LupusPRO is a disease-targeted patient-reported outcome measure that was developed and validated from and among US patients with systemic lupus erythematosus (SLE). We herein report the results of the cross-cultural adaptation and validation study of the Turkish translated version of the LupusPRO. Turkish LupusPRO and the Medical Outcomes Study Short Form (SF-36) (Turkish) were administered to the Turkish lupus patients. Disease activity was ascertained using the physician global assessment (PGA), Safety of Estrogens in Lupus Erythematosus National Assessment-Systemic Lupus Erythematosus Disease Activity Index (SELENA-SLEDAI), and flare (defined by LFA-Lupus Foundation of America). Disease damage was assessed with Systemic Lupus International Collaborating Clinics/American College of Rheumatology damage index (SDI). Also, second Turkish LupusPRO tests were given to the patients to be completed within 2-3 days and sent back to us. Internal consistency reliability, test-retest reliability, and convergent and criterion validity (against disease activity or health status) were tested. All reported p values are two-tailed. The conceptual framework of the LupusPRO was evaluated using confirmatory factor analysis appropriate for categorical data. One hundred two SLE subjects (94 % women) were enrolled. The median (IQR) age and mean disease duration (±SD) were 38.5 (18) years and 60.3 (±56.3) months, respectively. The mean ± SD, SLEDAI, and SDI scores were 3.1 ± 3.7 and 0.52 ± 0.75, respectively. There were 25 patients who had flares at the time of study. Forty-two patients with no change in their health status completed and sent back the second LupusPRO test and were included in the test-retest analysis. Test-retest reliability of LupusPRO domains ranged from 0.87 to 0.97, while internal consistency reliability of the domains ranged from 0.63 to 0.94. Convergent validity with corresponding domains of SF-36 was present. Health-related quality-of-life domains performed well against disease activity measures (PGA, total SLEDAI, LFA flare, and SF-6D-overall health status), establishing its criterion validity. Item-to-factor loadings representing the hypothesized item-to-scale relationships were satisfactory. The model fit for the hypothesized item-to-scale relationships was also satisfactory. The Turkish version of the LupusPRO is valid and appears to perform comparably to the English and Spanish language versions. It can be used as a patient-reported outcome parameter in clinical trials, as well as longitudinal studies for testing responsiveness to change.
Sister Mary Joseph's periumbilical metastatic nodule is an ominous harbinger of an internal malignancy usually originating from gastrointestinal or genital system primary cancers. At the time of diagnosis, they are inoperable and therefore deemed incurable, suggesting an invariably dismal prognosis. Periumbilical neoplastic deposits from primary non-Hodgkin's lymphoma are extremely rare. A 72-year-old white male with a history of gastric cancer was referred with a painful lesion in the umbilicus. A delayed biopsy of the nodule showed diffuse large B-cell lymphoma. After a work up, he was successfully treated with standard combination chemotherapy and achieved complete remission. However, the patient developed central nervous system relapse and died a few months later. Our patient illustrates the importance of obtaining a tissue diagnosis before diagnosing an internal carcinoma as the underlying cause in patients with Sister Mary Joseph's nodule. We should keep in mind that not all periumbilical tumoral deposits are the same.
Background LupusPRO is a disease targeted patient reported outcome measure that was developed and validated in patients with Systemic Lupus Erythematosus (SLE) in the USA. Its Spanish vesion has also been recently validated. Objectives We aimed to develop and validate the Turkish version of the LupusPRO. Methods The Turkish version was prepared by forward and backward translations of the 43 item English LupusPRO (T1) by native Turkish speakers and was pretested in five Turkish individuals living in the USA. The final Turkish version was then offered. Each subject met ACR classification criteria for SLE and resided in Turkey. SF-36 (Turkish) was also administered. Disease activity was assessed using the physician’s global assessment (PGA) and SELENA-SLEDAI, and flare (Yes/No). Disease damage was assessed using the SLICC-ACR SDI. For test-retest reliability (TRT), patients were instructed to re-do the Turkish LupusPRO test within 2-3 days. Internal consistency reliability (ICR), criterion validity (against measures of disease activity or health status) and convergent validity (corresponding domains of the SF36) were also assessed. A ‘p-value’ <0.05 was considered significant. The conceptual framework of the LupusPRO was evaluated using confirmatory factor analysis appropriate for categorical data. Results 102 SLE subjects (94% women) were enrolled. The mean ±SD age (yrs) and disease duration were 39.0 ±11.7 and 5.0 ±4.6, respectively. The mean ±SD, SLEDAI and SDI scores were 3.1 ±3.7 and 0.52 ±0.75, respectively. There were 25 patients who had flares. PGA scores were; 0 for 26%, 1 for 60%, 2 for 11% and, 3 for 5% of the patients. 42 patients were included in the test-retest analysis. Psychometric properties of the Turkish LupusPRO are shown in the table. Item to factor loadings representing the hypothesized item to scale relationships were satisfactory. The model fit for the hypothesized item to scale relationships was also satisfactory. Conclusions The Turkish version of the LupusPRO is valid and appears to perform comparably to the English version. It can be used as a patient-reported outcome parameter in clinical trials, as well as longitudinal studies for testing responsiveness to change. Disclosure of Interest A. Kaya: None Declared, B. Goker: None Declared, E. Cura: None Declared, M. Tezcan: None Declared, A. Tufan: None Declared, R. Mercan: None Declared, B. Bitik: None Declared, S. Haznedaroglu: None Declared, M. Ozturk: None Declared, J. Block: None Declared, R. Mikolaitis-Preuss: None Declared, M. Jolly Grant/research support from: Lupus Foundation of America, MedImmune, Glaxo SmithKline
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