic disease. Journal of Child Psychology and Psychiatry 1990, 31: 85–98. 10.1111/j.1469-7610.1990.tb02274.xPubMedCrossRef

Costello EJ, Edelbrock C, Costello AJ, Dulcan MK, Burns BJ, Brent D: Psychopathology in pediatric primary care: The new hidden morbidity. Pediatrics 1988, 82: 415–424.PubMed

Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, 1946 Official Records of the World Health Organization, no. 2 100.

Theunissen NC, Vogels TG: The proxy problem: child report versus parent report in health-related quality of life research. Quality of Life Research 1988, 7: 387–397. 10.1023/A:1008801802877CrossRef

Starfield B, Bergner M: Adolescent Health Status Measurement: Development of the Child Health and Illness Profile. Pediatrics 1993, 91: 430–435.PubMed

Cummings RA: Assessing quality of life. In Quality of life for people with disabilities. Edited by: Brown RI. London: Stanley Thornes Ltd; 1997:116–150.

Eiser C, Morse R: A review of measures of QOL for children with chronic illness. Archives of Diseases in Childhood 2001, 84: 205–211. 10.1136/adc.84.3.205CrossRef

Vetró Á, Kiss E: Az életminõség vizsgálata gyermek-és serdülõkorban. Psychiatria Hungarica 2003, 18: 408–417.

Varni JW, Burwinkle TM, Seid M, Skarr D: The PedsQL™ 4.0 as a Pediatric Population Health Measure: Feasibility, Reliability and Validity. Ambulatory Pediatrics 2003, 3: 329–341. 10.1367/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2PubMedCrossRef

10.

Creemens J, Eiser C, Blades M: Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory™ 4.0 (PedsQL) generic core scales. Health and Quality of Life Outcomes 2006, 4: 58. 10.1186/1477-7525-4-58CrossRef

11.

Varni JW, Limbers CA, Burwinkle TM: How young can children reliably and validly self-report their health-related quality of life?: An analysis of 8,591 children across subgroups with PedsQL™ 4.0 Generic Core Scales. Health and Quality of Life Outcomes 2007, 5: 1–27. 10.1186/1477-7525-5-1PubMedCentralPubMedCrossRef

12.

Cadman D, Boyle M, Szatmari P, Offord DR: Chronic Illness, Disability and Mental Social Well-being: Findings of the Ontario Child Health Study. Pediatrics 1987, 79: 805–13.PubMed

13.

Varni JW, Quiggins DJL, Guadalupe XA: Development of the Pediatric Hematology/Oncology Parent Satisfaction Survey. Children's Health Care 2000, 29: 243–255. 10.1207/S15326888CHC2904_2CrossRef

14.

Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P: The PedsQL™ in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer 2002, 94: 2090–106. 10.1002/cncr.10428PubMedCrossRef

15.

Varni JW, Seid M, Knight TS, Uzark K, Szer IS: The PedsQL™ 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making. Journal of Behavioral Medicine 2002, 25: 175–193. 10.1023/A:1014836921812PubMedCrossRef

16.

Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M, Kaufman M, Jones KL: The PedsQL™ in Type 1 and Type 2 Diabetes. Diabetes Care 2003, 26: 631–637. 10.2337/diacare.26.3.631PubMedCrossRef

17.

Uzark K, Jones K: The Pediatric Quality of Life Inventory in children with heart disease. Progress in Pediatric Cardiology 2003, 18: 141–148. 10.1016/S1058-9813(03)00087-0CrossRef

18.

Seid M, Varni JW, Segall D, Kurtin P: Health-related quality of life as a predictor of pediatric healthcare costs: A two-year prospective cohort analysis. Health Qual Life Outcomes 2004, 2: 48. 10.1186/1477-7525-2-48PubMedCentralPubMedCrossRef

19.

Macran S, Birks Y, Parsons : The development of a new measure of quality of life for children with congenital heart disease. Cardiology in the Young 2006, 16: 65–172. 10.1017/S1047951106000102CrossRef

20.

Varni JW, Limbers CA, Burwinkle TM: Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL™ 4.0 Generic Core Scales. Health and Quality of Life Outcomes 2007, 16: 5.

21.

Cohen M, Mansoor D, Langut H, Lorber A: Quality of life, Depressed Mood, and Self-Esteem in Adolescents with Heart Disease. Psychosomatic Medicine 2007, 69: 313–318. 10.1097/PSY.0b013e318051542cPubMedCrossRef

22.

