Cross sectional, qualitative thematic analysis of patient perspectives of disease impact in juvenile idiopathic arthritis-associated uveitis

被引:31
作者
Sen, Ethan S. [1 ,2 ]
Morgan, Michelle J. [3 ]
MacLeod, Rachael [4 ]
Strike, Helen [1 ]
Hinchcliffe, Ann [5 ]
Dick, Andrew D. [2 ,5 ,6 ,7 ]
Muthusamy, Brinda [8 ]
Ramanan, Athimalaipet V. [1 ,2 ]
机构
[1] Bristol Royal Hosp Children, Dept Paediat Rheumatol, Upper Maudlin St, Bristol BS2 8BJ, Avon, England
[2] Univ Bristol, Sch Clin Sci, Bristol, Avon, England
[3] Sirona Care & Hlth, Community Childrens Hlth Partnership, Bristol, Avon, England
[4] Bristol Royal Hosp Children, Dept Paediat, Bristol, Avon, England
[5] Bristol Eye Hosp, Retinal Treatment & Res Unit, Bristol, Avon, England
[6] Moorfields Eye Hosp NHS Fdn Trust, Natl Inst Hlth Res Biomed Res Ctr, London, England
[7] UCL Inst Ophthalmol, London, England
[8] Cambridge Univ Hosp NHS Fdn Trust, Dept Ophthalmol, Cambridge, England
来源
PEDIATRIC RHEUMATOLOGY | 2017年 / 15卷
关键词
Juvenile idiopathic arthritis; Uveitis; Quality of life; Patient-reported outcome measures; OF-LIFE ASSESSMENT; OUTCOME MEASURES; CHILDREN; STANDARDIZATION; QUESTIONNAIRE; NOMENCLATURE; RELIABILITY; VALIDITY;
D O I
10.1186/s12969-017-0189-6
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
Background: Chronic health conditions in children can have a significant impact on their quality of life. The aim of this study was to explore the subjective experience of children and young people being treated for chronic, noninfectious uveitis associated with a systemic disease such as juvenile idiopathic arthritis. Methods: A semi-structured interview was conducted with 10 children and young people aged between 6 and 18 years of age and their parents. Results: Preliminary thematic analysis indicated that both the treatment and complications of the disorder have a significant impact on the quality of life and emotional well-being of patients, not only in terms of the discomfort experienced but also in perceptions of social isolation, anxiety and sense of injustice. Conclusion: This study shows that themes including "impact on school", "social factors" and "emotional reactions" are important domains influencing health-related quality of life (HRQoL) in children with chronic uveitis. Inclusion of questions relating to these domains should be considered in future uveitis-specific tools examining HRQoL in these patients.
引用
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页数:8
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