Electronic Diary Assessment of Pain in Juvenile Arthritis

描述（由申请人提供）：幼年特发性关节炎（JIA）患儿会因疾病而出现波动性疼痛、僵硬和疲劳。尽管医学治疗取得了进步，包括广泛使用甲氨蝶呤和生物药物，但疼痛仍然是JIA儿童的常见问题。我们以前已经表明，患有多关节关节炎的儿童在大多数（70%）的日子里都会经历疼痛，并产生严重的不良后果，如干扰与年龄相适应的社交，学术和身体功能。然而，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使用实时评估来阐明JIA儿童的疼痛体验，以及儿童情绪调节和护理人员对疼痛相关残疾的反应的即时影响。将从杜克大学医学中心的儿科风湿病诊所招募75名8至16岁的多关节JIA儿童，与他们的主要照顾者一起沿着参加本研究。康复家庭将完成基线和3个月的随访测量，包括疼痛、心理社会适应、情绪调节和身体功能，并接受在手持电脑上使用电子日记进行日常数据收集的培训。在基线评估后，儿童将在两个14天的时间内每天完成三次短暂评估，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孩子疼痛的反应的同一天完成三次瞬时评估。我们希望疼痛能够预测每时每刻的功能。然而，我们预计，成功的儿童情绪调节（在一天内从厌恶的情绪状态或维持理想的情绪状态）和授权的反应，由照顾者（反应，促进儿童情绪调节）将减少疼痛导致功能障碍的程度与JIA儿童。这项研究的结果将突出干预领域，以预防JIA儿童的疼痛相关残疾，可能降低医疗保健成本，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获也可能被证明是有用的，在个别患者和临床试验的治疗干预措施的有效性评估。 公共卫生相关性：尽管有新的治疗方法，患有幼年特发性关节炎的儿童仍有疼痛。我们建议使用电子日志收集症状数据来捕获日常症状。这将导致显着的贡献都与JIA儿童的疼痛经验的理论理解和如何干预，以防止疼痛相关的残疾。数据可能支持积极控制这种疾病的儿童疼痛，并建议在任何给定的儿童疼痛的自我管理的个性化治疗方法。此外，本研究提出的评估情绪调节的创新方法可以扩展儿童发展研究的更广泛领域，弥合儿童发展，儿童慢性疾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，旨在提高其他儿科医学人群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.