1 Division of Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
2 Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Lupus. 2019 Apr;28(5):642-650. doi: 10.1177/0961203319839478. Epub 2019 Mar 24.
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.
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.
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.
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.
本研究旨在（1）描述影响青少年和成年轻度系统性红斑狼疮（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。
本研究纳入了年龄在 12-24 岁的患有 cSLE 的青少年和成年轻度系统性红斑狼疮患者及其主要照顾者。招募是在中西部一家儿童医院的儿科风湿病门诊或医院的 cSLE 活跃门诊登记处进行的。疾病严重程度的信息是从患者的健康记录中获得的。疼痛和疲劳问卷也进行了评估。描述性统计用于分析数据。
31 名青少年和成年轻度系统性红斑狼疮患者及其照顾者参加了六组焦点小组。10 个主要主题从会议中浮现出来；其中 4 个主题同时出现在青少年和成年轻度系统性红斑狼疮患者及其照顾者群体中：对 cSLE 的知识缺陷、限制日常功能的症状、具体为情绪和认知/学习、治疗依从性的障碍和促进因素，以及对未来的担忧。仅出现在青少年群体中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、对人际关系的影响，以及医患沟通/关系。仅出现在照顾者群体中的主题包括需要学校倡导、家庭日程安排的中断，以及对青少年的正常感。
患有 cSLE 的青少年和成年轻度系统性红斑狼疮患者面临着一种终身疾病，其特点是普遍存在疼痛、疲劳、器官损伤、孤立感-社交和/或身体和心理社会教育挑战。本研究证实，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对于增加患有 cSLE 的青少年和成年轻度系统性红斑狼疮患者的自我管理和自主性是必要的。
