Measuring of quality of life in autoimmune blistering disorders in Poland. Validation of disease – specific Autoimmune Bullous Disease Quality of Life (ABQOL) and the Treatment Autoimmune Bullous Disease Quality of Life (TABQOL) questionnaires

© 2016 Medical University of Bialystok Purpose Autoimmune bullous dermatoses (AIBD) are rare, severe diseases resulting from some antibodies activity against the different adhesion structures within the skin and/or mucosa. Few studies investigated quality of life (QOL) in AIBD by generic and dermatology-specific instruments, all reporting strong impact on QOL. Recently, disease-specific measurement tools have been developed: Autoimmune Bullous Disease Quality of Life (ABQOL) and Treatment of Autoimmune Bullous Disease Quality of Life (TABQOL) questionnaires. The aim of this study was to test the reliability and validity of ABQOL and TABQOL by developing the first foreign language versions and to evaluate ABQOL and TABQOL in Polish patients. Material and methods The study enrolled 80 patients from the tertiary referral center for AIBD at the outpatient clinic or on admission to the hospital. Sixty six patients completed the 17-item questionnaires of each ABQOL and TABQOL at day 0 and after 5–7 days. Both questionnaires were translated into Polish according to protocol. Results The internal consistency and test–retest reliability were high (Cronbach α = 0.95 for ABQOL, α = 0.87 for TABQOL), (R = 0.98 for ABQOL, R = 0.86 for TABQOL). In convergent validity, the correlation of ABQOL and TABQOL was strong (R = 0.81), but low with objective disease activity scales. The strongest impact of AIBD on QOL has been observed in flares and in patients with the onset below 70 years of age. The patients with bullous pemphigoid had the highest QOL compared to other AIBD patients. Conclusions The ABQOL and TABQOL are reliable and valid instruments for the assessment of QOL in AIBD