ATTRIBUTES OF SICKLE CELL PAIN IN INFANTS/YOUNG CHILDREN

描述(由申请人提供)： 我们过去8年的研究表明，大多数镰状细胞疼痛是在家中通过 年龄较大的儿童和青少年，以及婴幼儿家庭。在这笔赠款中 建议，我们将继续确定血管闭塞和其他疼痛的发生率 患有SCD的婴幼儿使用父母每日报告，适当情况下，儿童 当这些孩子达到学龄时，自我报告。每日父报告格式将利用 每日电子邮件或自动电话报告与工作人员发起的双周电话相结合 对婴儿的父母进行访谈，然后使用PDA为婴儿的父母写电子日记 年幼的孩子；所有这些都将比以前的 使用纸质日记。我们还将结合第二个项目，审查 这些婴儿镰刀痛的发生率和/或频率与不同的 血液学和生物学指标。这项调查的重点将扩大到 疼痛发生率与胎儿血红蛋白、红细胞内皮细胞黏附 和凝血激活，包括白细胞、血小板和内皮细胞的测量 激活。根据家长报告的信息和我们的临床经验，对于我们的 第二个项目目标，我们将制定、实施、评估和传播一个由家长主导的 用于管理婴儿和儿童镰刀痛的家庭疼痛管理方案 年幼的孩子。这些管理协议及其相关的教育材料将 解决我们以前的研究中发现的一些疼痛管理问题，包括 镇痛剂的剂量和频率不足，以及评估和重新评估不足 痛苦的感觉。家庭和医疗团队之间可靠的通信以及可编程的PDA将为实施和评估此类计划提供独特的机会。最后，我们将检验儿科疼痛和儿科心理学文献中的几个理论和经验模型，以此来解释SCD学龄儿童和青少年中心理社会因素(如应对策略、亲子互动)与疼痛(功能障碍)和生活质量(残疾)的自我报告之间的关系。这些研究将在儿童期中期(7-12岁)和青春期(13-17岁)SCD儿童的横断面中检查这些因素。之所以选择这些年龄段，是因为儿童在童年中期就会发展出自尊和能力感，我们在临床上也会在童年中期开始看到反复发作的疼痛综合征的发展。研究影响有效和无效疼痛自我管理技能的动态将为提高这些儿童的能力提供信息，这些信息将提供初步信息，可用于在儿童中期为我们的纵向队列制定未来的干预措施。

DESCRIPTION (provided by applicant): Our research over the last 8 years suggests that most sickle cell pain is managed at home by older children and adolescents, and by families of infants and young children. In this grant proposal, we will continue to determine the incidence of vaso-occlusive and other pain in infants and young children with SCD using parental daily reports, and where appropriate, child self-report as these children reach school-age. Daily parent-report formats will utilize a combination of daily email or automated phone report and staff initiated bi-weekly telephone interviews for parents of infants, followed by electronic daily diaries using PDAs for parents of young children; all of which will have considerable advantages compared with the previous use of paper diaries. We will also examine, in conjunction with Project II, the relationship between the incidence and/or frequency of sickle pain in these infants and various hematologic and biologic parameters. The focus of this investigation will expand beyond the relationship between pain incidence, fetal hemoglobin, erythrocyte endothelial cell adhesion, and coagulation activation, to include measures of WBC, platelet, and endothelial cell activation. Based on information from parent report and our clinical experience, for our second project Aim, we will develop, implement, evaluate, and disseminate a parentmediated home pain management protocol for the management of sickle pain in infants and young children. These management protocols and their associated educational materials will address some of the pain management issues identified in our previous studies, including inadequate dosing and frequency of analgesics, and inadequate assessment and reassessment of pain. The availability of reliable communication between family and the healthcare team and programmable PDAs will provide a unique opportunity to implement and evaluate such a program. Finally, we will examine several theoretic and empirical models from the pediatric pain and pediatric psychology literatures for their usefulness in explaining relationships between psychosocial factors (e.g., coping strategies, parent-child interactions) and the self-report of pain, (functional impairment) and quality of life (disability) in school-age children and adolescents with SCD. These studies will examine these factors in a cross-section of children with SCD in mid-childhood (7-12 years old) and adolescence (13-17). These ages are selected because self-esteem and a sense of competence develops in children during mid-childhood, and we clinically begin to see the development of recurrent pain syndromes in mid-childhood as well. Examining the dynamics influencing effective and ineffective pain self management skills will provide information for increasing competence in these children that will provide preliminary information that could be used to develop future interventions for our longitudinal cohort when it reaches mid-childhood.