Goldstein SR, Graham N, Warady BA, Seikaly M, McDonald R, Burwinkle TM, Limbers CA, Varni JW: Measuring health-related quality of life in children with ESRD: performance of the generic and ESRD-specific instrument of the Pediatric Quality of Life Inventory (PedsQL). American Journal of Kidney Diseases 2008, 51: 285–97. 10.1053/j.ajkd.2007.09.021PubMedCrossRef

23.

Uzark K, Jones K, Slusher J, Limbers CA, Burwinkle TM, Varni JW: Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008, 121: 1060–1067. 10.1542/peds.2006-3778CrossRef

24.

Moons P, Van Deyk K, De Geest S, Gewillig M, Budts W: Is the severity of congenital heart disease associated with the quality of life and perceived health of adult patients? Heart 2005, 91: 1193–1198. 10.1136/hrt.2004.042234PubMedCentralPubMedCrossRef

25.

Birks Y, Sloper P, Lewin R, Parsons J: Exploring health-related experiences of children and young people with congenital heart disease. Health Expectations 2007, 10: 16–29. 10.1111/j.1369-7625.2006.00412.xPubMedCrossRef

26.

Daliento L, Mapelli D, Volpe B: Measurement of cognitive outcome and quality of life in congenital heart disease. Heart 2006, 92: 569–574. 10.1136/hrt.2004.057273PubMedCentralPubMedCrossRef

27.

Brosig CL, Mussato KA, Kuhn EM, Tweddell JS: Psychosocial Outcomes for Preschool Children and Families After Surgery for complex Congenital Heart Disease. Pediatric Cardiology 2007, 28: 255–262. 10.1007/s00246-006-0013-4PubMedCrossRef

28.

Kopp M, Skrabski A, Szántó Z, Siegrist J: Psychosocial determinants of premature cardiovascular mortality differences within Hungary. Journal of Epidemiology and Community Health 2006, 60: 782–8. 10.1136/jech.2005.042960PubMedCentralPubMedCrossRef

29.

Kopp MS, Skrabski A, Székely A, Stauder A, Williams R: Chronic stress and social changes: socioeconomic determination of chronic stress. Annals of the New York Academy of Sciences 2007, 1113: 325–38. 10.1196/annals.1391.006PubMedCrossRef

30.

Felder-Puig R, Frey E, Proksch K, Varni JW, Gadner H, Topf R: Validation of the German version of the Pediatric Quality of Life Inventory™ (PedsQL™) in childhood cancer patients off treatment and children with epilepsy. Quality of Life Research 2004, 13: 223–234. 10.1023/B:QURE.0000015305.44181.e3PubMedCrossRef

31.

Upton P, Eiser C, Cheung I, Hutchings HA, Jenney M, Maddocks A, Russell I, Williams JG: Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory™ 4.0 generic core scales. Health and Quality of Life Outcomes 2005, 3: 22. 10.1186/1477-7525-3-22PubMedCentralPubMedCrossRef

32.

Reinfjell T, Diseth TH, Veenstra M, Vikan A: Measuring health-related quality of life in young adolescents: Reliability and validity in the Norwegian version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) generic core scales. Health and Quality of Life Outcomes 2006, 4: 61. 10.1186/1477-7525-4-61PubMedCentralPubMedCrossRef

33.

Gkoltsiou K, Dimitrakaki C, Tzavara C, Papaevangelou V, Varni JW, Tountas Y: Measuring health-related quality of life in Greek children: psychometric properties of the Greek version of the Pediatric Quality of life Inventory™ 4.0 Generic Core Scales. Quality of Life Research 2008, 17: 299–305. 10.1007/s11136-007-9294-1PubMedCrossRef

34.

Chen X, Origasa H, Ichida F, Kamibeppu K, Varni JW: Reliability and validity of the Pediatric Quality of Life Inventory™ (PedsQL™) Short Form 15 Generic Core Scales in Japan. Quality of Life Research 2007, 16: 1239–1249. 10.1007/s11136-007-9230-4PubMedCrossRef

35.

Seung Hee Kook , Varni JW: validation of the Korean version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core Scales in school children and adolescents using the Rasch model. Health and Quality of Life Outcomes 2008, 6: 41. 10.1186/1477-7525-6-41PubMedCentralPubMedCrossRef

36.

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. Medical Care 2001, 39: 800–12. 10.1097/00005650-200108000-00006PubMedCrossRef

37.

