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）开发远程医疗工具，通过低成本、移动和无线技术促进健康并将高危青年与卫生系统联系起来。镰状细胞病（SCD）是一种遗传性疾病，通过使红细胞形成镰状，阻断血液流动，并在生理或社会心理压力时引起巨大的疼痛，从而影响红细胞。患有SCD的青少年有假性成瘾的风险。这种现象发生在疼痛控制不佳时，他们试图获得药物被临床医生认为是药物寻求。由于SCD主要影响少数民族，许多人认为大部分患有SCD的青少年是上瘾的，而实际上他们的疼痛是基于生理的。大多数年轻人在家里控制疼痛发作，并推迟寻求治疗，直到疼痛变得无法忍受。对疼痛治疗的延迟导致应对能力差、功能干扰和睡眠障碍。最终，这些年轻人面临着学业成绩差、生活质量下降和其他可能影响整体健康的负面结果的风险。有效应对青少年SCD疼痛需要不同的策略，鼓励他们及时与医疗保健系统联系。远程保健和互联网技术的进步是创新方法，可以改善获得知识渊博的保健提供者的机会，并通过无线通信改善疼痛管理。手持式无线技术和基于网络的应用程序可能会最大限度地减少限制获得及时缓解疼痛的障碍。我们建议测试一种创新的无线疼痛干预方案在镰状细胞病中的有效性，该方案利用1)手机/PDA和一个有疼痛问题的程序（e-Ouch）；2)连接到包括教育材料、心理学家和执业护士在内的资源的网络链接；3)使用手机/PDA的同伴社会支持网络。我们将比较两组患有SCD的青少年，并将他们随机分配到：1)标准治疗，2)标准治疗+无线疼痛干预方案。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至17岁）将被要求在他们感到疼痛的日子里每天完成三次纸质日记。心理学家/青少年咨询师将在迎新会上解释“应对痛苦：帮助的策略”小册子中的内容。这本14页的小册子简要总结了帮助应对疼痛的策略（深呼吸，肌肉放松，关于疼痛和五感的信息，意象），分散注意力的技巧，积极的自我陈述和积极的思考，触发分析和自我监控，行为契约，情感-疼痛联系的信息，何时需要咨询的信息，以及资源/阅读清单。干预组的年轻人将指示使用手机/掌上电脑在e-Ouch 1)回答问题(c)电子日记一天三次在天有疼痛,2)与资源研究网站,3)与心理学家/青年顾问能够提供支持和信息根据需要应对的策略,根据需要4)与护士谁能够做一个评估,监控、规定和/或咨询其他医疗保健提供者（儿科疼痛专家、血液学家），以及5)使用手机/PDA与其他SCD青少年联系，特别是将通过手机/PDA连接的友谊网络。我们假设参加无线疼痛干预计划（WPIP）的青少年SCD患者会有1)增加疼痛应对能力；2)减少疼痛对日常活动的干扰；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，以及这种疼痛干预计划是否会推广到其他需要疼痛管理的儿童疾病。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)一个手机/ pda，上面有一个程序（e-Ouch），上面有关于疼痛的问题；2)连接到包括教育材料、心理学家和执业护士在内的资源的网络链接；3)使用手机/掌上电脑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.