- Ukrainian version of the Haemo-QoL question- naire: linguistic and socio-cultural adaptation
Ukrainian version of the Haemo-QoL question- naire: linguistic and socio-cultural adaptation
PEDIATRIYA.2018.1(89):84-89; doi 10.15574/SP.2018.89.84
Markin A. I., Dubey L. Ya., Khmilyarchuk L. I.
Danylo Halytsky Lviv National Medical University, Ukraine
Lviv University of Trade and Economics, Ukraine
Objective: linguistic and socio1cultural adaptation of the Haemo-QoL questionnaire to the national conditions.
Material and methods. The ethnolinguistic adaptation of full version of the Haemo-QoL questionnaire for evaluating the health1related quality of life in children of three age groups with haemophilia and children's parents of the corresponding age groups is performed: 4–7 years old, 8–12 years old, 13–16 years old. The direct translation and reverse translation of the questionnaire, the expert evaluation of the quality of socio1cultural adaptation and translation were accomplished, a proof-of-concept testing of questionnaire was carried out by interviewing 29 children suffering from haemophilia A and their 29 parents. The interview data was analysed and the final version of the questionnaire was created.
Results. The process of linguistic and socio1cultural adaptation of the Ukrainian version of the Haemo-QoL questionnaire, intended to assess the health-related quality of life in children with haemophilia, is described. It was established that the newly created Ukrainian version of the Haemo-QoL questionnaire is conceptually, ideologically, experimentally and semantically equivalent to the original version.
Conclusions. The newly created Ukrainian version of the Haemo-QoL questionnaire may be considered linguistically and culturally adapted to the national conditions; however, the recognizing of its validity requires the psychometric characteristics evaluation in an individual study.
Key words: haemophilia, children, adaptation of questionnaire, quality of life.
1. Dubei L.Ia., Donska S.B., Vilchevska K.V. ta in. (2012). Yevropeiski pryntsypy orhanizatsii medyko-sotsialnoi dopomohy ditiam, khvorym na hemofiliiu. Ukr. zhurn. hematolohii ta transfuziolohii. 3: 25—34.
2. Kryvenko V.I., Hrinenko T.Iu., Kachan I.S. (2011). Yakist zhyttia yak efektyvnyi obiektyvnyi kryterii diahnostyky ta likuvannia u suchasnii medytsyni. Zaporozhskyi medytsynskyi zhurnal. 13, 6: 91—96.
3. Novik A.A., Ionova T.I. (2013). Issledovanie kachestva zhizni v pediatrii. 2-e izd. Moskva: RAEN.
4. OrYol V.E., Senin I.G. (2008). Opyit adaptatsii zarubezhnogo oprosnika: organizatsionnyiy i soderzhatelnyiy aspekt. Vestnik YuUrGU. 33: 71—77
5. Acquadro C, Conway K, Hareendran A. et al. (2008). Literature review of methods to translate health-related quality of life questionnaires for use in multinational clinical trials. Value Health. 11(3): 509—521. https://doi.org/10.1111/j.1524-4733.2007.00292.x; PMid:18179659
6. Beaton DE, Bombardier C, Guillemin F, Ferraz MB. (2000). Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measures. Spine J. 25(24): 3186—3191. https://doi.org/10.1097/00007632-200012150-00014
7. Bullinger M, von Mackensen S, Fischer K. 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. https://doi.org/10.1046/j.1351-8216.2001.114.doc.x; PMid:11966854
8. Deshbhratar DP. (2016). Comparison of Quality of Life in Adults and Children with Haemophilia. Imperial Journal of Interdisciplinary Research. 2(7): 733—735.
9. Giangrande P, Calizzani G, Menichini I et al. (2014). The European standards of Haemophilia Centres. Blood Transfus. 12(3): 525—530. https://doi.org/10.1111/hae.12440; PMid:24731129
10. Graves KD, Jensen RE, Canar J et al. (2012). Through the lens of culture: quality of life among Latina breast cancer survivors. Breast Cancer Research and Treatment. 136(2): 603—613. https://doi.org/10.1007/s10549-012-2291-2; PMid:23085764 PMCid:PMC3547364
11. Gringeri A, von Mackensen S, Auerswald G. et al. (2004). Health status and healthrelated quality of life of children with haemophilia from six West European countries. Haemophilia. 10(1): 26—33. https://doi.org/10.1111/j.1355-0691.2004.00876.x; PMid:14987246
12. Guyatt GH. (1993). The philosophy of health-related quality of life translation. Qual Life Res. 2(6): 461—465. https://doi.org/10.1007/BF00422220; PMid:8161980
13. Krabbe PF. (2008). Thurst one scaling as a measurement method to quantify subjective health outcomes. Med Care. 46(4): 357—365. https://doi.org/10.1097/MLR.0b013e31815ceca9; PMid:18362814
14. Lee C, Berntorp E, Hoots K (Eds.). (2014). Textbook of Haemophilia. 3rd ed. Oxford: Wiley-Blackwell. https://doi.org/10.1002/9781118398258
15. Mercan A, Sarper N, Inanir M. et.al. (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. J Pediatr Hematol Oncol. 27(6): 449—461. https://doi.org/10.3109/08880018.2010.489933; PMid:20615067
16. Novik A, Salek S, Ionova T. (2012). Guidelines patient — reported outcomes in hematology. Genoa: Litoprint.
17. Oladapo AO, Epstein JD, Williams E. et al. (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. https://doi.org/10.1111/hae.12759; PMid:26390060
18. Oliveira IS, Costa L da CM, Fagundes FRC. et al. (2015). Evaluation of cross-cultural adaptation and measurement properties of breast cancer-specific quality-of-life questionnaires: a systematic review. Quality of Life Research. 24(5): 1179—1195. https://doi.org/10.1007/s11136-014-0840-3; PMid:25391488
19. Pollak E, Muhlan H, von Mackensen S, Bullinger M; Haemo-QoL group. (2006). The Haemo-QoL Index: developing a short measure for health-related quality of life assessment in children and adolescents with haemophilia. 12(4): 384–392.
20. Srivastava A, Brewer AK, Mauser-Bunschoten EP. et al. (2013) Guidelines for the management of hemophilia. Haemophilia, 19(1): 1–47. https://doi.org/10.1111/j.1365-2516.2012.02909.x; PMid:22776238
21. Tantawy AA, von Mackensen S, El-Laboudy MA. et al. (2011). Health-related quality of life in Egyptian children and adolescents with hemophilia A. J Pediatr Hematol Oncol. 28(3): 222–229. https://doi.org/10.3109/08880018.2010.535116; PMid:21271776
22. Von Mackensen S, Campos G, Acquadro C, Strandberg-Larsen M. (2013). 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. https://doi.org/10.1111/hae.12054; PMid:23167873
23. Ware JE Jr, Keller SD, Gandek B. et al. (1995). Evaluating translations of health status questionnaires. International Journal of Technology Assesment in Health care. 11(3): 525—551.
24. Williams VK, Antoniou G, Jackson A, Atkins A. (2016). Parents' perception of quality of life in their sons with haemophilia. J Paediatr Child Health. 52(12): 1095—1098. https://doi.org/10.1111/jpc.13340; PMid:27566422