Bastiaansen D, Koot HM, Bongers IL, Varni JW, Verhulst FC: Measuring quality of life in children referred for psychiatric problems: Psychometric properties of the PedsQL™ 4.0 generic core scales. Quality of Life Research 2004, 13: 489–495. 10.1023/B:QURE.0000018483.01526.abPubMedCrossRef

38.

Varni JW, Burwinkle TM, Sherman SA, Hanna K, Berrin SJ, Malcarne VL, Chambers HG: Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children. Developmental Medicine and Child Neurology 2005, 47: 592–7. 10.1017/S0012162205001179PubMedCrossRef

39.

Roizen M, Rodríguez S, Bauer G, Medin G, Bevilacqua S, Varni JW, Dussel V: Initial validation of the Argentinean Spanish version of the PedsQL 4.0 Generic Core Scales in children and adolescents with chronic diseases: acceptability and comprehensibility in low-income settings. Health Qual Life Outcomes 2008,7(6):-59.CrossRef

40.

Warnes CA, Liberthson R, Danielson GK, et al.: Bethesda Conference Report Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001, 37: 1170–5. 10.1016/S0735-1097(01)01272-4PubMedCrossRef

41.

Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P: The PedsQL™ Family Impact Module: Preliminary reliability and validity. Health and Quality of Life Outcomes 2004, 2: 55. 10.1186/1477-7525-2-55PubMedCentralPubMedCrossRef

42.

Varni JW, Seid M, Rode CA: The PedsQL™: measurement model for the pediatric quality of life inventory. Medical Care 1999, 37: 126–39. 10.1097/00005650-199902000-00003PubMedCrossRef

43.

Hui C, Triandis HC: Measurement in cross-cultural psychology, a review and comparison of strategies. Cross Cultural Psychology 1985, 16: 131–150. 10.1177/0022002185016002001CrossRef

44.

Herdman M, Fox-Rushby J, Badia X: A model of equivalence in the cultural adaptation of HRQL instruments: the universalist approach. Quality of Life Research 1998, 7: 323–335. 10.1023/A:1008846618880PubMedCrossRef

45.

Bullinger M, Andreson R: Developing and evaluating cross-cultural instruments from minimal requirements to optimal models. Quality of Life Research 1993, 2: 451–459. 10.1007/BF00422219PubMedCrossRef

46.

Harris-Kojetin LD, Fowler FJ, Brown JA, Schnaier JA, Sweeny SF: The Use of Cognitive Testing to Develop and Evaluate CAHPS™1.0 Core Survey Items. Medical Care 1999,37(Suppl):MS10-MS21. 10.1097/00005650-199903001-00002PubMed

47.

Wild D, Grove A, Martin M, Ermenco S, McElroy S, Verjee-Lorenz A, Erickson P: Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) Measures: Report of ISPOR Task Force for Translation and Cultural Adaptation. Value in Health 2005, 8: 94–104. 10.1111/j.1524-4733.2005.04054.xPubMedCrossRef

48.

Cohen J: Statistical Power Analysis for the Behavioral Sciences. New Jersey: Lawrence Erlbaum Associates; 1988.

49.

Bartko JJ: The intraclass correlation coefficient as a measure of reliability. Psychological Methods 1966, 1: 30–46.

50.

Bland JM, Altman DG: Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1986, 1: 307–310.PubMedCrossRef

51.

DeMaso DR, Lauretti A, Spieth L, Feen JR, Jay KS, Gauvreau K, Walsh EP, Berul CI: Psychosocial Factors and Quality of life in Children and Adolescents with Implantable Cardioverter-Defibrillators. American Journal of Cardiology 2004, 93: 582–587. 10.1016/j.amjcard.2003.11.022PubMedCrossRef

52.

Ternstedt BM, Wall K: Quality of life 20 and 30 years after surgery in patients operated for tetralogy of Fallot and for atrial septal defect. Pediatric Cardiology 2001, 22: 128–132. 10.1007/s002460010178CrossRef

53.

Lane DA, Lip GYH, Millane TA: Quality of Life in adults with congenital heart disease. Heart 2002, 88: 71–75. 10.1136/heart.88.1.71PubMedCentralPubMedCrossRef

54.

Casey FA, Craig BG, Mulholland HC: Quality of life in surgically palliated complex congenital heart disease. Archives of Diseases in Childhood 1994, 70: 382–386. 10.1136/adc.70.5.382CrossRef

55.

Boekaerts M, Röder I: Stress, coping, and adjustment in children with a chronic disease: a review of the literature. Disability and Rehabilitation 1999, 21: 311–37. 10.1080/096382899297576PubMedCrossRef

56.

