Skip to main content
Top
Published in: Health and Quality of Life Outcomes 1/2013

Open Access 01-12-2013 | Research

Health related quality of life of children with rheumatic heart diseases: reliability of the Brazilian version of the pediatric quality of life inventory™ cardiac module scale

Authors: Anabela do Nascimento Moraes, Maria Teresa Ramos Ascensão Terreri, Maria Odete Esteves Hilário, Cláudio Arnaldo Len

Published in: Health and Quality of Life Outcomes | Issue 1/2013

Login to get access

Abstract

Background

This study aimed to translate the ‘Pediatric Quality of Life Inventory™ (PedsQL™ 3.0) Cardiac Module’ into Portuguese, adapt it to Brazilian culture, and assess its psychometric properties (validity and reproducibility), and to calculate health-related quality of life scores on the PedsQL 4.0 and PedsQL™ 3.0 Cardiac Module Scales for a group of patients 5 to 18 years old with rheumatic heart disease.

Methods

The methods suggested by the authors of the original version of the questionnaire included 1) translation by an expert panel; 2) translation back into English and revision by the authors of the original version; 3) pilot study with seven children and parents in each of three age ranges (5 to 7, 8 to 12, and 13 to 18 years old); and 4) assessment of the measurement properties. In this stage, the PedsQL™ 3.0 Cardiac Module and the PedsQL 4.0 Generic Scale were applied to a sample comprising 109 children and adolescents with rheumatic heart disease and their parents or caregivers. The version for parents or caregivers was administered separately on the same day.

Results

The values of Cronbach’s alpha for all scales assessed in the questionnaire (heart problems and treatment [symptoms], problems with perceived physical appearance, treatment anxiety, cognitive problems, and communication problems) varied from 0.6 to 0.8, indicating good internal consistency. Correlation was found between the scores for the Cardiac Module and the Generic Scale (0.36-0.86), demonstrating convergent validity (Spearman’s correlation coefficient, p < 0.01). The symptoms, problems with perceived physical appearance, and cognitive and communication problem domains were able to distinguish between groups of patients with mild and moderate/severe heart disease (Student’s t-test, p < 0.05). The intraclass correlation of the interobserver reproducibility was adequate (0.76 to 0.94 among the patients [children/adolescents] and 0.76 to 0.84 among their caregivers). The correlation between the patients’ scores and their parents’ scores varied from 0.50 to 0.86 (Pearson’s correlation coefficient, p < 0.01).

