Home-Based Self-Management of Chronic Pain in Adults with Sickle Cell Disease: Applying a Biopsychosocial and Technological Approach

项目摘要/摘要。在患有镰状细胞病(SCD)的成年人中，慢性疼痛与 相当高的发病率、死亡率和医疗保健利用率。慢性疼痛在SCD中的发生率很高， 随着受影响的人进入青壮年，这一数字可能会增加。然而，患有SCD的黑人成年人 在获得包括行为疼痛在内的慢性疼痛的全面护理方面经常遇到挑战 管理策略。因此，慢性疼痛通常用阿片类药物治疗，但单用阿片类药物往往 次优的，与不良的健康结果相关，并且它们的使用受到访问限制的限制，因为 目前阿片类药物在美国流行。因此，替代的、基于证据的、非药理学的 需要解决慢性疼痛的心理社会方面的选择，并支持疼痛自我管理 家庭环境，以减轻SCD的负担，提高受影响个人的生活质量。 虚拟现实(VR)是一种及时而创新的工具，它为以下个人带来了痛苦的减轻 经历慢性疼痛情况，如复杂的区域疼痛综合征、纤维肌痛和慢性 偏头痛。虽然VR应用程序通常主要用于诊所或医院环境中的急性疼痛， 成本的降低和技术的进步为其在国内的长期使用创造了潜力。在……里面 此外，移动和游戏技术在年轻人中的流行表明，VR是一种很有前途的 交付平台。因此，可以利用VR来实现基于家庭的慢性疼痛自我管理 成人SCD。到目前为止，还没有关于VR干预慢性疼痛的研究发表 成年SCD患者的家庭环境管理。本项目将评估AppliedVR的EaseVRx-a 多模式、基于技能、为期8周、虚拟现实、家庭干预--自我管理的探索性试验 60名患有SCD的黑人青年(年龄18-40岁)的慢性疼痛。EaseVRx体验基于 与疼痛教育、疼痛心理学、生物反馈相关的循证疼痛管理方法 训练、放松和分散注意力。类似于面对面综合疼痛管理计划，EaseVRx 提供治疗信息，支持参与者学习认知和行为自我管理 技能，以及对疼痛路径的再培训。单点、混合、探索性、平行组随机对照研究 在成人SCD患者中进行EaseVRx与主动对照的对照试验(RCT)将进行：1) 确定EaseVRx用于慢性疼痛自我管理的可行性；2)初步评估 EaseVRx对疼痛和疼痛相关结果的有效性；以及3)评估EaseVRx如何针对 目标受众主要由黑人个人组成。数据将从电子病历中获得， 经过验证的调查、痛苦日记、设备使用统计数据以及定性的个人访谈或焦点小组 会话。该项目与NINR的优先事项保持一致。研究结果将用于开发和测试 在一个更大的随机对照试验中，为患有SCD的成年人量身定做、基于家庭的疼痛自我管理干预。

PROJECT SUMMARY/ABSTRACT. In adults with sickle cell disease (SCD), chronic pain is associated with substantial morbidity, mortality, and healthcare utilization. The incidence of chronic pain in SCD is high and is likely to increase as affected individuals transition through young adulthood. However, Black adults with SCD often encounter challenges in obtaining comprehensive care for chronic pain that includes behavioral pain management strategies. As a result, chronic pain is typically managed with opioids but opioids alone are often suboptimal, are associated with poor health outcomes, and their use is limited by access restrictions due to the current opioid epidemic in the United States. Therefore, alternative, evidence-based, non-pharmacological options are needed to address the psychosocial aspects of chronic pain and support pain self-management in the home setting in order to decrease the burden of SCD and improve the quality of life of affected individuals. Virtual reality (VR) is a timely and innovative tool that has resulted in pain reduction for individuals who experience chronic pain conditions, such as complex regional pain syndrome, fibromyalgia, and chronic migraines. While VR applications have typically been used in a clinic or hospital setting primarily for acute pain, cost reductions and advances in the technology have created the potential for its long-term use at home. In addition, the popularity of mobile and gaming technology among young adults suggests that VR is a promising delivery platform. Therefore, VR may be utilized to implement home-based chronic pain self-management for adults with SCD. To date, there have been no published studies of VR interventions for chronic pain management in the home setting for adults with SCD. This project will evaluate AppliedVR's EaseVRx – a multi-modal, skills-based, 8-week, VR, home intervention – in an exploratory trial for self-management of chronic pain among 60 Black, young adults (ages 18–40) with SCD. EaseVRx experiences are based on evidence-based pain management approaches related to pain education, pain psychology, biofeedback training, relaxation, and distraction. Similar to in-person integrative pain management programs, EaseVRx provides therapeutic information to support participants in learning cognitive and behavior self-management skills, and retraining the pain pathways. A single-site, mixed-methods, exploratory, parallel-group randomized controlled trial (RCT), of EaseVRx versus active control, among adults with SCD will be conducted to: 1) determine the feasibility of using EaseVRx for self-management of chronic pain; 2) assess the preliminary efficacy of EaseVRx on pain and pain-related outcomes; and 3) assess how EaseVRx can be tailored for a target audience that mostly consists of Black individuals. Data will be obtained from electronic medical records, validated surveys, a pain dairy, device usage statistics, and qualitative individual interviews or focus group sessions. This project aligns with the priorities of NINR. Study findings will be used to develop and test a tailored, home-based, pain self-management intervention for adults with SCD in a larger RCT.