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Published in: Health and Quality of Life Outcomes 1/2008

Open Access 01-12-2008 | Research

The Pediatric Quality of Life Inventory™ (PedsQL™) family impact module: reliability and validity of the Brazilian version

Authors: Ana C Scarpelli, Saul M Paiva, Isabela A Pordeus, James W Varni, Cláudia M Viegas, Paul J Allison

Published in: Health and Quality of Life Outcomes | Issue 1/2008

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Abstract

Background

Pediatric health-related quality of life (HRQOL) has emerged as an important health outcome in clinical trials and healthcare research, for which HRQOL assessment instruments have played an important role. However, these instruments are not available in all countries or all languages. The Pediatric Quality of Life Inventory™ (PedsQL™) Family Impact Module is a multidimensional instrument developed to assess the impact of chronic medical conditions on the HRQOL of parents and family functioning. The objective of the present study was to evaluate the psychometric properties of the PedsQL™ Family Impact Module cross-culturally adapted for use in Brazil.

Methods

The PedsQL™ Family Impact Module was administered to 95 parents/guardians of children with cancer in active therapy from 2 to 18 years of age of both genders. Subjects were recruited by means of convenience samples from the Pediatric Hematology/Oncology Centers at two public hospitals. The 'in-patient' sample was defined as individuals who were hospitalized for the administration of chemotherapy. The 'out-patient' sample was defined as individuals who were receiving chemotherapy and were not hospitalized.

Results

Test-retest reliability exhibited correlation values ranging from 0.81 to 0.96 for all subscales. Internal consistency reliability was demonstrated for the PedsQL™ Family Impact Module: Total Scale Score (α = 0.89), Parent Health-Related Quality of Life Summary Score (α = 0.83) and Family Summary Score (α = 0.73). The Total Impact Score for the in-patient and out-patient samples was 67.60 and 56.43, respectively (p < 0.01). The construct validity demonstrated that the PedsQL™ Family Impact Module proved capable of distinguishing between families whose children/adolescents were hospitalized and families of children/adolescents who are being taken care of at home.

