Popis: |
Aim of the research. To review the scientific literature on the validated questionnaires related to the quality of life of patients with Autoimmune Bullous Diseases (AIBDs), and to perform the validation process of a questionnaire that would be suitable for use in Lithuania. Objectives. 1. To select AIBDs-specific questionnaires, related to the quality of life of patients with this disease, which would be suitable for use in clinical practice based on a literature review. 2. To perform the validation process of the selected questionnaires that would be suitable for assessment of the quality of life of patients with AIBDs. Methods. Patients with AIBDs, treated at the Clinic of Skin and Venereal Diseases belonging to Kaunas Clinical Hospital of Lithuanian University of Health Sciences, have performed a survey by using the adapted ABQOL and TABQOL questionnaires in Lithuanian language. The research was performed upon receipt of consent (valid from March 2019 to January 2020) from the Bioethics Centre belonging to Lithuanian University of Health Sciences. 10 patients with AIBDs participated in the research. The scope of the studied persons was calculated on the basis of number of patients registered on the database of Rare Skin Diseases Centre, as well as literature review and inclusion/exclusion criteria. In order to assess the credibility of questionnaires, the Cronbach’s alpha coefficient was used. Results of the research. In order to select questionnaires suitable for assessment of the quality of life of patients with AIBDs, the scientific publications, provided in the database of “Pubmed”, were analysed. During the literature review, 5 scientific articles about the validation of ABQOL and TABQOL questionnaires, used in foreign countries, and 23 other scientific sources have been analysed. In compliance with methodological requirements, the questionnaires were adapted and the final versions of ABQOL and TABQOL questionnaires were prepared in Lithuanian language. The calculated Cronbach’s alpha coefficient of ABQOL questionnaire was 0.787 and 0.724 for TABQOL questionnaire. Conclusions. 1. Based on the analysis of the literature, it was decided that ABQOL and TABQOL questionnaires were specifically designed for the above mentioned disease; therefore, they were most suitable for the assessment of the quality of life of patients with AIBDs. 2. The ABQOL and TABQOL questionnairesrelated to the quality of life, were translated into Lithuanian language and adapted; therefore, they are deemed to be suitable for the assessment of the quality of life of patients with AIBDs: the studied persons easily comprehended these questionnaires and good internal consistency of questionnaires was calculated (Cronbach’s alpha coefficient was 0.787 and 0.724 accordingly). Recommendations. In order to assess the quality of life of persons with AIBDs, it is recommended to use ABQOL and TABQOL questionnaires specific to the aforementioned disease. These questionnaires should be completed during every visit; meanwhile, the treatment of patients and their needs for nursing should be adjusted upon demand. |