Conclusions

The Brazilian version of the PedsQL™ 3.0 Cardiac Module was shown to be reliable. The application of this questionnaire in practice will be very useful for all professionals charged with the care of children and adolescents with heart diseases.
Literature
1.
go back to reference Achutti A, Achutti VR: Epidemiology of rheumatic fever in the developing world. Cardiol Young 1992, 2: 206–215.CrossRef Achutti A, Achutti VR: Epidemiology of rheumatic fever in the developing world. Cardiol Young 1992, 2: 206–215.CrossRef
2.
go back to reference Carapetis JR, Steer AC, Mulholland EK: The global burden of group A streptococcal disease. Lancet Infec Dis 2005, 5: 685-–694. 10.1016/S1473-3099(05)70267-XCrossRef Carapetis JR, Steer AC, Mulholland EK: The global burden of group A streptococcal disease. Lancet Infec Dis 2005, 5: 685-–694. 10.1016/S1473-3099(05)70267-XCrossRef
3.
go back to reference Carapetis JR, McDonald M, Wilson NJ: Acute rheumatic fever. Lancet 2005, 366: 156–168. Carapetis JR, McDonald M, Wilson NJ: Acute rheumatic fever. Lancet 2005, 366: 156–168.
4.
go back to reference Brosig CL, Mussatto KA, Kuhn EM, Tweddell JS: Psychosocial outcomes for preschool children and families after surgery congenital heart disease. Pediatr Cardiol 2007, 28: 255–262. 10.1007/s00246-006-0013-4PubMedCrossRef Brosig CL, Mussatto KA, Kuhn EM, Tweddell JS: Psychosocial outcomes for preschool children and families after surgery congenital heart disease. Pediatr Cardiol 2007, 28: 255–262. 10.1007/s00246-006-0013-4PubMedCrossRef
5.
go back to reference Uzark K, Jones K, Slusher J, Limberts CA, Burwinkle TM: Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008, 121: e1060-e1067. 10.1542/peds.2006-3778PubMedCrossRef Uzark K, Jones K, Slusher J, Limberts CA, Burwinkle TM: Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008, 121: e1060-e1067. 10.1542/peds.2006-3778PubMedCrossRef
6.
go back to reference Berkes A, Varni JW, Pataki I, Kardos Kemeny C, Mogyorosy G: Measuring health-related quality of life in Hungarian children attending a cardiology clinic with the pediatric quality of life inventory. Eur J Pediatr 2010, 169: 337–347.CrossRef Berkes A, Varni JW, Pataki I, Kardos Kemeny C, Mogyorosy G: Measuring health-related quality of life in Hungarian children attending a cardiology clinic with the pediatric quality of life inventory. Eur J Pediatr 2010, 169: 337–347.CrossRef
7.
go back to reference 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 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
8.
go back to reference Cohen M, Mansoor D, Langut H, Lorber A: Quality of life, depressed mood, self-esteem in adolescents with heart disease. Psychosom Med 2007, 69: 313–318. 10.1097/PSY.0b013e318051542cPubMedCrossRef Cohen M, Mansoor D, Langut H, Lorber A: Quality of life, depressed mood, self-esteem in adolescents with heart disease. Psychosom Med 2007, 69: 313–318. 10.1097/PSY.0b013e318051542cPubMedCrossRef
9.
go back to reference Mathle WT, Spray TL, Wernovsky G, Gaynor JW, Clark BJ 3rd: Survival after reconstructive surgery for hypoplastic left syndrome: a 15-year experience from a single institution. Circulation 2000, 102: 136–141. Mathle WT, Spray TL, Wernovsky G, Gaynor JW, Clark BJ 3rd: Survival after reconstructive surgery for hypoplastic left syndrome: a 15-year experience from a single institution. Circulation 2000, 102: 136–141.
10.
go back to reference Allen SW, Gauvreau K, Bloom BT, Jenkins KJ: Evidence-base referral results in significantly reduced mortality after congenital heart surgery. Pediatrics 2003, 112: 24–28. 10.1542/peds.112.1.24PubMedCrossRef Allen SW, Gauvreau K, Bloom BT, Jenkins KJ: Evidence-base referral results in significantly reduced mortality after congenital heart surgery. Pediatrics 2003, 112: 24–28. 10.1542/peds.112.1.24PubMedCrossRef
11.
go back to reference Schultz AH, Wernovsky G: Late outcomes in patients with surgically treated congenital heart disease. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2005, 1: 145–156.CrossRef Schultz AH, Wernovsky G: Late outcomes in patients with surgically treated congenital heart disease. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2005, 1: 145–156.CrossRef
