Psychosocial Department, Emma Children's Hospital, Academic Medical Centre, A3-241, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands.
Rheumatology (Oxford). 2012 Feb;51(2):368-74. doi: 10.1093/rheumatology/ker378. Epub 2011 Dec 16.
It is generally recognized that for all children the fulfilling of age-specific psychosocial developmental tasks in childhood is of great importance to adjustment in adult life, including participation in society. For young adults with JIA this is more difficult. We assume that the achievement of psychosocial milestones while growing up (psychosocial developmental trajectory) is also related to labour participation. A proportion of all young adults with JIA have to apply for disability benefits. This study assessed the health-related quality of life (HRQOL) and the psychosocial developmental trajectory of young female beneficiaries with JIA compared with peers from the Dutch general population.
Young females with disability benefits because of JIA completed the RAND-36 (HRQOL) and the Course of Life Questionnaire (psychosocial developmental trajectory). Differences between respondents and the peer group were tested using analysis of variance and logistic regression analysis by group and age.
The beneficiaries reported worse HRQOL than the peer group and achieved fewer milestones, or achieved the milestones at a later age than the peer group in the autonomy, social and psychosexual domain.
Young females with JIA who have to apply for disability benefits are at risk for impaired HRQOL and a delay in their psychosocial developmental trajectory. Parents, physicians and other health-care providers should pay systematic attention to the development of social and independent functioning of children with JIA in order to optimize their adaptation to society at the time of transition to adulthood.
人们普遍认为，对于所有儿童来说，在童年时期完成特定年龄段的心理社会发展任务，对成年后的适应，包括参与社会，都非常重要。对于患有幼年特发性关节炎（JIA）的年轻成年人来说，这更加困难。我们假设，在成长过程中（心理社会发展轨迹）实现心理社会里程碑，也与劳动参与有关。一部分患有 JIA 的年轻成年人必须申请残疾津贴。本研究评估了患有 JIA 的年轻女性残疾津贴受助人的健康相关生活质量（HRQOL）和心理社会发展轨迹，与荷兰一般人群中的同龄人进行比较。
患有 JIA 并因残疾而获得津贴的年轻女性完成了 RAND-36（HRQOL）和生活轨迹问卷（心理社会发展轨迹）。使用方差分析和按组和年龄的逻辑回归分析测试了受访者与同龄人群体之间的差异。
受益人与同龄人群体相比，报告的 HRQOL 更差，在自主性、社会和性心理领域取得的里程碑更少，或者比同龄人群体更晚达到里程碑。
因残疾而申请津贴的患有 JIA 的年轻女性存在 HRQOL 受损和心理社会发展轨迹延迟的风险。父母、医生和其他医疗保健提供者应该系统地关注患有 JIA 的儿童的社会和独立功能的发展，以便在向成年期过渡时优化他们对社会的适应。
