Management of Sickle Cell Disease-Related Pain in Children

儿童镰状细胞病相关疼痛的治疗

• 批准号: 8318041
• 负责人: Patricia L Kavanagh
• 金额: $ 13.43万
• 依托单位: BOSTON MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-08-10 至 2016-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8318041
• 关键词: Absence of pain sensation; Accident and Emergency department; Acute; Acute Pain; Adolescent; Adult; Affect; African American; American; Analgesics; Area; Asthma; Biometry; Caregivers; Caring; Child; Child Care; Childhood; Chronic; Chronic Disease; Clinical Practice Guideline; Clinical Research; Complex; Controlled Study; Data; Dose; Emergency Medicine; Event; Frequencies; Funding; Guidelines; Health; Healthcare; Hematology; Hereditary Disease; Hispanics; Home environment; Hour; Instruction; Knowledge; Lead; Learning; Malignant Neoplasms; Methods; Morbidity - disease rate; National Heart, Lung, and Blood Institute; Opioid; Outcome; Pain; Pain intensity; Pain management; Parents; Patients; Pharmaceutical Preparations; Physical Function; Physiology; Prevention; Protocols documentation; Public Health; Publishing; Quality Indicator; Quality of life; Randomized Controlled Trials; Reporting; Research; Research Design; Resolution; Schools; Severities; Sickle Cell Anemia; Stress; Surveys; Symptoms; System; Titrations; Variant; Work; Writing; aged; base; design; experience; health care service utilization; improved; prevent; programs; skills

DESCRIPTION (provided by applicant): Sickle cell disease (SCD) is one of the most common genetic disorders in the US. Pain is the most common cause of acute morbidity in children and adults with SCD. Pain episodes are periodic, self-limited but often excruciating events that can last hours to days, sometimes weeks if inadequately treated. Studies on SCD-related pain have primarily focused on adults, therefore, the National Heart, Lung and Blood Institute identified acute pain management and prevention as a high-priority area for research in children. Most pain episodes are managed at home for children with SCD, yet there are no controlled studies examining the management of pain in this setting. In addition, there is growing evidence that pain is frequently under-treated at home. For more severe pain episodes, patients with SCD often rely on care in the emergency department (ED). Despite published protocols recommending rapid assessment and treatment, children with SCD experience significant delays and variation in the treatment of their pain. From the PI's qualitative work with parents of children with SCD, parents are often overwhelmed by the prospect of managing their child's pain at home. They also report delays in the treatment of their child's SCD- related pain in the ED. Parents believe that the use of an individualized pain plan would improve the caregiver's ability to prevent and manage their child's SCD-related pain. Written, symptom-based, management plans have been proven effective in treating chronic diseases, such as asthma and cancer-related pain. The specific aims of this project are to: 1) Design and conduct a national survey of directors of pediatric SCD or hematology programs and the division chiefs of pediatric emergency medicine to understand if, and how, pain protocols or other methods are used in the home and ED settings for the management of SCD- related pain in children; 2) Convene an expert panel to develop quality indicators for the prevention and management of acute SCD-related pain in children in the home and ED settings using the Modified Delphi method, and to refine an individualized written pain plan for use in children with SCD; and 3) Perform a pilot randomized controlled trial of children with SCD aged 5 to 12 years to evaluate the feasibility and efficacy of using an individualized written pain plan in the home and ED settings. In addition to acquiring quantitative research skills through the proposed research plan, the candidate will gain knowledge in the management of children with SCD and pain; receive instruction on the cultural aspects of health care, advanced biostatistics, and study design through additional coursework; and learn about systems approaches to caring for children with chronic illness. Information and experiences gained from this project will be used to design a multicenter randomized controlled trial to examine the effect of an individualized pain plan on the health care utilization, physical function, and quality of life of children with SCD.

描述（由申请人提供）：镰状细胞病（SCD）是美国最常见的遗传性疾病之一。疼痛是儿童和成人SCD急性发病的最常见原因。疼痛发作是周期性的，自限性的，但往往是痛苦的事件，可以持续数小时到数天，如果治疗不当，有时会持续数周。scd相关疼痛的研究主要集中在成人，因此，国家心脏，肺和血液研究所确定急性疼痛的管理和预防作为儿童研究的一个高度优先的领域。对于患有SCD的儿童，大多数疼痛发作是在家中处理的，但是没有对照研究检查在这种情况下疼痛的处理。此外，越来越多的证据表明，疼痛在家中往往得不到充分治疗。对于更严重的疼痛发作，SCD患者通常依赖于急诊科（ED）的护理。尽管已发表的协议建议快速评估和治疗，但SCD儿童在治疗疼痛方面存在明显的延迟和差异。从PI与SCD患儿父母的定性工作来看，家长们常常被在家管理孩子痛苦的前景所压倒。他们还报告说，在急诊科，他们孩子的SCD相关疼痛的治疗出现了延误。家长们认为，使用个性化的疼痛计划将提高照顾者预防和管理孩子SCD相关疼痛的能力。书面的、基于症状的管理计划已被证明对治疗慢性疾病有效，如哮喘和癌症相关的疼痛。该项目的具体目标是：1)设计并开展一项针对儿科SCD或血液学项目主任和儿科急诊医学部门主任的全国性调查，以了解是否以及如何在家庭和急诊科环境中使用疼痛方案或其他方法来管理儿童SCD相关疼痛；2)召集专家小组，采用改进的德尔菲法，制定家庭和ED环境中儿童急性SCD相关疼痛预防和管理的质量指标，并完善适用于SCD儿童的个性化书面疼痛计划；3)对5 - 12岁的SCD儿童进行随机对照试验，以评估在家庭和ED环境中使用个性化书面疼痛计划的可行性和有效性。除了通过拟议的研究计划获得定量研究技能外，候选人还将获得管理SCD和疼痛儿童的知识；通过额外的课程，接受有关卫生保健、高级生物统计学和研究设计的文化方面的指导；并了解照顾慢性疾病儿童的系统方法。从该项目中获得的信息和经验将用于设计一项多中心随机对照试验，以检查个体化疼痛计划对SCD儿童的医疗保健利用、身体功能和生活质量的影响。