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Social aspects of primary immunodeficiencies

SOVREMENNAYA PEDIATRIYA.2015.7(71):120-123; doi 10.15574/SP.2015.71.120 

Social aspects of primary immunodeficiencies 

Bondarenko A. V.

P.L. Shupyk National Medical Academy for Postgraduate Education, Kyiv, Ukraine 

Primary immunodeficiencies (PID) are severe disease resulting from congenital defects of the immune system. A significant number of patients are children with disabilities. Improved diagnostic and treatment led to an increasing the number of patients who survive and reach adult age. This raises the problem of minimizing the limitations caused by the disease. Using questionnaires with the elements of interviews and the focus group method quality of life, social activities, psychological comfort were assessed among patients with PID and their parents. It has been established that PID adversely affects the quality of life of patients, limiting their physical capabilities and social activity. The greatest impact on quality of life is caused by treatment regularity and its continuity. Medical-sociological study revealed a number of unresolved problems of families of PID patients: unequal access to medical and diagnostic care, stigma of the disease, long way to the diagnosis, significant socio-economic problems in the paying drugs, psychological problems of perception of the diagnosis, traetment compliance, the lack of information, problems in attending the organized children's groups and schools. 

Key words: primary immunodeficiency, quality of life, treatment compliance, social activity, medical and sociological research, children, disability. 


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