Results of studying the sensitivity of Ukrainian version of Haemo-QoL Questionnaire
Background. To determine the sensitivity to changes of the Ukrainian version of questionnaire for assessing the health-related quality of life in children with hemophilia (Haemo-QoL) was the purpose or our work. Materials and methods. The quality of life was evaluated with correspondent method twice (primary and repeated questioning) by examining 48 respondents (24 children with hemophilia A and 24 their parents) using the pilot Ukrainian full version of the Haemo-QoL questionnaire. Duration of the study was 4 months. Survey model: individual and electronic questioning. Patients were divided into two groups: group I — deterioration, group II — improvement of general condition. The interviewing data were analyzed, and correlation was identified according to the questionnaire scales and the general quality of life, the difference amplitude and the Cohen’s r effect size between the obtained indicators of the health-related quality of life in the primary and repeated questioning were determined. Results. It was found that the overall indicator significantly increased in group I during the re-examination compared to the primary one, while in group II it decreased significantly that characterizes the deterioration in the health-related quality of life in group I and the improvement in group II. In group I, a significant change in the quality of life indicators was found for all scales of the questionnaire, except for the “Treatment” and “Family” scales. In group II, a significant difference was found in the scores for all the questionnaire scales. As a result, Cohen’s r for the versions of the questionnaire varied from 0.33 to 0.54, and the overall Cohen’s r was 0.50, which is sufficient to characterize the questionnaire as a tool sensitive to changes. Conclusions. The author proved that the Ukrainian version of the Haemo-QoL questionnaire is a change-sensitive tool for assessing the health-related quality of life in children with hemophilia A and their parents.
Full Text:PDF (Українська)
Markin AI, Dubey LYa, Komendant KhM, Dubey NV. Health-related quality of life in children with hemophilia А: international experience and national realities. Perinatologiya i Pediatriya. 2017;(72):125-133. (in Ukrainian).
Kean J, Monahan PO, Kroenke K, et al. Comparative responsiveness of the PROMIS Pain Interference short forms, Brief Pain Inventory, PEG, and SF-36 Bodily Pain subscale. Med Care. 2016 Apr;54(4):414-21. doi: 10.1097/MLR.0000000000000497.
von Mackensen S, Campos IG, Acquadro C, Strandberg-Larsen M. Cross-cultural adaptation and Linguistic Validation of age-group specific haemophilia patient-reported outcome (PRO) instruments for patients and parents. Haemophilia. 2013 Mar;19(2):e73-83. doi: 10.1111/hae.12054.
Epstein J, Santo RM, Guillemin F. A review of guidelines for cross-cultural adaptation of questionnaires could not bring out a consensus. J Clin Epidemiol. 2015 Apr;68(4):435-41. doi: 10.1016/j.jclinepi.2014.11.021.
Haemo-QoL Study Group. Manual (revised 2018). Available from: http://haemoqol.de/scoring/manual/
Gringeri A, Mackensen von S, Auerswald G, et al. Health status and health-related quality of life of children with haemophilia from six West European countries. Haemophilia. 2004 Mar;10 Suppl 1:26-33.
Oladapo AO, Epstein JD, Williams E, Ito D, Gringeri A, Valentino LA. Health-related quality of life assessment in haemophilia patients on prophylaxis therapy: a systematic review of results from prospective clinical trials. Haemophilia. 2015 Sep;21(5):e344-58. doi: 10.1111/hae.12759.
Tantawy AA, Mackensen von S, El-Laboudy MA, et al. Health-related quality of life in Egyptian children and adolescents with hemophilia A. Pediatr Hematol Oncol. 2011 Apr;28(3):222-9. doi: 10.3109/08880018.2010.535116.
Solans M, Pane S, Estrada MD, et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health. 2008 Jul-Aug;11(4):742-64. doi: 10.1111/j.1524-4733.2007.00293.x.
Mercan A, Sarper N, Inanir M, et al. Hemophilia-Specific Quality of Life Index (Haemo-QoL and Haem-A-QoL questionnaires) of children and adults: result of a single center from Turkey. Pediatr Hematol Oncol. 2010 Sep;27(6):449-61. doi: 10.3109/08880018.2010.489933.
Middel B, Sonderen van E. 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. Int J Integr Care. 2002;2:e15.
Novik A, Salek S, Ionova T. Guidelines patient – reported outcomes in hematology. Genoa: Litoprint; 2012. 210 p.
Poon JL, Doctor JN, Nichol MB. Longitudinal changes in health-related quality of life for chronic diseases: an example in hemophilia A. J Gen Intern Med. 2014 Aug;29 Suppl 3:S760-6. doi: 10.1007/s11606-014-2893-y.
Schroter S, Miles R, Green S, Jackson M. Psychometric validation of the Coronary Revascularisation Outcome Questionnaire (CROQv2) in the context of the NHS Coronary Revascularisation PROMs Pilot. BMJ Open. 2017 Feb 28;7(2):e015915. doi: 10.1136/bmjopen-2017-015915.
Runkel B, Mackensen von S, Hilberg T. RCT - subjective physical performance and quality of life after a 6-month programmed sports therapy (PST) in patients with haemophilia. Haemophilia. 2017 Jan;23(1):144-151. doi: 10.1111/hae.13079.
Taha MY, Hassan MK. Health-related quality of life in children and adolescents with hemophilia in Basra, Southern Iraq. J Pediatr Hematol Oncol. 2014 Apr;36(3):179-84. doi: 10.1097/MPH.0000000000000117.
Klamroth R, Pollmann H, Hermans C, et al. The relative burden of haemophilia A and the impact of target joint development on health-related quality of life: results from the ADVATE Post-Authorization Safety Surveillance (PASS) study. Haemophilia. 2011 May;17(3):412-21. doi: 10.1111/j.1365-2516.2010.02435.x.
The Survey Research Center. Guidelines for Best Practice in Cross-Cultural Surveys. 4th ed. 2016. Available from: http://ccsg.isr.umich.edu/
Rejano-Campo M, Ferrer-Peña R, Urraca-Gesto MA, et al. Transcultural adaptation and psychometric validation of a Spanish-language version of the “Pelvic Girdle Questionnaire”. Qual Quant. 2017 Feb 1;15(1):30. doi: 10.1186/s12955-017-0605-0.
Minami T, Serlin RC, Wampold BE, et al. Using clinical trials to benchmark effects produced in clinical. Quality & Quantity: International Journal of Methodology. 2008;42(4):513-525. doi: 10.1007/s11135-006-9057-z.
Pouchot J, Despujol C, Malamut G, Ecosse E, Coste J, Cellier C. Validation of a French Version of the Quality of Life “Celiac Disease Questionnaire”. PLoS One. 2014 May 2;9(5):e96346. doi: 10.1371/journal.pone.0096346.
De Boer AS, Meuffels DE, Van der Vlies CH, et al. Validation of the American Orthopaedic Foot and Ankle Society Ankle-Hindfoot Scale Dutch language version in patients with hindfoot fractures. BMJ Open. 2017 Nov 14;7(11):e018314. doi: 10.1136/bmjopen-2017-018314.
- There are currently no refbacks.
Copyright (c) 2018 CHILD`S HEALTH
This work is licensed under a Creative Commons Attribution 4.0 International License.
© Publishing House Zaslavsky, 1997-2018