Abstract
Objective
This study was devised to translate Cystic Fibrosis Questionnaire-Revised to Hindi and administer it to Indian children and adolescents diagnosed with cystic fibrosis.
Design
Cross-sectional study.
Setting
This study was carried out in cystic fibrosis patients attending Pediatric Chest Clinic of a tertiary-care hospital in Northern India from July 2012 to December 2012.
Participants
45 children (6–13 years) and their parents, and 14 adolescents. Patients with unstable health in the past two weeks were excluded.
Intervention
Cystic Fibrosis Questionnaire- Revised translated in Hindi was administered. Clinical evaluation and scoring, throat swab cultures and spirometry were also done during the same visit.
Main Outcome Measures
Health Related Quality of Life scores were the primary measures, and clinical scores, swab cultures and spirometry were secondary measures.
Results
Cronbach’s alpha ranged from 0.020–0.863.The Factor analysis indicated that most test-items correlated more with competing scales than the intended scales. Convergence between self and proxy-rating was found to be dependent on the domain. The Cystic Fibrosis Questionnaire-Revised scores correlated well with clinical scores (r=0.65,P=0.011), Pseudomonas spp culture data and pulmonary function tests. There was an inverse relation between Health Related Quality of Life scores and age at diagnosis (r=-0.339, P=0.02).
Conclusions
Hindi versions of Cystic Fibrosis Questionnaire- Revised: Child, Adolescent and Parents’ instruments will act as an important step towards data on Health Related Quality of Life of Indian patients with cystic fibrosis.
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References
Kabra SK, Kabra M, Lodha R, Shastri S. Cystic fibrosis in India. Pediatr Pulmonol. 2007;42:1087–94.
Kabra SK, Kabra M, Lodha R, Shastri S, Ghosh M, Pandey RM, et al. Clinical profile and frequency of deltaf508 mutation in Indian children with cystic fibrosis. Indian Pediatr. 2003;40:612–9.
CF Foundation Patient Registry Annual Data Report 2012. Available from: www.cff.org/UploadedFiles/research/ClinicalResearch/PatientRegistryReport/2012-CFFPatient-Registry.pdf. Accessed August 15, 2015.
Staab D, Wenninger K, Gebert N, Rupprath K, Bisson S, Trettin M, et al. Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity? Thorax. 1998;53:727–31.
Cella DF. Quality of life: the concept. J Palliat Care. 1992;8:8–13.
Gee L, Abbott J, Conway SP, Etherington C, Webb AK. Validation of the SF-36 for the assessment of quality of life in adolescents and adults with cystic fibrosis. J Cyst Fibros. 2002;1:137–45.
Gee L, Abbott J, Conway SP, Etherington C, Webb AK. Development of a disease specific health related quality of life measure for adults and adolescents with cystic fibrosis. Thorax. 2000;55:946–54.
Abbott J, Hart A. Measuring and reporting quality of life outcomes in clinical trials in cystic fibrosis: a critical review. Health Quality Life Outcomes. 2005;3:19–22.
Center for Drug Evaluation and Research Guidance for industry. Patient-reported outcome measures: Use in medical product development to support labeling claims. US Department of Health and Human Services, Food and Drug Administration. December 2009. Available from: www.fda.gov/downloads/Drugs/Guidances/UCM193282.pdf. Accessed August 15, 2014.
Goss CH, Quittner AL. Patient-reported outcomes in cystic fibrosis. Proceedings of the American Thoracic Society. 2007;4:378–86.
Quittner AL. Measurement of quality of life in cystic fibrosis. Curr Opin Pulm Med. 1998;4:326–31.
Henry B, Aussage P, Grosskopf C, Goehrs JM. Development of the Cystic Fibrosis Questionnaire (CFQ) for assessing quality of life in pediatric and adult patients. Qual Life Res. 2003;12:63–76.
Quittner AL, Sweeny S, Watrous M, Munzenberger p, Bearss K, Gibson Nitza A, et al. Translation and linguistic validation of a disease-specific quality of life measure for cystic fibrosis. J Pediatr Psychol. 2000;25:403–14.
Modi AC, Quittner AL. Validation of a Disease-specific measure of health-related quality of life for children with cystic fibrosis. J Pediatr Psychol. 2003;28:535–46.
Quittner AL, Buu A, Messer MA, Modi AC, Watrous M. Development and validation of The Cystic Fibrosis Questionnaire in the United States: a health-related qualityof-life measure for cystic fibrosis. Chest. 2005;128:2347–54.
Klijn PH, van Stel HF, Quittner AL, van der Net J, Doeleman W, van der Schans CP, et al. Validation of the Dutch cystic fibrosis questionnaire (CFQ) in adolescents and adults. J Cyst Fibros. 2004;3:29–36.
Schmidt A, Wenninger K, Niemann N, Wahn U, Staab D: Health-related quality of life in children with cystic fibrosis: validation of the German CFQ-R. Health Quality Life Outcomes. 2009;7:97–106.
Quittner AL, Sawicki GS, McMullen A, Rasouliyan L, Pasta DJ, Yegin A, et al. Psychometric evaluation of the Cystic Fibrosis Questionnaire-Revised in a national sample. Qual Life Res. 2012;21:1279–90.
Bodnar R, Kadar L, Holics K, Ujhelyi R, Kovacs L, Bolbas K, et al. Factros influencing quality of life and disease severity in Hungarian children and young adults wth cystic fibrosis. Ital J Pediatr. 2014;40:50.
Groeneveld IF, Sosa ES, Pérez M, Fiuza-Luces C, Gonzalez-Saiz L, Gallardo C, et al. Health-related quality of life of Spanish children with cystic fibrosis. Qual Life Res. 2012;21:1837–45.
Yuksel H, Yilmaz O, Dogru D, Karadag B, Unal F, Quittner AL. Reliability and validity of the Cystic Fibrosis Questionnaire-Revised for children and parents in Turkey: cross-sectional study. Qual Life Res. 2013;22:409–14.
Sharma VK, Raj D, Xess I, Lodha R, Kabra SK. Prevalence and risk factors for allergic bronchopulmonary aspergillosis in Indian children with cystic fibrosis. Indian Pediatr. 2014;51:295–7.
Peterson RA, Kim Y. On the relationship between coefficient alpha and composite reliability. J Appl Psychol. 2013;98:194–8.
Fayers PM, Hand DJ. Factor analysis, causal indicators and quality of life. Qual Life Res. 1997;6:139–50.
Juniper EF, Guyatt GH, Streiner DL, King DR. Clinical impact versus factor analysis for quality of life questionnaire construction. J Clin Epidemiol. 1997;50:233–8.
Havermans T, Vreys M, Proesmans M, De Boeck C. Assessment of agreement between parents and children on health-related quality of life in children with cystic fibrosis. Child Care Health Dev. 2006;32:1–7.
Janse AJ, Sinnema G, Uiterwaal CS, Kimpen JL, Gemke RJ. Quality of life in chronic illness: children, parents and paediatricians have different, but stable perceptions. Acta Paediatr. 2008;97:1118–24.
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Kir, D., Gupta, S., Jolly, G. et al. Health related quality of life in Indian children with cystic fibrosis. Indian Pediatr 52, 403–408 (2015). https://doi.org/10.1007/s13312-015-0645-7
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DOI: https://doi.org/10.1007/s13312-015-0645-7