Russell KM, Hudson M, Long A, Phipps S: Assessment of health-related quality of life in children with cancer: consistency and agreement between parent and child reports. Cancer 2006, 15: 2267–74. 10.1002/cncr.21871CrossRef

57.

Upton P, Lawford J, Eiser C: Parent-child agreement across child health-related quality of life instruments: a review of the literature. Quality of Life Research 2008, 17: 895–913. 10.1007/s11136-008-9350-5PubMedCrossRef

58.

Stewart JL: Children living with chronic illness: an examination of their stressors, coping responses, and health outcomes. Annual Review of Nursing Research 2003, 21: 203–43.PubMed

59.

Curtis CE, Luby JL: Depression and social functioning in preschool children with chronic medical conditions. Journal of Pediatrics 2008, 153: 408–13. 10.1016/j.jpeds.2008.03.035PubMedCentralPubMedCrossRef

60.

Piko BF, Fitzpatrick KM: Socioeconomic status, psychosocial health and health behaviours among Hungarian adolescents. European Journal of Public Health 2007, 17: 353–60. 10.1093/eurpub/ckl257PubMedCrossRef

61.

Piko BF: Self-perceived health among adolescents: the role of gender and psychosocial factors. European Journal of Pediatrics 2007, 166: 701–8. 10.1007/s00431-006-0311-0PubMedCrossRef

62.

Kopp M, Pikó B: Az egészséggel kapcsolatos életminõség pszichológiai, szociológiai és kulturális dimenziói. In A magyar népesség életminõsége az ezredfordulón. Edited by: Kopp M, Kovács ME. Budapest: Semmelweis Kiadó; 2006:10–17.

63.

Stolk EA, Busschbach JanJV: Performance of the Euroqol in children with imperforate anus. Quality of Life Research 2000, 9: 29–38. 10.1023/A:1008923029886PubMedCrossRef

64.

Varni JW, Burwinkle TM: The PedsQL™ as a patient-reported outcome in children and adolescents with Attention-Deficit/Hyperactivity Disorder: a population-based study. Health Qual Life Outcomes 2006, 21: 4–26.

65.

Rianthavorn P, Ettenger RB: Medication non-adherence in the adolescent renal transplant recipient: a clinician's viewpoint. Pediatric Transplantation 2005, 9: 398–407. 10.1111/j.1399-3046.2005.00358.xPubMedCrossRef

66.

McAllister S, Buckner EB, White-Williams C: Medication adherence after heart transplantation: adolescents and their issues. Progress in Transplantation 2006, 16: 317–23.PubMedCrossRef

67.

de Benedictis D, Bush A: The challenge of asthma in adolescence. Pediatric Pulmonology 2007, 42: 683–92. 10.1002/ppul.20650PubMedCrossRef

68.

Davis E, Nicolas C, Waters E, Cook K, Gibbs L, Gosch A, Ravens-Sieberer U: Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance. Quality of Life Research 2007, 16: 863–871. 10.1007/s11136-007-9187-3PubMedCrossRef

69.

Krol Y, Grootenhuis MA, Destrée-Vonk A: Quality of life in children with congenital heart disease. Psychology and Health 2003, 18: 251–260. 10.1080/0887044021000058076CrossRef

70.

Ravens-Sieberer U, Auquier P, Erhart M, Gosch A, Rajmil L, Bruil J, Power M, Duer W, Cloetta B, Czemy L, Mazur J, Czimbalmos A, Tountas Y, Hagquist C, Kilroe J: European KIDSCREEN: The KIDSCREEN-27 quality of life measure for children and adolescents. psychometric results from a cross-cultural survey in 13 European countries Quality of Life Research 2007, 16: 1347–1356.PubMed

71.

PedsQL™ [http://www.pedsql.org]

Title: Measuring health-related quality of life in Hungarian children with heart disease: psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales and the Cardiac Module
Authors: Andrea Berkes
István Pataki
Mariann Kiss
Csilla Kemény
László Kardos
James W Varni
Gábor Mogyorósy
Publication date: 01-12-2010
Publisher: BioMed Central
Published in: Health and Quality of Life Outcomes / Issue 1/2010
Electronic ISSN: 1477-7525
DOI: https://doi.org/10.1186/1477-7525-8-14

ACC 2024 Congress

Springer Medicine

Measuring health-related quality of life in Hungarian children with heart disease: psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales and the Cardiac Module

Abstract

Objectives

Methods

Results

Conclusion

ACC 2024 Congress

Springer Medicine

Abstract

Objectives

Methods

Results

Conclusion

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