Sen Ethan S, Morgan Michelle J, MacLeod Rachael, Strike Helen, Hinchcliffe Ann, Dick Andrew D, Muthusamy Brinda, Ramanan Athimalaipet V
Department of Paediatric Rheumatology, Bristol Royal Hospital for Children, Upper Maudlin Street, Bristol, BS2 8BJ, UK.
School of Clinical Sciences, University of Bristol, Bristol, UK.
Pediatr Rheumatol Online J. 2017 Aug 4;15(1):58. doi: 10.1186/s12969-017-0189-6.
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, non-infectious uveitis associated with a systemic disease such as juvenile idiopathic arthritis.
A semi-structured interview was conducted with 10 children and young people aged between 6 and 18 years of age and their parents.
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.
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.
儿童慢性健康状况会对其生活质量产生重大影响。本研究的目的是探讨患有与全身性疾病（如青少年特发性关节炎）相关的慢性非感染性葡萄膜炎的儿童和青少年的主观体验。
对10名年龄在6至18岁之间的儿童和青少年及其父母进行了半结构化访谈。
初步主题分析表明，该疾病的治疗和并发症不仅在患者经历的不适方面，而且在社会孤立感、焦虑和不公正感方面，都对患者的生活质量和情绪健康产生重大影响。
本研究表明，包括“对学校的影响”、“社会因素”和“情绪反应”等主题是影响慢性葡萄膜炎儿童健康相关生活质量（HRQoL）的重要领域。在未来针对葡萄膜炎患者HRQoL的特定工具中，应考虑纳入与这些领域相关的问题。
