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Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
Health-related quality of life of patients with juvenile dermatomyositis: results from the paediatric rheumatology international trials organisation multinational quality of life cohort study
Arthritis Care and Research, Volume 61, No. 4, Year 2009
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Description
Objective. To investigate the health-related quality of life (HRQOL) change over time, as measured by the Child Health Questionnaire (CHQ), and its determinants in patients with active juvenile dermatomyositis (DM). Methods. We assessed patients with juvenile DM at both baseline and 6 months of followup, and healthy children age ≤18 years. Potential determinants of poor HRQOL included demographic data, physician's and parent's global assessments, muscle strength, functional ability as measured by the Childhood Health Assessment Questionnaire (C-HAQ), global disease activity assessments, and laboratory markers. Results. A total of 272 children with juvenile DM and 2,288 healthy children were enrolled from 37 countries. The mean ± SD CHQ physical and psychosocial summary scores were significantly lower in children with juvenile DM (33.7 ± 11.7 versus 54.6 ± 4.1) than in healthy children (45.1 ± 9.0 versus 52 ± 7.2), with physical well-being domains being the most impaired. HRQOL improved over time in responders to treatment and remained unchanged or worsened in nonresponders. Both physical and psychosocial summary scores decreased with increasing levels of disease activity, muscle strength, and parent's evaluation of the child's overall well-being. A C-HAQ score >1.6 (odds ratio [OR] 5.06, 95% confidence interval [95% CI] 2.03-12.59), child's overall well-being score >6.2 (OR 5.24, 95% CI 2.27-12.10), and to a lesser extent muscle strength and alanine aminotransferase level were the strongest determinants of poor physical well-being at baseline. Baseline disability and longer disease duration were the major determinants for poor physical well-being at followup. Conclusion. We found that patients with juvenile DM have a significant impairment in their HRQOL compared with healthy peers, particularly in the physical domain. Physical well-being was mostly affected by the level of functional impairment. © 2009, American College of Rheumatology.
Authors & Co-Authors
Apaz, María Teresa
Italy, Genoa
Paediatric Rheumatology International Trials Organisation
Magalhães, Cláudia Saad
Italy, Genoa
Paediatric Rheumatology International Trials Organisation
Pistorio, Angela
Italy, Genoa
Servizio Di Epidemiologia e Biostatistica
Ravelli, Angelo
Italy, Genoa
Università Degli Studi Di Genova
de Oliveira Sato, Juliana De Oliveira
Italy, Genoa
Paediatric Rheumatology International Trials Organisation
Marcantoni, Maria Beatriz
Italy, Genoa
Paediatric Rheumatology International Trials Organisation
Meiorin, Silvia Mónica
Italy, Genoa
Paediatric Rheumatology International Trials Organisation
Filocamo, Giovanni
Italy, Genoa
Paediatric Rheumatology International Trials Organisation
Pilkington, Clarissa A.
United Kingdom, London
Great Ormond Street Hospital for Children Nhs Foundation Trust
Maillard, Susan M.
United Kingdom, London
Great Ormond Street Hospital for Children Nhs Foundation Trust
Al-Mayouf, Sulaiman Mohammed
Saudi Arabia, Riyadh
King Faisal Specialist Hospital and Research Centre
Prahalad, Sampath
United States, Salt Lake City
University of Utah Health Sciences
Fasth, Anders L.
Sweden, Gothenburg
Göteborgs Universitet
Joos, Rik
Belgium, Ghent
Universitair Ziekenhuis Gent
Schikler, Kenneth Noel
United States, Louisville
University of Louisville Health Sciences Center
Mozolová, Dagmar
Slovakia, Bratislava
University Children's Hospital Bratislava
Landgraf, Jeanne M.
United States, Boston
Healthactchq
Martini, Alberto
Italy, Genoa
Università Degli Studi Di Genova
Ruperto, Nicolino
Italy, Genoa
Paediatric Rheumatology International Trials Organisation
Italy, Genoa
Istituto Giannina Gaslini
Statistics
Citations: 48
Authors: 19
Affiliations: 12
Identifiers
Doi:
10.1002/art.24343
ISSN:
21514658
Research Areas
Disability
Maternal And Child Health
Study Design
Cohort Study
Case-Control Study
Study Approach
Quantitative