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: 8711542
• 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/8711542
• 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SCD儿童和成人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，可以持续数小时至数天，有时几周，如果治疗不当。SCD相关疼痛的研究主要集中在成人，因此，国家心脏，肺和血液研究所将急性疼痛管理和预防确定为儿童研究的高度优先领域。 对于SCD儿童，大多数疼痛发作在家中进行管理，但没有对照研究检查这种情况下的疼痛管理。此外，越来越多的证据表明，疼痛经常在家中治疗不足。对于更严重的疼痛发作，SCD患者通常依赖急诊科（艾德）的护理。尽管已发表的方案建议快速评估和治疗，但患有SCD的儿童在疼痛治疗中经历了显着的延迟和变化。 从PI对SCD患儿家长的定性研究来看，家长们经常被在家里管理孩子疼痛的前景所压倒。他们还报告了ED中对儿童SCD相关疼痛的治疗延迟。父母认为，使用个性化疼痛计划将提高护理人员预防和管理儿童SCD相关疼痛的能力。书面的，基于健康的管理计划已被证明在治疗慢性疾病，如哮喘和癌症相关的疼痛有效。 该项目的具体目标是：1）设计并实施一项针对儿科SCD或血液学项目主任和儿科急诊科主任的全国性调查，以了解是否以及如何在家庭和艾德环境中使用疼痛协议或其他方法来管理儿童SCD相关疼痛; 2）召集专家小组，使用改良德尔菲法制定预防和管理家庭和艾德环境中儿童急性SCD相关疼痛的质量指标，并完善用于SCD儿童的个性化书面疼痛计划; 3）对5至12岁的SCD儿童进行试点随机对照试验，以评估在家庭和艾德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SCD和疼痛儿童管理方面的知识;通过额外的课程，接受有关医疗保健，高级生物统计学和研究设计的文化方面的指导;并了解照顾慢性病儿童的系统方法。从这个项目中获得的信息和经验将被用来设计一个多中心的随机对照试验，以检查一个个性化的疼痛计划对SCD儿童的医疗保健利用，身体功能和生活质量的影响。