Systemic lupus erythematosus (SLE) is multi-system autoimmune rheumatic disorder with very broad clinical picture. Due to its generalized nature it influences all aspects of patient’s life: physical, psychological and social well-being. With the development in diagnosis and treatment of SLE, median survival increased significantly over the past years. This article focused on the elements of quality of life, which are especially important for SLE patients, like body image, fatigue, family relations, disease impact on professional and social life. The quality of life could be measured with two different instruments: generic and disease-specific questionnaires. Generic ones are used to assess the quality of life of patients comparing to general population whereas specific questionnaires are designed to measure outcomes in one specific disease. The aim of the article is to describe HRQoL in SLE patients and the variables important for patients which have impact on it.

BackgroundSystemic Lupus Erythematosus (SLE) is a chronic multisystemic autoimmune disease with a very broad clinical picture. Due to its generalized nature, it affects all aspects of the patient’s life, such as physical, psychological and social well-being. As a result, the quality of life in patients with SLE is substantially decreased. Therefore, it is recommended to introduce evaluation of quality of life in clinical trials and in the daily practice.LupusPRO is a disease-targeted, patient reported outcome measure developed for assessment of quality of life in patients with Systemic Lupus Erythematosus. Originally, the questionnaire was validated among US patients of varied ethnic background and both genders.What differs LupusPRO from previous disease-specific quality of life questionnaire used in SLE is its comprehensiveness. It comprises two constructs: health- related quality of life domains (HRQOL) and non- health - related quality of life domains.ObjectivesThe aim of this study is to carry out a cross-cultural adaptation and validation of the Polish-translated version of LupusPRO.MethodsThe Polish version of LupusPRO was administrated along with the 36-Item Short Form Health Survey (SF-36) and EQ-5D-5L questionnaire and Hospital Anxiety and Depression Scale (HADS). At the same time, demographics and clinical characteristics were collected. Disease activity, damage and exacerbation were assessed using SELENA-SLEDAI, SLICC/ACR DI and LFA Flare. Internal consistency reliability, test-retest reliability, convergent validity (against corresponding domains of SF-36) and criterion validity (against disease activity and damage) and known group validity were tested.ResultsA total of 199 (91% females) patients with SLE with a mean age of 42.6 ⊥12.62 years participated in the study. The mean SELENA-SLEDAI reached 5.3(⊥ 5.9) points and SLICC/ACR DI was observed at 1.3(⊥ 2.0) points. The internal consistency reliability of LupusPRO domains ranged between 0.737-0.925 (except for Lupus Symptoms, Social Support, Coping and Satisfaction with care). For all domains, except Social Support, test-retest reliability exceeded 0.7. Convergent validity with corresponding domains of the SF-36 was good (r>0,5). All health-related quality of life domains performed well against disease activity and damage measure, establishing its criterion validity. Known group validity against disease activity was observed. Confirmatory factor analysis showed a good fit.ConclusionThe Polish version of LupusPRO has proved to have fair psychometric properties among Polish patients with SLE. It is the first disease-specific quality of life questionnaire in Polish, validated among Polish patients with Systemic Lupus Erythematosus.References[1]Jolly M, Pickard AS, Block JA et al. Disease-specific patient reported outcome tools for systemic lupus erythematosus. Semin Arthritis Rheum. 2012: 42(1): 56-65. doi:10.1016/j.semarthrit.2011.12.005.Disclosure of InterestsNone declared