Conclusion

The Brazilian version of the PedsQL™ Family Impact Module was considered reliable and valid for assessing the impact of a chronic pediatric health condition on the HRQOL of parents and family functioning. The instrument should be field tested on other chronic pediatric illnesses.
Literature
1.
go back to reference Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A: The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer 1998, 82(6):1184–1196. 10.1002/(SICI)1097-0142(19980315)82:6<1184::AID-CNCR25>3.0.CO;2-1CrossRefPubMed Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A: The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer 1998, 82(6):1184–1196. 10.1002/(SICI)1097-0142(19980315)82:6<1184::AID-CNCR25>3.0.CO;2-1CrossRefPubMed
2.
go back to reference Mulhern RK, Palmer SL: Neurocognitive late effects in pediatric cancer. Curr Probl Cancer 2003, 27(4):177–197. 10.1016/S0147-0272(03)00026-6CrossRefPubMed Mulhern RK, Palmer SL: Neurocognitive late effects in pediatric cancer. Curr Probl Cancer 2003, 27(4):177–197. 10.1016/S0147-0272(03)00026-6CrossRefPubMed
3.
go back to reference Goldbeck L: The impact of newly diagnosed chronic paediatric conditions on parental quality of life. Qual Life Res 2006, 15(7):1121–1131. 10.1007/s11136-006-0068-yCrossRefPubMed Goldbeck L: The impact of newly diagnosed chronic paediatric conditions on parental quality of life. Qual Life Res 2006, 15(7):1121–1131. 10.1007/s11136-006-0068-yCrossRefPubMed
4.
go back to reference Wallander JL, Varni JW: Effects of pediatric chronic physical disorders on child and family adjustment. Journal of child psychology and psychiatry, and allied disciplines 1998, 39(1):29–46. 10.1017/S0021963097001741CrossRefPubMed Wallander JL, Varni JW: Effects of pediatric chronic physical disorders on child and family adjustment. Journal of child psychology and psychiatry, and allied disciplines 1998, 39(1):29–46. 10.1017/S0021963097001741CrossRefPubMed
5.
go back to reference Eiser C: Psychological effects of chronic disease. Journal of child psychology and psychiatry, and allied disciplines 1990, 31(1):85–98. 10.1111/j.1469-7610.1990.tb02274.xCrossRefPubMed Eiser C: Psychological effects of chronic disease. Journal of child psychology and psychiatry, and allied disciplines 1990, 31(1):85–98. 10.1111/j.1469-7610.1990.tb02274.xCrossRefPubMed
7.
go back to reference Varni JW, Seid M, Rode CA: The PedsQL: measurement model for the pediatric quality of life inventory. Medical care 1999, 37(2):126–139. 10.1097/00005650-199902000-00003CrossRefPubMed Varni JW, Seid M, Rode CA: The PedsQL: measurement model for the pediatric quality of life inventory. Medical care 1999, 37(2):126–139. 10.1097/00005650-199902000-00003CrossRefPubMed
8.
go back to reference 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. 10.1186/1477-7525-2-55PubMedCentralCrossRefPubMed 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. 10.1186/1477-7525-2-55PubMedCentralCrossRefPubMed
9.
go back to reference Herdman M, Fox-Rushby J, Badia X: 'Equivalence' and the translation and adaptation of health-related quality of life questionnaires. Qual Life Res 1997, 6(3):237–247. 10.1023/A:1026410721664CrossRefPubMed Herdman M, Fox-Rushby J, Badia X: 'Equivalence' and the translation and adaptation of health-related quality of life questionnaires. Qual Life Res 1997, 6(3):237–247. 10.1023/A:1026410721664CrossRefPubMed
10.
go back to reference Herdman M, Fox-Rushby J, Badia X: A model of equivalence in the cultural adaptation of HRQoL instruments: the universalist approach. Qual Life Res 1998, 7(4):323–335. 10.1023/A:1008846618880CrossRefPubMed Herdman M, Fox-Rushby J, Badia X: A model of equivalence in the cultural adaptation of HRQoL instruments: the universalist approach. Qual Life Res 1998, 7(4):323–335. 10.1023/A:1008846618880CrossRefPubMed
11.
go back to reference Sperber AD: Translation and validation of study instruments for cross-cultural research. Gastroenterology 2004, 126(1 Suppl 1):S124–128. 10.1053/j.gastro.2003.10.016CrossRefPubMed Sperber AD: Translation and validation of study instruments for cross-cultural research. Gastroenterology 2004, 126(1 Suppl 1):S124–128. 10.1053/j.gastro.2003.10.016CrossRefPubMed
12.
go back to reference Streiner DL, Norman GR: Health measurement scales: a practical guide to their development and use. 3rd edition. Oxford: Oxfor University Press; 2003. Streiner DL, Norman GR: Health measurement scales: a practical guide to their development and use. 3rd edition. Oxford: Oxfor University Press; 2003.
13.
go back to reference Steiner M, Streiner DL: Validation of a revised visual analog scale for premenstrual mood symptoms: results from prospective and retrospective trials. Can J Psychiatry 2005, 50(6):327–332.PubMed Steiner M, Streiner DL: Validation of a revised visual analog scale for premenstrual mood symptoms: results from prospective and retrospective trials. Can J Psychiatry 2005, 50(6):327–332.PubMed
