Web-based Self-Management of Chronic Pain in Parkinsons Disease

描述（由申请人提供）：帕金森病（PD）是一种进行性、不可治愈的神经退行性疾病，在美国影响超过150万人;或每100名60岁以上的人中就有一人。最近对PD的非运动因素的关注加深了对这种情况下残疾的理解;并强调了慢性疼痛是痛苦和残疾的重要来源，在临床实践中严重认识不足和治疗不足。PD患者首先被视为内科患者;因此，慢性疼痛和相关的心理社会困扰等重要问题没有得到适当的临床治疗。因此，迫切需要开发非医学治疗方法，以更有效地满足PD患者的疼痛管理需求。PD疼痛的性质与其他类型的慢性疼痛非常不同。与肌肉僵硬、肌张力障碍、不良体位、静坐不能以及在某些情况下中枢性疼痛综合征相关的疼痛，都导致性质非常不同的疼痛。此外，PD疼痛通常是恒定的，而不是偶发的，并且通常作为用于治疗疾病的药物的副作用而发生。由于这些原因，PD疼痛导致独特的心理社会后果。PD疼痛需要与其他类型的慢性疼痛不同的自我管理策略。也有一个巨大的需要，教育和支持PD护理人员有关疼痛管理。鉴于PD的性质，护理人员的负担比其他类型的疼痛高得多。对照顾者的期望可能会威胁到照顾者和患者的身心健康，因为两者的生活质量和抑郁程度密切相关。此外，很少有时间花在教育医疗提供者有关管理PD疼痛和如何应对PD疼痛的心理社会后果。许多提供者不知道行为疗法治疗疼痛的可用性和有效性。拟议的计划将利用现有的在线疼痛管理平台，创建一个独特的创新干预措施，以支持积极参与疼痛的自我管理，这是根据PD患者的独特需求而设计的。第一阶段的一个主要重点是对无障碍要求进行深入的需求评估，以了解PD如何影响计算机使用，确定需要进行哪些技术和设计修改，以有效满足人口的需求。第一阶段编制的技术发展计划将概述如何满足所需的无障碍需求。该计划将重点关注PD疼痛体验的许多独特方面，这些方面与其他类型的慢性疼痛有显着不同。该方案的另一个关键创新将是制定护理人员组成部分。这是干预平台所缺少的一个重要组成部分。它将大大扩大现有干预措施的范围和影响，带来显著的附加值。通过实施“互动对话”对教学法进行重大创新，将改善干预措施的实施，并显著提高用户参与度。在第一阶段，我们将开发和测试该计划的原型，以帮助确定在第二阶段开发该计划的完整版本的可行性。 公共卫生相关性：疼痛是帕金森氏病（PD）患者痛苦和残疾的主要来源，在临床实践中，帕金森氏病（PD）的认识和治疗都非常不足。自我管理技能培训可以帮助PD患者管理疼痛和疼痛症状，过上更健康和积极的生活，并促进更大的自我效能和幸福感。拟议的干预措施提供了临床验证的技能培训，以支持积极的疼痛自我管理行为，并教授技能，以支持患者和提供者之间的良好沟通。该干预措施将成为PD患者的一个完全独特和创新的资源，并将改变治疗PD疼痛的临床护理模式。

DESCRIPTION (provided by applicant): Parkinson's Disease (PD) is a progressive, incurable neurodegenerative disease that affects more than 1.5 million people in the United States; or one out of every 100 people over the age of 60. Recent focus on the non-motor elements of PD has deepened the understanding of disability in this condition; and highlights the fact that chronic pain is an important source of distress and disability which is dramatically under-recognized and under-treated in clinical practice. People with PD are treated first and foremost as medical patients; therefore, important issues such as chronic pain and related psychosocial distress do not get appropriate clinical. Consequently, there is a critical need to develop non-medical treatments to meet the pain management needs of people with PD more effectively. The nature of PD pain is very different from the other types of chronic pain. Pain associated with muscle stiffness, dystonia, poor body posture, akathisia, and in some cases central pain syndrome, all result in pain that is qualitatively very different. In addition, PD pain is typically constant rather than episodic, and commonly occurs as a side effect of medications used to treat the disease. For these reasons PD pain results in unique psycho-social consequences. Pain in PD requires different self-management strategies than other types of chronic pain. There is also an enormous need to educate and support PD caregivers about pain management. Given the nature of PD, there is a much higher level of caregiver burden than with other types of pain. Expectations placed on the caregiver can threaten the physical and mental health of the caregiver and patient, as quality of life and level of depression of both are closely linked. Further, little time is spent educating medical providers about managing PD pain and how to respond to the psychosocial consequences of PD pain. Many providers are unaware of the availability and efficacy of behavioral adjuncts to treating pain. The proposed program will leverage an existing online pain management platform to create a unique and innovative intervention to support active engagement in the self-management of pain that is designed with the unique needs of the PD patient in mind. A major focus of Phase I will be to perform an in-depth needs assessment of accessibility requirements to understand how PD impacts computer use determine what technical and design modifications to will be required to effectively meet the needs of the population. The technical development plan prepared in Phase I will outline how the required accessibility needs will be met. The program will focus on the many unique aspects of the PD pain experience, which are significantly different than for other types of chronic pain. Another key innovation of the program will be the development of a caregiver component. It is an essential component that is missing from the intervention platform. It will greatly broaden the scope and reach of the existing intervention, bringing significant added value. Significant innovation of the instructional pedagogy through the implementation of "interactive conversation" will improve the delivery of the intervention, and significantly increase user engagement. In Phase I we will develop and test a prototype of the program to help determine the feasibility of developing a full version of the program in Phase II. PUBLIC HEALTH RELEVANCE: Pain is a major source of distress and disability for people with Parkinson's disease (PD) which is extremely under- recognized and under-treated in clinical practice. Self-management skills training can help people with PD manage pain and pain symptoms, lead more healthy and active lives, and promote greater self-efficacy and well-being. The proposed intervention provides clinically validated skills training to support active pain self-management behaviors, and teaches skills to support good communication between patient and provider. The intervention will be a wholly unique and innovative resource for people with PD, and will alter the clinical care paradigm for treating pain in PD.