Self-management and adherence in childhood-onset systemic lupus erythematosus: what are we missing?
Self-management and adherence in childhood-onset systemic lupus erythematosus: what are we missing?
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DOI：
10.1177/0961203319839478
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发表时间：
2019-04-01
期刊：
影响因子：
2.6
通讯作者：
Modi, A. C.
中科院分区：
文献类型：
--
作者：
Harry, O.;Crosby, L. E.;Modi, A. C.
目的本研究的目的是（1）描述影响青少年和年轻成人（AYA）儿童期发作的系统性红斑狼疮（cSLE）患者自我管理行为和生活质量的因素;（2）通过焦点小组确定治疗依从性的障碍和促进因素。方法对12-24岁的cSLE患者及其主要照顾者进行调查。在中西部儿童医院或该医院的cSLE活跃临床登记处的儿科风湿病门诊访视期间进行招募。有关疾病严重程度的信息来自患者健康记录。进行疼痛和疲劳问卷调查。采用描述性统计分析数据。结果31名AYA患者和照顾者参加了6个焦点小组。会议中出现了十大主题; AYA和护理人员小组都表达了四个主题：关于cSLE的知识缺陷，限制日常功能的症状，特别是情绪和认知/学习，坚持的障碍和促进因素，以及对未来的担忧。AYA参与者独有的主题包括限制日常功能的症状-疼痛/疲劳，自我护理和管理，对个人关系的影响，以及医疗保健提供者的沟通/关系。对于照顾者群体来说，独特的主题包括需要学校宣传，家庭时间表的中断，以及青少年的正常感。结论：患有cSLE的AYA面临终身疾病，其特征为广泛疼痛、疲劳、器官损伤、孤立社会和/或身体和心理社会教育挑战。这项研究证实，持续的心理社会支持，健康信息教育，依从性干预和个性化治疗计划是必要的，以提高自我管理和自主性与cSLE的AYA。
Objectives The aims of this study are (1) to characterize factors influencing self-management behaviors and quality of life in adolescent and young adult (AYA) patients with childhood-onset systemic lupus erythematosus (cSLE) and (2) to identify barriers and facilitators of treatment adherence via focus groups. Methods AYAs with cSLE ages 12-24 years and primary caregivers of the adolescents participated in this study. Recruitment occurred during pediatric rheumatology clinic visits at a Midwestern children's hospital or the hospital's cSLE active clinic registry. Information about disease severity was obtained from patient health records. Pain and fatigue questionnaires were administered. Descriptive statistics were used to analyze data. Results Thirty-one AYA patients and caregivers participated in six focus groups. Ten major themes emerged from sessions; four were expressed both by the AYA and caregiver groups: knowledge deficits about cSLE, symptoms limiting daily function, specifically mood and cognition/learning, barriers and facilitators of adherence, and worry about the future. Themes unique to AYA participants included symptoms limiting daily functioning-pain/fatigue, self-care and management, impact on personal relationships, and health care provider communication/relationship. For caregiver groups unique themes included need for school advocacy, disruption of family schedule, and sense of normalcy for their adolescent. Conclusion AYAs with cSLE face a lifelong disease characterized by pervasive pain, fatigue, organ damage, isolation-social and/or physical-and psycho-socioeducational challenges. This study confirmed that continued psychosocial support, health information education, adherence interventions, and personalized treatment plans are necessary to increase self-management and autonomy in AYAs with cSLE.