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Pediatric Rheumatology

, 12:49

First Online: 25 November 2014Received: 20 June 2014Accepted: 28 September 2014

Abstract

BackgroundRheumatic diseases in children are associated with significant morbidity andpoor health-related quality of life HRQOL. There is no health-relatedquality of life HRQOL scale available specifically for children with lesscommon rheumatic diseases. These diseases share several features withsystemic lupus erythematosus SLE such as their chronic episodic nature,multi-systemic involvement, and the need for immunosuppressive medications.HRQOL scale developed for pediatric SLE will likely be applicable tochildren with systemic inflammatory diseases.

FindingsWe adapted Simple Measure of Impact of Lupus Erythematosus in YoungstersSMILEY© to Simple Measure of Impact of Illness in YoungstersSMILY©-Illness and had it reviewed by pediatric rheumatologists forits appropriateness and cultural suitability. We tested SMILY©-Illnessin patients with inflammatory rheumatic diseases and then translated it into28 languages.

Nineteen children 79% female, n=15 and 17 parents participated. The meanage was 12±4 years, with median disease duration of 21 months 1-172months. We translated SMILY©-Illness into the following 28 languages:Danish, Dutch, French France, English UK, German Germany, GermanAustria, German Switzerland, Hebrew, Italian, Portuguese Brazil,Slovene, Spanish USA and Puerto Rico, Spanish Spain, SpanishArgentina, Spanish Mexico, Spanish Venezuela, Turkish, Afrikaans,Arabic Saudi Arabia, Arabic Egypt, Czech, Greek, Hindi, Hungarian,Japanese, Romanian, Serbian and Xhosa.

ConclusionSMILY©-Illness is a brief, easy to administer and score HRQOL scale forchildren with systemic rheumatic diseases. It is suitable for use acrossdifferent age groups and literacy levels. SMILY©-Illness with itsavailable translations may be used as useful adjuncts to clinical practiceand research.

Electronic supplementary materialThe online version of this article doi:10.1186-1546-0096-12-49 contains supplementary material, which is available to authorized users.

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Autor: Lakshmi Nandini Moorthy - Elizabeth Roy - Vamsi Kurra - Margaret GE Peterson - Afton L Hassett - Thomas JA Lehman - Memb

Fuente: https://link.springer.com/







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