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Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration.

ABSTRACT: 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.

SUBMITTER: Moorthy LN

PROVIDER: S-EPMC4334772 | biostudies-literature | 2014

REPOSITORIES: biostudies-literature

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Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration.

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

Pediatric rheumatology online journal 20141125

<h4>Background</h4>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 ...[more]

PMID: 25705138

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Project description:BACKGROUND:Systemic sclerosis (SSc) is a rare autoimmune disease characterized by fibrosis of the skin and the involvement of multiple internal organs. Previous studies reported poorer health-related quality of life (HRQoL) in patients with SSc compared with the general population. However, very little is known about how HRQoL in SSc patients compares with that in patients with other systemic autoimmune diseases, such as rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and Sjogren's syndrome (SjS). Thus, the main aim of this study was to compare HRQoL in SSc patients, patients with other rheumatic diseases, and the general population. METHODS:In this cross-sectional study, patients from the rheumatology clinics of Seoul National University Hospital with SSc, RA, SLE, and SjS were enrolled via a random sampling technique. HRQoL was captured by the Short Form (36) health survey (SF-36), the Short Form Six-Dimensional health index (SF-6D), and the EuroQol Five-Dimensional descriptive system (EQ-5D). Demographic characteristics and standardized disease activity for each disease were also obtained. Previously reported data from 600 healthy Koreans were used for the healthy controls. An ANCOVA test was used to compare the SF-36, SF-6D, and EQ-5D values between study subjects with adjustments for age, sex, disease duration, comorbidities, and disease activity status. RESULTS:One hundred twenty patients were included in each of the SSc, RA, SLE, and SjS cohorts. Patients with rheumatic diseases had significantly lower SF-36, SF-6D, and EQ-5D scores than healthy controls (all P?<?0.001). After statistical adjustments, SSc patients reported significantly lower mental component summary (MCS) scores than patients with RA (P?<?0.001) or SLE (P?=?0.001). Specifically, the mental health and general health domains were significantly lower in SSc patients than reported in RA or SLE patients (P?<?0.001 and P?=?0.001, respectively, in both domains). In SSc patients, higher modified Rodnan skin scores (mRSS) correlated with lower MCS scores. CONCLUSIONS:SSc patients report poorer HRQoL than patients with RA or SLE. The extent of skin involvement is associated with poorer HRQoL in SSc patients. TRIAL REGISTRATION:NCT03257878 . Registered 22 August 2017.

Dataset Information

Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration.

Publications

Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration.

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