14.
go back to reference Bartko JJ: The intraclass correlation coefficient as a measure of reliability. Psychological reports 1966, 19(1):3–11.CrossRefPubMed Bartko JJ: The intraclass correlation coefficient as a measure of reliability. Psychological reports 1966, 19(1):3–11.CrossRefPubMed
15.
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 2000, 9(9):1041–1052. 10.1023/A:1016647407161CrossRefPubMed Wilson KA, Dowling AJ, Abdolell M, Tannock IF: Perception of quality of life by patients, partners and treating physicians. Qual Life Res 2000, 9(9):1041–1052. 10.1023/A:1016647407161CrossRefPubMed
16.
go back to reference Landis JR, Koch GG: The measurement of observer agreement for categorical data. Biometrics 1977, 33(1):159–174. 10.2307/2529310CrossRefPubMed Landis JR, Koch GG: The measurement of observer agreement for categorical data. Biometrics 1977, 33(1):159–174. 10.2307/2529310CrossRefPubMed
17.
go back to reference Cronbach LJ: Coefficient alpha and the internal structure of tests. Psychometrika 1951, 16: 297–334. 10.1007/BF02310555CrossRef Cronbach LJ: Coefficient alpha and the internal structure of tests. Psychometrika 1951, 16: 297–334. 10.1007/BF02310555CrossRef
18.
go back to reference Nunnally JC, Bernstein IR: Psychometric theory. 3rd edition. New York: McGraw-Hill; 1994. Nunnally JC, Bernstein IR: Psychometric theory. 3rd edition. New York: McGraw-Hill; 1994.
19.
go back to reference Ortiz MC, de Lima RA: Experiences of families with children and adolescents after completing a cancer treatment: support for the nursing care. Revista latino-americana de enfermagem 2007, 15(3):411–417. 10.1590/S0104-11692007000300008CrossRefPubMed Ortiz MC, de Lima RA: Experiences of families with children and adolescents after completing a cancer treatment: support for the nursing care. Revista latino-americana de enfermagem 2007, 15(3):411–417. 10.1590/S0104-11692007000300008CrossRefPubMed
20.
go back to reference Cohen J: Statistical power analysis for the behavioral sciences. 2nd edition. Hillsdale: Lawrence Erlbaum; 1988. Cohen J: Statistical power analysis for the behavioral sciences. 2nd edition. Hillsdale: Lawrence Erlbaum; 1988.
21.
go back to reference Houtzager BA, Grootenhuis MA, Hoekstra-Weebers JE, Last BF: One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer. Child: care, health and development 2005, 31(1):75–87. Houtzager BA, Grootenhuis MA, Hoekstra-Weebers JE, Last BF: One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer. Child: care, health and development 2005, 31(1):75–87.
22.
go back to reference McCaffrey CN: Major stressors and their effects on the well-being of children with cancer. J Pediatr Nurs 2006, 21(1):59–66. 10.1016/j.pedn.2005.07.003CrossRefPubMed McCaffrey CN: Major stressors and their effects on the well-being of children with cancer. J Pediatr Nurs 2006, 21(1):59–66. 10.1016/j.pedn.2005.07.003CrossRefPubMed
23.
go back to reference Fleck MP, Louzada S, Xavier M, Chachamovich E, Vieira G, Santos L, Pinzon V: [Application of the Portuguese version of the instrument for the assessment of quality of life of the World Health Organization (WHOQOL-100)]. Rev Saude Publica 1999, 33(2):198–205.CrossRefPubMed Fleck MP, Louzada S, Xavier M, Chachamovich E, Vieira G, Santos L, Pinzon V: [Application of the Portuguese version of the instrument for the assessment of quality of life of the World Health Organization (WHOQOL-100)]. Rev Saude Publica 1999, 33(2):198–205.CrossRefPubMed
24.
go back to reference Guyatt GH, Feeny DH, Patrick DL: Measuring health-related quality of life. Ann Intern Med 1993, 118(8):622–629.CrossRefPubMed Guyatt GH, Feeny DH, Patrick DL: Measuring health-related quality of life. Ann Intern Med 1993, 118(8):622–629.CrossRefPubMed
25.
go back to reference Scarpelli AC, Paiva SM, Pordeus IA, Ramos-Jorge ML, Varni JW, Allison PJ: Measurement properties of the Brazilian version of the Pediatric Quality of Life Inventory (PedsQL) cancer module scale. Health and quality of life outcomes 2008, 6(1):7. 10.1186/1477-7525-6-7PubMedCentralCrossRefPubMed Scarpelli AC, Paiva SM, Pordeus IA, Ramos-Jorge ML, Varni JW, Allison PJ: Measurement properties of the Brazilian version of the Pediatric Quality of Life Inventory (PedsQL) cancer module scale. Health and quality of life outcomes 2008, 6(1):7. 10.1186/1477-7525-6-7PubMedCentralCrossRefPubMed
26.
go back to reference Allison PJ: Health-related quality of life comparisons in French and English-speaking populations. Community Dent Health 2001, 18(4):214–218.PubMed Allison PJ: Health-related quality of life comparisons in French and English-speaking populations. Community Dent Health 2001, 18(4):214–218.PubMed
