TEST-RETEST RELIABILITY OF UKRAINIAN VERSION OF THE HAEMO-QOL QUESTIONNAIRE
Abstract
Background: Today psychometric characteristics of Ukrainian version of the questionnaire Haemo-QoL remain researched insufficiently. This publication describes the procedure and results of the test-retest reliability of this questionnaire in children with hemophilia A.
Objectives: Study the test-retest reliability of the Ukrainian version of the Haemo-QoL questionnaire for assessing the health-related quality of life (HRQoL) in children with hemophilia A, and determine the possibility of its use in practical and theoretical medicine in terms of time reliability.
Methods. The quality of life assessment (QoLA) was performed using the correspondence method, by interviewing 32 children with hemophilia A (self-report) and 32 parents of the children (proxy-report). The questioning was conducted twice at intervals of 4–6 weeks (primary test and re-test). The Haemo-QoL questionnaire version of age group I (4–7 years old), II (8–12 years old) or age group III (13–16 years) was used to measure the quality of life in children with hemophilia; and three versions were used for parents of children of corresponding age groups. These interviews were analyzed, the correlation between the data of primary test and re-test was determined using Spearman's rho, Pearson correlation coefficients, Wilcoxon’s W criterion, Cohen's d effect size was determined for separate comparisons.
Results: HRQoL indices are not statistically different between tests on all scales (p>0.05), except for the “Family” and “Others” scales (p<0.05). Total HRQoL is statistically different (p=0.0013), however, with a median difference of 0.25 only and an average absolute difference variability of 1.67±1.51 (5.42±2.83 %). Total HRQoL in parent versions did not change statistically, unlike the children’s versions, but the difference between the tests was only 1.32 and Cohen’s d ES - 0.08. For versions Ip, IIp, IIIc/p there was no statistical difference, the versions Ic and II statistically differed (p=0.038; t=–2.39 and p=0.0022; t=–3.98, respectively) with a mean difference of 2.0 and 1.6, respectively.
Conclusion: The Ukrainian version of the Haemo-QoL questionnaire has sufficient test-retest reliability for quantitative dynamic reflection HRQoL in patients with hemophilia A.
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References
Van den Berg, H. M., Feldman, B. M., Fischer, K., Blanchette, V., Poonnoose, P., Srivastava, A. (2015). Assessments of outcome in haemophilia – what is the added value of QoL tools? Haemophilia, 21 (4), 430–435. doi: 10.1111/hae.12731
Porter, I., Gonçalves-Bradley, D., Ricci-Cabello, I., Gibbons, C., Gangannagaripalli, J., Fitzpatrick, R. et. al. (2016). Framework and guidance for implementing patient-reported outcomes in clinical practice: evidence, challenges and opportunities. Journal of Comparative Effectiveness Research, 5 (5), 507–519. doi: 10.2217/cer-2015-0014
Novik, A., Salek, S., Ionova, T. (2012). Guidelines patient – reported outcomes in hematology. Genoa: Litoprint.