12.
go back to reference Driscoll DJ, Durongpisitkul K: Exercise testing after the Fontan operation. Pediatr Cardiol 1999, 20: 57–59. 10.1007/s002469900397PubMedCrossRef Driscoll DJ, Durongpisitkul K: Exercise testing after the Fontan operation. Pediatr Cardiol 1999, 20: 57–59. 10.1007/s002469900397PubMedCrossRef
13.
go back to reference Mahle WT, Clancy RR, Moss E, Gerds M, Jobes DR, Wernovsky G: Neurodevelopmental outcomes and lifestyle assessment in school-age and adolescents children with hypoplastic left heart syndrome. Pediatrics 2000, 105: 1082–1089. 10.1542/peds.105.5.1082PubMedCrossRef Mahle WT, Clancy RR, Moss E, Gerds M, Jobes DR, Wernovsky G: Neurodevelopmental outcomes and lifestyle assessment in school-age and adolescents children with hypoplastic left heart syndrome. Pediatrics 2000, 105: 1082–1089. 10.1542/peds.105.5.1082PubMedCrossRef
14.
go back to reference Kamphuis M, Ottenkam J, Vliegen HW, Vogels T, Zwinderman KH, Kamphuis RP, Verloove-Vanhorick SP: Health related quality of life and health status in adult survivors with previously operated complex congenital heart disease. Heart 2002, 87: 356–362. 10.1136/heart.87.4.356PubMedCentralPubMedCrossRef Kamphuis M, Ottenkam J, Vliegen HW, Vogels T, Zwinderman KH, Kamphuis RP, Verloove-Vanhorick SP: Health related quality of life and health status in adult survivors with previously operated complex congenital heart disease. Heart 2002, 87: 356–362. 10.1136/heart.87.4.356PubMedCentralPubMedCrossRef
15.
go back to reference 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. 10.1186/1477-7525-3-34PubMedCentralPubMedCrossRef 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. 10.1186/1477-7525-3-34PubMedCentralPubMedCrossRef
16.
go back to reference Uzark K, Jones K, Burwinkle TM, Varni JW: The pediatric quality of life inventory™ in children with heart disease. Prog Pediatr Cardiol 2003, 18: 141–148. 10.1016/S1058-9813(03)00087-0CrossRef Uzark K, Jones K, Burwinkle TM, Varni JW: The pediatric quality of life inventory™ in children with heart disease. Prog Pediatr Cardiol 2003, 18: 141–148. 10.1016/S1058-9813(03)00087-0CrossRef
17.
go back to reference Berkes A, Pataki I, Kiss M, Kemény C, Kardos L, Varni JW, Mogyorósy G: Measuring health-related quality of life in Hungarian children version of the pediatric quality of life inventory™ 4.0 generic core scales and the cardiac module. Health Qual Life Outcomes 2010, 8: 14. 10.1186/1477-7525-8-14PubMedCentralPubMedCrossRef Berkes A, Pataki I, Kiss M, Kemény C, Kardos L, Varni JW, Mogyorósy G: Measuring health-related quality of life in Hungarian children version of the pediatric quality of life inventory™ 4.0 generic core scales and the cardiac module. Health Qual Life Outcomes 2010, 8: 14. 10.1186/1477-7525-8-14PubMedCentralPubMedCrossRef
19.
go back to reference Dajani AS, Ayoub E, Bierman FZ: Special writing group of the committee on rheumatic fever, endocarditis, and Kawasaki disease of the council on cardiovascular disease in the young of American Heart Association. Guidelines for the diagnosis of rheumatic fever – Jones criteria, 1992 update. JAMA 1992, 268: 2069–2073. 10.1001/jama.1992.03490150121036CrossRef Dajani AS, Ayoub E, Bierman FZ: Special writing group of the committee on rheumatic fever, endocarditis, and Kawasaki disease of the council on cardiovascular disease in the young of American Heart Association. Guidelines for the diagnosis of rheumatic fever – Jones criteria, 1992 update. JAMA 1992, 268: 2069–2073. 10.1001/jama.1992.03490150121036CrossRef
20.
go back to reference Feigenbaum H: Echocardiography: 4th ed. Philadelphia: Lea & Febiger; 1986. Feigenbaum H: Echocardiography: 4th ed. Philadelphia: Lea & Febiger; 1986.
21.
