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Rigshospitalet - en del af Københavns Universitetshospital
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Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

DOI

  1. Growth and puberty in juvenile dermatomyositis: a longitudinal cohort study

    Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

  • Lakshmi Nandini Moorthy
  • Elizabeth Roy
  • Vamsi Kurra
  • Margaret G E Peterson
  • Afton L Hassett
  • Thomas J A Lehman
  • Christiaan Scott
  • Dalia El-Ghoneimy
  • Shereen Saad
  • Reem El Feky
  • Sulaiman Al-Mayouf
  • Pavla Dolezalova
  • Hana Malcova
  • Troels Herlin
  • Susan Nielsen
  • Nico Wulffraat
  • Annet van Royen
  • Stephen D Marks
  • Alexandre Belot
  • Jurgen Brunner
  • Christian Huemer
  • Ivan Foeldvari
  • Gerd Horneff
  • Traudel Saurenman
  • Silke Schroeder
  • Polyxeni Pratsidou-Gertsi
  • Maria Trachana
  • Yosef Uziel
  • Amita Aggarwal
  • Tamas Constantin
  • Rolando Cimaz
  • Theresa Giani
  • Luca Cantarini
  • Fernanda Falcini
  • Silvia Magni Manzoni
  • Angelo Ravelli
  • Donato Rigante
  • Fracnceso Zulian
  • Takako Miyamae
  • Shumpei Yokota
  • Juliana Sato
  • Claudia S Magalhaes
  • Claudio A Len
  • Simone Appenzeller
  • Sheila Oliveira Knupp
  • Marta Cristine Rodrigues
  • Flavio Sztajnbok
  • Rozana Gasparello de Almeida
  • Adriana Almeida de Jesus
  • Lucia Maria de Arruda Campos
  • Clovis Silva
  • Calin Lazar
  • Gordana Susic
  • Tadej Avcin
  • Ruben Cuttica
  • Ruben Burgos-Vargas
  • Enrique Faugier
  • Jordi Anton
  • Consuelo Modesto
  • Liza Vazquez
  • Lilliana Barillas
  • Laura Barinstein
  • Gary Sterba
  • Irama Maldonado
  • Seza Ozen
  • Ozgur Kasapcopur
  • Erkan Demirkaya
  • Susa Benseler
Vis graf over relationer

BACKGROUND: Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic 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 to children with systemic inflammatory diseases.

FINDINGS: We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY©) to Simple Measure of Impact of Illness in Youngsters (SMILY©-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY©-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Nineteen children (79% female, n=15) and 17 parents participated. The mean age was 12±4 years, with median disease duration of 21 months (1-172 months). We translated SMILY©-Illness into the following 28 languages: Danish, Dutch, French (France), English (UK), German (Germany), German (Austria), German (Switzerland), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela), Turkish, Afrikaans, Arabic (Saudi Arabia), Arabic (Egypt), Czech, Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Xhosa.

CONCLUSION: SMILY©-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY©-Illness with its available translations may be used as useful adjuncts to clinical practice and research.

OriginalsprogEngelsk
TidsskriftPediatric Rheumatology Online Journal
Vol/bind12
Sider (fra-til)49
ISSN1546-0096
DOI
StatusUdgivet - 2014

ID: 46272163