de Moerloose, P., Fischer, K., Lambert, T., Windyga, J., Batorova, A., Lavigne-Lissalde, G. et. al. (2011). Recommendations for assessment, monitoring and follow-up of patients with haemophilia. Haemophilia, 18 (3), 319–325. doi: 10.1111/j.1365-2516.2011.02671.x
Megari, K. (2013). Quality of life in chronic disease patients. Health Psychology Research, 1 (3), 141–148. doi: 10.4081/hpr.2013.e27
Snyder, C. F., Aaronson, N. K., Choucair, A. K., Elliott, T. E., Greenhalgh, J., Halyard, M. Y. et. al. (2011). Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Quality of Life Research, 21 (8), 1305–1314. doi: 10.1007/s11136-011-0054-x
Gringeri, A., von Mackensen, S., Auerswald, G., Bullinger, M., Garrido, R. P. et. al. (2004). Health status and health-related quality of life of children with haemophilia from six West European countries. Haemophilia, 10 (1), 26–33. doi: 10.1111/j.1355-0691.2004.00876.x
Oladapo, A. O., Epstein, J. D., Williams, E., Ito, D., Gringeri, A., Valentino, L. A. (2015). Health-related quality of life assessment in haemophilia patients on prophylaxis therapy: a systematic review of results from prospective clinical trials. Haemophilia, 21 (5), 344–358. doi: 10.1111/hae.12759
Bullinger, M., Von Mackensen, S., Fischer, K., Khair, K., Petersen, C., Ravens-Sieberer, U. et. al. (2002). Pilot testing of the 'Haemo-QoL' quality of life questionnaire for haemophiliac children in six European countries. Haemophilia, 8 (2), 47–54. doi: 10.1046/j.1351-8216.2001.114.doc.x
Limperg, P. F., Terwee, C. B., Young, N. L., Price, V. E., Gouw, S. C., Peters, M. et. al. (2017). Health-related quality of life questionnaires in individuals with haemophilia: a systematic review of their measurement properties. Haemophilia, 23 (4), 497–510. doi: 10.1111/hae.13197
Epstein, J., Santo, R. M., Guillemin, F. (2015). A review of guidelines for cross-cultural adaptation of questionnaires could not bring out a consensus. Journal of Clinical Epidemiology, 68 (4), 435–441. doi: 10.1016/j.jclinepi.2014.11.021
Von Mackensen, S., Campos, I. G., Acquadro, C., Strandberg-Larsen, M. (2012). Cross-cultural adaptation and linguistic validation of age-group-specific haemophilia patient-reported outcome (PRO) instruments for patients and parents. Haemophilia, 19 (2), 73–83. doi: 10.1111/hae.12054
Middel, B., Van Sonderen, E. (2002). Statistical significant change versus relevant or important change in (quasi) experimental design: some conceptual and methodological problems in estimating magnitude of intervention-related change in health services research. International Journal of Integrated Care, 2 (4). doi: 10.5334/ijic.65
Bolarinwa, O. (2015). Principles and methods of validity and reliability testing of questionnaires used in social and health science researches. Nigerian Postgraduate Medical Journal, 22 (4), 195. doi: 10.4103/1117-1936.173959
Pedisic, Z., Bennie, J. A., Timperio, A. F., Crawford, D. A., Dunstan, D. W., Bauman, A. E., Salmon, J. (2014). Workplace Sitting Breaks Questionnaire (SITBRQ): an assessment of concurrent validity and test-retest reliability. BMC Public Health, 14 (1). doi: 10.1186/1471-2458-14-1249
Solans, M., Pane, S., Estrada, M.-D., Serra-Sutton, V., Berra, S., Herdman, M. et. al. (2008). Health-Related Quality of Life Measurement in Children and Adolescents: A Systematic Review of Generic and Disease-Specific Instruments. Value in Health, 11 (4), 742–764. doi: 10.1111/j.1524-4733.2007.00293.x
Von Mackensen, S., Bullinger, M. (2004). Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL). Haemophilia, 10 (1), 17–25. doi: 10.1111/j.1355-0691.2004.00875.x
Mercan, A., Sarper, N., Inanir, M., Mercan, H. I., Zengin, E., Kilic, S. C., Gokalp, A. S. (2010). Hemophilia-Specific quality of life index (Haemo-QoL AND Haem-A-QoL questionnaires) of children and adults: Result of a Single Center from Turkey. Pediatric Hematology and Oncology, 27 (6), 449–461. doi: 10.3109/08880018.2010.489933
Haemo-QoL Study Group. Manual. Available at: http://haemoqol.de/scoring/manual/
Coolican, H. (2014). Research methods and statistics in psychology. New York: Psychology Press, 773.
Fritz, C. O., Morris, P. E., Richler, J. J. (2012). Effect size estimates: Current use, calculations, and interpretation. Journal of Experimental Psychology: General, 141 (1), 2–18. doi: 10.1037/a0024338
Pollak, E., Muhlan, H., von Mackensen, S., Bullinger, M. (2006). The Haemo-QoL Index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophilia. Haemophilia, 12 (4), 384–392. doi: 10.1111/j.1365-2516.2006.01292.x
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