Electronic Diary Assessment of Pain in Juvenile Arthritis

描述（由申请人提供）：患有幼年特发性关节炎（JIA）的儿童由于其疾病而经历波动性疼痛、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患儿意想不到的常见问题。我们之前的研究表明，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，并伴有严重的不良后果，如干扰与年龄相适应的社交、学习和身体功能。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。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岁的多关节性JIA患儿及其主要照顾者参加本研究。同意的家庭将完成疼痛、心理社会调整、情绪调节和身体功能的基线和3个月随访测量，并接受使用掌上电脑上的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、当前情绪状态以及在学校、社会和身体领域的功能。同样，初级护理人员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间评估。我们期望疼痛能够预测每一刻的功能。然而，我们预计成功的儿童情绪调节（在一天内从厌恶情绪状态中恢复或维持理想的情绪状态）和照顾者的授权反应（促进儿童情绪调节的反应）将减轻疼痛导致JIA儿童功能损害的程度。这项研究的结果将强调干预领域，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。在本研究中采用的电子日记方法的症状捕获也可能被证明对评估个体患者和临床试验中治疗干预的有效性有用。

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.