Electronic Diary Assessment of Pain in Juvenile Arthritis

描述(申请人提供)：患有幼年特发性关节炎(JIA)的儿童因其疾病而经历波动的疼痛、僵硬和疲劳。尽管医学治疗取得了进步，包括甲氨蝶呤和生物药物的广泛使用，但疼痛仍然是JIA儿童出人意料的常见问题。我们以前已经表明，患有多关节关节炎的儿童在大多数时间(70%)都会经历疼痛，并会产生严重的不良后果，如干扰与年龄相适应的社会、学习和身体功能。然而，人们对这些儿童持续疼痛的日常模式、调节因素和后果知之甚少。我们建议通过电子日记的实时评估来阐明JIA儿童的疼痛体验，以及儿童情绪调节和照顾者反应对疼痛相关残疾的即时影响。75名患有多关节JIA的儿童，年龄在8到16岁，将从杜克大学医学中心的儿童风湿病诊所招募，与他们的主要照顾者一起参与这项研究。同意的家庭将完成疼痛、心理社会适应、情绪调节和身体功能的基线和3个月跟踪测量，并接受在掌上电脑上使用电子日记进行日常数据收集的培训。在基线评估之后，儿童将在两个14天的时间段内每天完成三次瞬时评估，评估疼痛质量、当前情绪状态以及学校、社会和身体领域的功能。同样，主要照顾者将在他们的孩子报告他们对儿童疼痛的反应的同一天完成三次瞬时评估。我们预计疼痛将预示着每一刻的功能。然而，我们预计，成功的儿童情绪调节(在一天内从令人厌恶的情绪状态中恢复或维持理想的情绪状态)和照顾者的赋权反应(促进儿童情绪调节的反应)将减轻疼痛导致JIA儿童功能障碍的程度。这项研究的结果将突出预防JIA儿童疼痛相关残疾的干预领域，潜在地降低医疗保健成本，并提高这些儿童及其家庭的生活质量。在拟议的研究中使用的电子日记方法的症状捕捉也可能被证明对评估个别患者和临床试验的治疗干预的有效性是有用的。 公共卫生相关性：患有幼年特发性关节炎的儿童尽管有新的治疗方法，但仍有疼痛。我们建议使用电子日记数据收集症状来捕获日常症状。这将对从理论上理解JIA儿童的疼痛经历以及如何干预以预防疼痛相关残疾做出重大贡献。数据可能支持对患有这种疾病的儿童进行积极的疼痛控制，并建议在任何情况下对儿童的疼痛进行自我管理的个性化治疗方法。此外，本研究中提出的评估情绪调节的创新方法可以扩大儿童发展研究的更广泛领域，弥合对儿童发展、儿童慢性病和儿童疼痛的研究兴趣。最后，这项研究可以作为未来研究的催化剂，旨在促进其他儿科医学群体对疼痛的医学和心理学知识。

DESCRIPTION (provided by applicant): Children with juvenile idiopathic arthritis (JIA) experience fluctuating pain, stiffness and fatigue as a consequence of their disease. In spite of advances in medical therapy including the widespread use of methotrexate and biologic medications, pain persists as an unexpectedly common problem for children with JIA. We have previously shown that children with polyarticular arthritis experience pain on a majority (70%) of days with substantial adverse consequences such as interference with age appropriate social, academic, and physical functioning. Yet little is known about the daily patterns, moderators, and consequences of persistent pain in these children. We propose to use real-time assessments via electronic diaries to elucidate the pain experience of children with JIA and the moment-to-moment impact of child emotion regulation and caregiver response on pain-related disability. Seventy-five children with polyarticular JIA aged 8 to 16 will be recruited from the pediatric rheumatology clinic at Duke University Medical Center to participate in this study along with their primary caregiver. Consenting families will complete baseline and 3-month follow-up measures of pain, psychosocial adjustment, emotion regulation, and physical function and be trained in the use of electronic diaries on handheld computers for daily data collection. Following baseline assessment, children will complete three momentary assessments per day for two 14-day time periods assessing pain quality, current emotional state, and functioning across school, social, and physical domains. Similarly, primary caregivers will complete three momentary assessments on the same days as their children reporting their responses to child pain. We expect that pain will predict moment-to-moment functioning. However, we anticipate that successful child emotion regulation (within-day recovery from aversive emotional states or maintenance of desirable emotional states) and empowering responses by caregivers (responses that promote child emotion regulation) will lessen the extent to which pain leads to functional impairment in children with JIA. Results of this study will highlight areas for intervention to prevent pain-related disability in children with JIA, potentially reducing health care costs and enhancing quality of life for these children and their families. Symptom capture using the electronic diary methodology employed in the proposed study also may prove to be useful for assessing the effectiveness of therapeutic interventions in both individual patients and clinical trials. PUBLIC HEALTH RELEVANCE: Children with juvenile idiopathic arthritis have pain despite new therapies. We propose to capture daily symptoms using electronic diary data collection symptom. This will result in significant contributions both to the theoretical understanding of the pain experience of children with JIA and how to intervene to prevent pain- related disability. Data may support aggressive pain control in children with this disease and suggest individualized treatment approaches for self-management of a child's pain at any given. Moreover, the innovative methodology proposed in this study for evaluating emotion regulation can expand the broader field of child development research, bridging research interests in child development, childhood chronic illness and child pain. Finally, the study can serve as a catalyst for future research aimed at advancing medical and psychological knowledge of pain in other pediatric medical populations.