Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration
BACKGROUND: Health-related quality of life (HRQOL) is an important clinical outcome in pediatric systemic lupus erythematosus (SLE). We developed \“Simple Measure of the Impact of Lupus Erythematosus in YoungstersV]” (SMILEY©), a novel, brief, valid and reliable health-related quality of life (HRQOL) tool for children with systemic lupus erythematosus (SLE). SMILEY© has parallel child/parent reports with 5 faces-scale responses and percentage scores. Higher scores mean better HRQOL. The 4 domains of SMILEY© are: Effect on Self, Limitations, Burden of SLE and Social. SMILEY© is valid in US-English. We are currently conducting cross-cultural validation of SMILEY worldwide. PURPOSE: Objective of our study is to conduct cross-cultural adaptation and validation of SMILEY0 worldwide. In this abstract we will report updates on international recruitment, translation, adaptation and validation of SMILEY©. METHODS: Centers worldwide are invited for participation in this study. Cross-cultural adaptation for each language comprises translation, back-translation and review by expert. For validation, children 2-18 years with SLE and parents will complete the appropriate SMILEY© translation, Pediatric Quality of Life Inventory Generic/Rheumatology scales, and Childhood Health Assessment Questionnaire. We will obtain data on demographics, comorbidity, medications, and SLE-related parameters. Subjects will complete another copy of SMILEY© and return in 10 days to assess test-retest reliability. At 3-month intervals, subjects will complete SMILEY© and physicians will assess their disease activity. We are determining validity, reliability, and responsiveness to change in disease activity. RESULTS: 54 centers worldwide are participating (37 have ethics committee approval; 33 are enrolling) and are part of the International SMILEY collaborative group (participants are listed under Table 1). Translation and adaptation of the following 21 SMILEY© versions are complete (tablel): Arabic, Chinese (Mandarin), Danish, Dutch, English for UK, French, German, German for Austria, Greek, Hebrew, Hindi, Italian, Japanese, Portuguese for Brazil, Serbian, Slovene, Spanish for Argentina, Spanish for Mexico, Spanish for Spain, Spanish for US and Puerto Rico, and Turkish. Currently, we are translating and adapting SMILEY© into Czech, English for Australia, German for Switzerland, Hungarian, Malayali, Romanian, Spanish for Costa Rica, Spanish for Colombia, and Spanish for Venezuela. We intend to translate SMILEY© into English for Ireland and other languages. We are in the process of validating the following translations of SMILEY©: Arabic, Chinese (Mandarin), Danish, Dutch, English for UK, French, Hindi, Italian, Japanese, Portuguese for Brazil, Slovene, Spanish for Argentina, Spanish for Mexico, Spanish for Spain, Spanish for US and Puerto Rico, and Turkish (Table 1). Preliminary data analysis from Spanish (Spain-presented EULAR 2009), Portuguese (Brazil) and Italian versions (unpublished) showed SMILEY© to be valid. A preliminary analysis of across five countries (Argentina, Brazil, Italy, Netherlands and Spain) showed that SMILEY© performed uniformly. CONCLUSION: Cross-cultural validation of SMILEY© will enable uniform assessment of HRQOL, an important outcome to consider while evaluating treatment success. Currently this international project is ongoing and we are actively recruiting other centers.
Moorthy, L. N. (2011). "Cross cultural validation of a novel quality of life scale for pediatric lupus - Update on international recruitment, translation, adaptation and validation." Clinical and Experimental Rheumatology 29(2): 429.
||systemic lupus erythematosus||Both||2 - 18||
Measure does not require training
Less than 5 min