28.
go back to reference Jenkinson C: Evaluating the efficacy of medical treatment: possibilities and limitations. Social science & medicine (1982) 1995, 41(10):1395–1401.CrossRef Jenkinson C: Evaluating the efficacy of medical treatment: possibilities and limitations. Social science & medicine (1982) 1995, 41(10):1395–1401.CrossRef
29.
go back to reference Shrout PE: Reliability. In Textbook in psychiatry epidemiology. Edited by: Zahner TTA. New York: Wiley-Liss; 1995:213–227. Shrout PE: Reliability. In Textbook in psychiatry epidemiology. Edited by: Zahner TTA. New York: Wiley-Liss; 1995:213–227.
30.
go back to reference 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(7):2090–2106. 10.1002/cncr.10428CrossRefPubMed 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(7):2090–2106. 10.1002/cncr.10428CrossRefPubMed
31.
go back to reference Straus MA, Gelles JR: Physical violence in American families: risk factors and adaptations to violence in 8,145 families. New Brunswick: Transaction Publishers; 1995. Straus MA, Gelles JR: Physical violence in American families: risk factors and adaptations to violence in 8,145 families. New Brunswick: Transaction Publishers; 1995.
32.
go back to reference Li TC, Lin CC, Liu CS, Li CI, Lee YD: Validation of the Chinese version of the diabetes impact measurement scales amongst people suffering from diabetes. Qual Life Res 2006, 15(10):1613–1619. 10.1007/s11136-006-0024-xCrossRefPubMed Li TC, Lin CC, Liu CS, Li CI, Lee YD: Validation of the Chinese version of the diabetes impact measurement scales amongst people suffering from diabetes. Qual Life Res 2006, 15(10):1613–1619. 10.1007/s11136-006-0024-xCrossRefPubMed
33.
go back to reference Brabo EP, Paschoal ME, Biasoli I, Nogueira FE, Gomes MC, Gomes IP, Martins LC, Spector N: Brazilian version of the QLQ-LC13 lung cancer module of the European Organization for Research and Treatment of Cancer: preliminary reliability and validity report. Qual Life Res 2006, 15(9):1519–1524. 10.1007/s11136-006-0009-9CrossRefPubMed Brabo EP, Paschoal ME, Biasoli I, Nogueira FE, Gomes MC, Gomes IP, Martins LC, Spector N: Brazilian version of the QLQ-LC13 lung cancer module of the European Organization for Research and Treatment of Cancer: preliminary reliability and validity report. Qual Life Res 2006, 15(9):1519–1524. 10.1007/s11136-006-0009-9CrossRefPubMed
34.
go back to reference Upton P, Eiser C, Cheung I, Hutchings HA, Jenney M, Maddocks A, Russell IT, Williams JG: Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health and quality of life outcomes 2005, 3: 22. 10.1186/1477-7525-3-22PubMedCentralCrossRefPubMed Upton P, Eiser C, Cheung I, Hutchings HA, Jenney M, Maddocks A, Russell IT, Williams JG: Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health and quality of life outcomes 2005, 3: 22. 10.1186/1477-7525-3-22PubMedCentralCrossRefPubMed
35.
go back to reference Patenaude AF, Kupst MJ: Psychosocial functioning in pediatric cancer. Journal of pediatric psychology 2005, 30(1):9–27. 10.1093/jpepsy/jsi012CrossRefPubMed Patenaude AF, Kupst MJ: Psychosocial functioning in pediatric cancer. Journal of pediatric psychology 2005, 30(1):9–27. 10.1093/jpepsy/jsi012CrossRefPubMed
36.
go back to reference Weinberger M, Oddone EZ, Samsa GP, Landsman PB: Are health-related quality-of-life measures affected by the mode of administration? Journal of clinical epidemiology 1996, 49(2):135–140. 10.1016/0895-4356(95)00556-0CrossRefPubMed Weinberger M, Oddone EZ, Samsa GP, Landsman PB: Are health-related quality-of-life measures affected by the mode of administration? Journal of clinical epidemiology 1996, 49(2):135–140. 10.1016/0895-4356(95)00556-0CrossRefPubMed
37.
go back to reference Goursand D, Paiva SM, Zarzar PM, Ramos-Jorge ML, Cornacchia GM, Pordeus IA, Allison PJ: Cross-cultural adaptation of the Child Perceptions Questionnaire 11–14 (CPQ11–14) for the Brazilian Portuguese language. Health and quality of life outcomes 2008, 6: 2. 10.1186/1477-7525-6-2PubMedCentralCrossRefPubMed Goursand D, Paiva SM, Zarzar PM, Ramos-Jorge ML, Cornacchia GM, Pordeus IA, Allison PJ: Cross-cultural adaptation of the Child Perceptions Questionnaire 11–14 (CPQ11–14) for the Brazilian Portuguese language. Health and quality of life outcomes 2008, 6: 2. 10.1186/1477-7525-6-2PubMedCentralCrossRefPubMed
Metadata
Title
The Pediatric Quality of Life Inventory™ (PedsQL™) family impact module: reliability and validity of the Brazilian version
Authors
Ana C Scarpelli
Saul M Paiva
Isabela A Pordeus
James W Varni
Cláudia M Viegas
Paul J Allison
Publication date
01-12-2008
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2008
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-6-35

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