Wireless Pain Intervention Program for At Risk Youths with Sickle Cell Disease

描述(由申请人提供)：该项目涉及广泛的挑战领域(06)：使能技术和具体的挑战主题(06-MD-101)开发远程保健工具，以促进健康，并通过低成本、移动和无线技术将高危青年连接到卫生系统。镰状细胞病(SCD)是一种遗传性疾病，会影响红细胞，使其形成镰刀状，阻塞血液流动，并在生理或心理压力下造成巨大的疼痛。患有SCD的年轻人有假性成瘾的风险。这种现象发生在疼痛控制不佳时，他们试图获得药物的尝试被临床医生视为寻求药物。由于SCD主要影响少数民族，许多人认为很大一部分患有SCD的年轻人对SCD上瘾，而实际上他们的痛苦是基于生理的。大多数年轻人会在家里忍受痛苦的发作，并推迟寻求治疗，直到疼痛变得无法忍受。疼痛治疗的延误会导致应对能力差、功能障碍和睡眠障碍。最终，这些年轻人面临学业成绩不佳、生活质量下降以及其他可能干扰整体健康的负面后果的风险。有效应对患有SCD疼痛的青少年将需要不同的战略，以鼓励他们及时与医疗保健系统建立联系。远程医疗和互联网技术的进步是创新的方法，可能会改善获得知识丰富的医疗保健提供者的机会，并通过无线通信改善疼痛管理。手持无线技术和基于网络的应用程序可能会将限制及时止痛的障碍降至最低。我们建议测试一种创新的无线疼痛干预计划在镰状细胞疾病中的有效性，该计划利用1)带有关于疼痛问题的程序(e-Ouch)的手机/PDA；2)将连接到包括教育材料、心理学家和护士从业者在内的资源的网络链接；以及3)使用手机/PDA的同行社会支持网络。我们将比较两组患有SCD的青少年，并将他们随机分配到：1)标准护理，2)标准护理+无线疼痛干预计划。测量将在基线时进行，然后在干预后3个月和6个月进行。标准护理组的青少年(8岁至17岁)将被要求在他们疼痛的日子里每天完成三次纸质日记。心理学家/青年辅导员将在迎新会议期间，在一本名为《应对痛苦：帮助你的策略》的小册子中解释内容。这本14页的小册子简短地总结了帮助应对疼痛的策略(深呼吸、肌肉放松、关于疼痛和五官的信息、意象)、分心技巧、积极的自我陈述和积极的思维、触发分析和自我监控、行为契约、关于情绪和疼痛联系的信息、何时需要咨询的信息，以及资源/阅读清单。干预组中的青少年将被指导使用手机/PDA来1)在e-Ouch上回答问题(C)在他们疼痛的日子里每天三次电子日记，2)与研究网站上的资源链接，3)与心理学家/青年顾问联系，他们将能够根据需要提供支持和关于应对策略的信息，4)根据需要与护士从业者联系，他们将能够进行评估、监测、开处方和/或转介其他卫生保健提供者(儿科疼痛专家、血液学家)，5)使用手机/掌上电脑与其他患有SCD的青少年联系，特别是将通过手机/掌上电脑连接的友谊网络。我们假设，参加无线疼痛干预计划(WPIP)的SCD青少年将有1)增加疼痛应对；2)减少日常活动中的疼痛干扰；3)改善睡眠；4)提高生活质量；5)减少与疼痛相关的医疗保健使用。未来的研究将更具体地检查WPIP的成本效益，以及这一疼痛干预计划是否将推广到其他需要疼痛管理的儿童障碍。这项研究将检验无线疼痛干预计划的有效性。该计划将包括1)一个带有关于疼痛问题的程序(e-Ouch)的手机/PDA；2)一个网络链接，将连接到包括教育材料、心理学家和护士从业者在内的资源；以及3)使用手机/PDA的同伴社会支持网络。

DESCRIPTION (provided by applicant): This project addresses the broad challenge area (06): Enabling Technologies and the specific challenge topic (06-MD-101) Development of Telehealth Tools to Promote Health and Connect At-Risk Youth to the Health System via Low-Cost, Mobile, and Wireless Technologies. Sickle cell disease (SCD) is an inherited disorder that affects red blood cells, by causing them to form a sickle shape, blocking blood flow, and causing a tremendous amount of pain in times of physiological or psychosocial stress. Youths with SCD are at risk for pseudoaddiction. This phenomenon occurs when pain is poorly controlled, and their attempts to obtain medications are perceived by clinicians as drug seeking. Because SCD predominantly affects ethnic minorities, many believe that large proportions of youths with SCD are addicted, when in fact their pain is physiologically based. Most youths manage painful episodes at home and delay seeking treatments until pain becomes intolerable. The delay in treatment for pain leads to poor coping, interference with function, and sleep disturbance. Eventually, these youths are at risk for poor academic achievement, decrease in quality of life, and other negative outcomes that may interfere with overall health. Effective coping in youths with SCD pain will require different strategies that would encourage them to connect with the health care system in a timely manner. Advances in telehealth and internet technology are innovative approaches that may improve access to knowledgeable health care providers, and improve pain management through wireless communications. The handheld wireless technology and web-based applications may potentially minimize barriers that limit access to timely pain relief. We propose to test the effectiveness of an innovative wireless pain intervention program in sickle cell disease that utilizes 1) a cell phone/PDA with a program (e-Ouch) that has questions about pain; 2) a web link that will connect to resources including educational materials, a psychologist, and nurse practitioner, and 3) a peer social support network using cell phone/PDA. We will compare two groups of youths with SCD and randomly assign them to: 1) standard care, 2) standard care + wireless pain intervention program. Measurements will occur at baseline, then at 3 and 6 months following intervention. The youths (8 to 17 years old) in the standard care group will be asked to complete the paper diary three times a day on the days that they are having pain. The psychologist/youth counselor will explain the content in a booklet "Coping with Pain: Strategies that Help" during the orientation session. The 14-page booklet is a short summary of strategies that help cope with pain (deep breathing, muscle relaxation, information on pain and the five senses, imagery), distraction techniques, positive self-statements and positive thinking, trigger analyses and self-monitoring, behavioral contracts, information on the emotion-pain connection, information on when counseling is needed, and resource/reading list. The youths in the intervention group will be instructed to use the cell phone/PDA to 1) answer questions on the e-Ouch(c) electronic diary three times a day on the days they are having pain, 2) link with the resources in the study web site, 3) connect with the psychologist/youth counselor who will be able to provide support and information about strategies for coping as needed, 4) connect with the nurse practitioner as needed who will be able to make an assessment, monitor, prescribe, and/or refer to other health care provider (pediatric pain specialist, hematologist), and 5) use the cell phone/PDA to connect with other youths with SCD, particularly the friendship network that will be connected via cell phone/PDA. We hypothesize that youths with SCD who participate in the wireless pain intervention program (WPIP) will have 1) increase pain coping; 2) decrease pain interference with daily activities; 3) improve sleep; 4) increase quality of life; and 5) decrease health care use related to pain. Future studies will more specifically examine the cost effectiveness of the WPIP and whether this pain intervention program will generalize to other childhood disorders that require pain management. The study will examine the effectiveness of the Wireless Pain Intervention Program. The program will consist of 1) a cell phone/PDAs with a program (e-Ouch) that has questions about pain; 2) a web link that will connect to resources including educational materials, a psychologist, and nurse practitioner, and 3) a peer social support network using cell phone/PDAs.