Ocena poziomu jakości życia chorych na hemofilię

Abstract

Introduction:Haemophilia is a genetic disease. Bleeding, pain, temporary or long-term lack of physical activity, and even the risk of disability could have a negative impact on the quality of life. The aim of the paper is to evaluate the quality of life of patients with haemophilia, and to provide answers to the following questions: 1. What is the quality of life of patients with haemophilia? 2. Which sphere of life is given the highest and which is given the lowest score? 3. Is there a connection between the sociodemographic data, the health situation and the quality of life? Materials and methods: In total 163 adults diagnosed with haemophilia who are mainly treated at home and living in different parts of Poland were included in the survey. All sociodemographic data were collected using an author-designed questionnaire. The quality of life was measured using the WHOQOL-100 questionnaire proposed by World Health Organization. Results: All surveyed patients were males diagnosed with haemophilia A, which is consistent with the epidemiology of the disease and the fact that haemophilia A is more frequent in Poland than haemophilia B. Most of the males (144) were diagnosed with severe haemophilia, 18 with moderate and only 6 with mild haemophilia. What is more, 126 (75%) respondents had type C hepatitis. Conclusions:In the field of 6 life spheres measured with the use of the WHOQOL-100 questionnaire the highest score -14.66 -was gained in the sphere of spirituality, religion and personal beliefs. The lowest score -12.99 -was gained in the physical sphere, mostly concerning pain and feelings of discomfort. The outcome of 12.89 was gained in the environmental sphere. After detailed analysis of the researched material there was a conclusion made: 1. A group of men with inborn haemophilia demonstrate an average quality of life, comparable to the level of life of sick people living in other European countries. 2. The researched group give the highest estimate to the spiritual sphere of life, religion and personal beliefs, while the physical and environmental spheres were given the lowest estimate. 3. The degree of seriousness of haemophilia is of core importance when it comes to the level of life. Type C hepatitis and the status of pensioner is also a serious matter.