go back to reference Assef JE, Barreto RBM, Barreto SNSM: Avaliação dopplerecocardiográfica das lesões mitrais e aórticas: a prática diária, do modo M ao transesofágico [Doppler echocardiographic assessment of mitral and aortic injuries: daily practice from M- to transesophageal modes]. Rev Soc Cardiol Estado de São Paulo 1997, 7: 547–568. Assef JE, Barreto RBM, Barreto SNSM: Avaliação dopplerecocardiográfica das lesões mitrais e aórticas: a prática diária, do modo M ao transesofágico [Doppler echocardiographic assessment of mitral and aortic injuries: daily practice from M- to transesophageal modes]. Rev Soc Cardiol Estado de São Paulo 1997, 7: 547–568.
23.
go back to reference Décourt LV: Doença reumática [Rheumatic disease]. 2nd edition. São Paulo: Savier; 1972. Décourt LV: Doença reumática [Rheumatic disease]. 2nd edition. São Paulo: Savier; 1972.
24.
go back to reference Markowitz M, Gordis L: Rheumatic Fever. 2nd edition. Philadelphia: WB Saunders; 1972. Markowitz M, Gordis L: Rheumatic Fever. 2nd edition. Philadelphia: WB Saunders; 1972.
25.
go back to reference George G, Marllery P: SPSS for Windows step by step: a simple guide and reference, 11.0 update. 4th ed. Boston: Allyn & Bacon; 2003. George G, Marllery P: SPSS for Windows step by step: a simple guide and reference, 11.0 update. 4th ed. Boston: Allyn & Bacon; 2003.
27.
go back to reference Bartko JJ: The intraclass correlation coefficient as a measure of reliability. Psychol Reports 1996, 19: 3–11.CrossRef Bartko JJ: The intraclass correlation coefficient as a measure of reliability. Psychol Reports 1996, 19: 3–11.CrossRef
28.
go back to reference Wilson KA, Dowling AJ, Abdolell M, Tannock IF: Perception of quality of life by patients, partners and treating physicians. Qual Life Res 2001, 9: 1041–1052.CrossRef Wilson KA, Dowling AJ, Abdolell M, Tannock IF: Perception of quality of life by patients, partners and treating physicians. Qual Life Res 2001, 9: 1041–1052.CrossRef
29.
go back to reference Varni JW, Seid M, Kurtin PS: The PedsQL™ 4.0: reliability and validity of the pediatric quality of life inventory™ version 4.0 generic core scales in healthy and patient populations. Med Care 2001, 39: 800–812. 10.1097/00005650-200108000-00006PubMedCrossRef Varni JW, Seid M, Kurtin PS: The PedsQL™ 4.0: reliability and validity of the pediatric quality of life inventory™ version 4.0 generic core scales in healthy and patient populations. Med Care 2001, 39: 800–812. 10.1097/00005650-200108000-00006PubMedCrossRef
30.
go back to reference Ministério da Saúde Epidemiological data – Medical assistance]. In Doenças Cardiovasculares no Brasil. Sistema Único de Saúde – SUS. Dados epidemiológicos – Assistência Médica [Cardiovascular diseases in Brazil. Unified Health System. Brasília/DF: MS; 2003. Ministério da Saúde Epidemiological data – Medical assistance]. In Doenças Cardiovasculares no Brasil. Sistema Único de Saúde – SUS. Dados epidemiológicos – Assistência Médica [Cardiovascular diseases in Brazil. Unified Health System. Brasília/DF: MS; 2003.
31.
go back to reference Klatcholan DA, Len CA, Terreri MTRA, Silva M, Itamoto C, Ciconelli RZ, Varni JW, Hilário MOE: Quality of life children and adolescents from São Paulo: reliability and validity of Brazilian version of the pediatric quality of life inventory™ version 4.0 generic core scales. J Pediatr 2008, 84: 308–315. Klatcholan DA, Len CA, Terreri MTRA, Silva M, Itamoto C, Ciconelli RZ, Varni JW, Hilário MOE: Quality of life children and adolescents from São Paulo: reliability and validity of Brazilian version of the pediatric quality of life inventory™ version 4.0 generic core scales. J Pediatr 2008, 84: 308–315.
32.
go back to reference DeMaso DR, Lauretti A, Spieth L, van der Feen JR, Jay KS, Gauvreau K, Walsh EP, Berul CL: Psychosocial factors and quality of life in children and adolescents with implantable cardioverter-defibrillators. Am J Cardiol 2004, 93: 582–587. 10.1016/j.amjcard.2003.11.022PubMedCrossRef DeMaso DR, Lauretti A, Spieth L, van der Feen JR, Jay KS, Gauvreau K, Walsh EP, Berul CL: Psychosocial factors and quality of life in children and adolescents with implantable cardioverter-defibrillators. Am J Cardiol 2004, 93: 582–587. 10.1016/j.amjcard.2003.11.022PubMedCrossRef
33.
