AGE PECULIARITIES OF PSYCHOSOCIAL DETERMINANTS OF THE COURSE OF SEVERE FORMS OF HEMOPHILIA A IN CHILDREN

Markin A., Dubey L.

HYGIENE AND ECOLOGY

Scentific article

Hemophilia, as a chronic disease that requires life-long treatment, undoubtedly affects all aspects of the patient’s life, and belongs to diseases with a partially specific lifestyle. The assessment of the health-related quality of life (QoL) is an important element in the management and personification of the treatment of patients with hemophilia. QoL is an ethno-dependent indicator and the age-related features of QoL in children with hemophilia differ in different countries, thus necessitating such studies in Ukraine. Research objective: investigate and analyze the age-related features of the influence of severe forms of hemophilia A on QoL and certain determinants of psychosocial functioning (PF) in children. Object and methods: QoL was assessed by the method of a sociological survey of 105 children of three age groups (I - 4-7 years, II - 8-12 years, III - 13-16 years) with severe form of hemophilia A, using a validated Ukrainian version of the questionnaire Haemo-QoL. The statistical and analytical processing of the data obtained was carried out, the age-related dynamics of the respective indicators was determined. Findings: it was found that the general QoL deteriorates with the age of the best in children I age group with an indicator of 45.74±11.75 to 49.23±13.38 in group II and the worst in group III of patients (51.57±13.60). However, this difference was not statistically significant (SS) (p=0.224 for the ANOVA F-test = 1.52), although the difference between the groups I and III was found to be significant (p=0.0415). Dynamic SS deterioration of QoL with age was found in the segment of the impact of hemophilia on the physical health (p<0.0001) and well-being (p=0.0048), self-esteem (p=0.002), feeling of the attitude of other people to a patient (p=0.049). No age-related features of the impact of the disease on family relationships and relationships with friends was found. Improvement of QoL with age was found only in the attitude of patients to treatment (p=0.044). Conclusions. General QoL, as well as the individual psychosocial determinants that make up it, have a clear age-related dependence in children with severe forms of hemophilia A. Most factors of the PF are aggravated with age, as well as the general QoL. Such research findings will be useful in predicting QoL and developing programs for psychosocial adaptation in patients with hemophilia A in Ukraine.

hemophilia, children, quality of life, questionnaire, psychosocial functioning

1. Deshbhratar DP. Comparison of quality of life in adults and children with haemophilia. Imperial journal of interdisciplinary research. 2016;2(7):733-5.
2. Franchini M, Mannucci PM. Hemophilia A in the third millennium. Blood Rev. 2013 Jul;27(4):179-84. DOI: 10.1016/j.blre.2013.06.002. Epub 2013 Jun 28.
3. Chowdary P, Fosbury E, Riddell A, Mathias M. Therapeutic and routine prophylactic properties of rFactor VIII Fc (efraloctocog alfa, Eloctate®) in hemophilia A. J Blood Med. 2016 Sep 12;7:187-98. DOI: 10.2147/JBM.S80814. eCollection 2016.
4. Kosenkova OI, Makarova VI. Problem of quality of life in present-day medicine. Human Ecology. 2007;11:29-34.
5. Novik AA, Ionova TI. Issledovanie kachestva zhizni v pediatrii. Moskva: RAEN, 2013. 136 s. [in Russiаn].
6. Markin AI, Dubey LYa, Komendant KhM, Dubey NV. Health-related quality of life in children with hemophilia А: international experience and national realities. Perinatology and pediatric. Ukraine. 2017;4(72):125-34. DOI: 10.15574/PP.2017.72.125
7. 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. Pediatric hematology and oncology. 2010;27.6:449-61.
8. Tantawy AA, Mackensen SV, El-Laboudy MA, Labib JH, Moftah F, El-Telbany 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. Epub 2011 Jan 27.
9. Haemo-QoL Study Group. Manual [Internet]. Available from: http://haemoqol.de/scoring/manual/
10. Markin AI, Dubei LIa, Khmiliarchuk LI. Ukrainska versiia opytuvalnyka Haemo-QoL: linhvistychna ta kulturna adaptatsiia. Sovremennaia pedyatryia. 2018;1(89):84-9. [in Ukrainian].
11. Markin A, Dubey L. Test-retest reliability of Ukrainian version of the Haemo-QoL questionnaire. EUREKA: Health Sciences. 2018;3:21-9.
12. Markin A. Face and content validity of Ukrainian version of the Haemo-Qol questionnaire. Innovative approaches to the development of science: Materials of international scientific and practical conference June 1, 2018 in Dublin, Ireland. Ed. for the production Holdenblat MA. NGO «European scientific platform». 2018;2:63-7.
13. Markin AI. Yakist zhyttia, poviazana zi zdoroviam, ditei z hemofiliieiu A v Ukraini za rezultatamy pilotnoho testuvannia opytuvalnyka HaemoQoL. The development of medical sciences: problems and solutions: Conference Proceedings, April 27-28, 2018. Brno: Baltija Publishing; 2018. s. 9-11. [in Ukrainian].

«Bulletin of problems biology and medicine» Issue 3 (145), 2018 year, 67-70 pages, index UDK 616.151.5

10.29254/2077-4214-2018-3-1-145-67-70