Lupus (2019) 0, 1–7 journals.sagepub.com/home/lup PAPER Hindi LupusPRO: cross cultural validation of disease specific patient reported outcome measure of lupus B Pinto 1 , M Jolly 2 , A Dhooria 1 , S Grover 3 , JM Raj 4 , H Devilliers 5 and A Sharma 1 1 Department of Internal Medicine, Post Graduate Institute of Medical Education and Research, Chandigarh, India; 2 Department of Medicine, Division of Rheumatology, Rush University Medical Center, Chicago, USA; 3 Department of Psychiatry, Post Graduate Institute of Medical Education and Research, Chandigarh, India; 4 Department of Biostatistics, St. John’s National Academy of Health Sciences, Bangalore, India; and 5 Department of Internal Medicine, University Hospital Dijon-Burgundy, Dijon, France Background: LupusPRO is a SLE specific patient reported outcomes measure developed and validated in the USA. This study aimed to validate the Hindi version of LupusPRO in sys- temic lupus erythematosus (SLE) patients in India. Methods: Disease activity and damage were assessed using SELENA–SLEDAI and SLICC/ACR damage Index respectively. Demographic and clinical features were recorded. The Hindi Version of LupusPRO and 36- Item Short Form Health Survey (SF-36) were administered for assessment of quality of life. Depression, anxiety and fatigue were assessed using Patient Health Questionnaire 9 (PHQ9), Generalized Anxiety Disorder 7 (GAD7) and Fatigue Severity Scale (FSS) respectively. Internal consistency reliability, test-retest reliability, convergent and discriminant validity (against corresponding domains of the SF-36, fatigue, depression and anxiety), criterion val- idity (against disease activity and damage) and known group validity were tested. Results: A total of 144 (140 females) patients with SLE with a mean age of 32.48  7.26 years participated in the study. The median (interquartile range) SELENA SLEDAI was 2 (5.5). The internal consistency reliability of the LupusPRO domains was >0.7 for most domains (except for lupus symptoms, lupus medication, procreation and social support).We noted good convergent validity of LupusPRO domains with corresponding domains of SF-36, pain vitality with fatigue (FSS) and emotional health domain with depression (PHQ9) and anxiety (GAD7). Criterion validity of lupus symptoms with disease activity was observed. Known group val- idity of the LupusPRO domains with patient reported health status was observed. Confirmatory factor analysis showed a good fit. Conclusion: The Hindi LupusPRO has fair psychometric properties among Indian patients with SLE. Lupus (2019) 0, 1–7. Key words: SLE; quality of life; patient reported outcomes; LupusPRO Introduction Systemic lupus erythematosus is an autoimmune connective tissue disease with multisystem mani- festations. It commonly affects women in the repro- ductive age group. Significant advances have been made in the diagnosis and therapy with subsequent improvement in the survival of patients with lupus. 1 The aim of treatment is to prevent morbidity and mortality and improve quality of life. Physicians monitor disease with validated disease activity and damage scores. These parameters may not necessarily gauge patients’ perspectives of disease. Patient reported outcomes (PROs) are thus essen- tial to measure the actual burden of the disease on an individual patient. PROs provide relevant yet complementary information to disease activity and damage, providing a comprehensive approach to the management of the disease. Quality of life is the most important outcome measure of the PROs and is relevant for both clinical practice and inter- ventional trials. 2 Numerous studies have been done on quality of life in SLE. Most studies have used a generic qual- ity of life questionnaire, that is, the 36-Item Short Form Health Survey (SF-36). 3 Recently disease specific quality of life (QoL) tools have been intro- duced, including Lupus QoL, L-QoL, SLEQOL and LupusPRO. 2 LupusPRO is a validated lupus Correspondence to: A Sharma, Internal Medicine, PGIMER, Chandigarh, India 160012. Email: amansharma74@yahoo.com Received 13 April 2019; accepted 11 September 2019 ! The Author(s), 2019. Article reuse guidelines: sagepub.com/journals-permissions 10.1177/0961203319880340