go back to reference Costello EJ, Edelbrock C, Costello AJ, Dulcan MK, Burns BJ, Brent D: Psychopathology in pediatric primary care: the new hidden morbidity. Pediatrics 1998, 82: 415–424. Costello EJ, Edelbrock C, Costello AJ, Dulcan MK, Burns BJ, Brent D: Psychopathology in pediatric primary care: the new hidden morbidity. Pediatrics 1998, 82: 415–424.
34.
go back to reference Birkes Y, Sloper P, Lewin R, Parsons J: Exploring health-related experiences of children and young people with congenital heart disease. Health Expect 2007, 10: 16–29. 10.1111/j.1369-7625.2006.00412.xCrossRef Birkes Y, Sloper P, Lewin R, Parsons J: Exploring health-related experiences of children and young people with congenital heart disease. Health Expect 2007, 10: 16–29. 10.1111/j.1369-7625.2006.00412.xCrossRef
35.
go back to reference Li T, Lin C, Liu C, Li C, Lee Y: Validation of Chinese version of the diabetes impact measurement scales amongst people suffering from diabetes. Qual Life Research 2006, 15: 1613–1619. 10.1007/s11136-006-0024-xCrossRef Li T, Lin C, Liu C, Li C, Lee Y: Validation of Chinese version of the diabetes impact measurement scales amongst people suffering from diabetes. Qual Life Research 2006, 15: 1613–1619. 10.1007/s11136-006-0024-xCrossRef
36.
go back to reference Scarpelli AC, Paiva SM, Pordeus IA, Ramos-Jorge ML, Varni JM, Allison PJ: Measurement properties of the Brazilian version of the pediatric quality of life inventory (PedsQL™) cancer module scale. Health Qual Life Outcomes 2008, 6: 7. 10.1186/1477-7525-6-7PubMedCentralPubMedCrossRef Scarpelli AC, Paiva SM, Pordeus IA, Ramos-Jorge ML, Varni JM, Allison PJ: Measurement properties of the Brazilian version of the pediatric quality of life inventory (PedsQL™) cancer module scale. Health Qual Life Outcomes 2008, 6: 7. 10.1186/1477-7525-6-7PubMedCentralPubMedCrossRef
37.
go back to reference Casey FA, Craig BG, Mulholland HC: Quality of life surgically palliated complex congenital heart disease. Arch Dis Childhood 1994, 70: 382–386. 10.1136/adc.70.5.382CrossRef Casey FA, Craig BG, Mulholland HC: Quality of life surgically palliated complex congenital heart disease. Arch Dis Childhood 1994, 70: 382–386. 10.1136/adc.70.5.382CrossRef
38.
go back to reference Latal B, Helfricht S, Fisher JE, Bauersfeld U, Landolt MA: Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: a systematic review. BMC Pediatrics 2009, 9: 6. 10.1186/1471-2431-9-6PubMedCentralPubMedCrossRef Latal B, Helfricht S, Fisher JE, Bauersfeld U, Landolt MA: Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: a systematic review. BMC Pediatrics 2009, 9: 6. 10.1186/1471-2431-9-6PubMedCentralPubMedCrossRef
39.
go back to reference Eiser C, Morse R: Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001, 10: 347–357. 10.1023/A:1012253723272PubMedCrossRef Eiser C, Morse R: Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001, 10: 347–357. 10.1023/A:1012253723272PubMedCrossRef
40.
go back to reference Manlhiot C, Knezevich S, Radojewski E, Cullen-Dean G, Williams WG, MacCrindle BW: Functional health status of adolescents after the Fontan procedure – comparison with their siblings. Can J Cardiol 2009, 25: e294-e300. 10.1016/S0828-282X(09)70139-4PubMedCentralPubMedCrossRef Manlhiot C, Knezevich S, Radojewski E, Cullen-Dean G, Williams WG, MacCrindle BW: Functional health status of adolescents after the Fontan procedure – comparison with their siblings. Can J Cardiol 2009, 25: e294-e300. 10.1016/S0828-282X(09)70139-4PubMedCentralPubMedCrossRef
Metadata
Title
Health related quality of life of children with rheumatic heart diseases: reliability of the Brazilian version of the pediatric quality of life inventory™ cardiac module scale
Authors
Anabela do Nascimento Moraes
Maria Teresa Ramos Ascensão Terreri
Maria Odete Esteves Hilário
Cláudio Arnaldo Len
Publication date
01-12-2013
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2013
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-11-198

Other articles of this Issue 1/2013

Health and Quality of Life Outcomes 1/2013 Go to the issue