WEB-BASED SELF-MANAGEMENT OF CHRONIC PAIN IN PARKINSONS DISEASE -
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.
