People who are diagnosed with multiple sclerosis (MS) often suffer from a wide range of co-occurring symptoms, such as pain, fatigue, and depressed mood. These symptoms can be distressing and disruptive to a person's life. For instance, pain, fatigue, and depression are associated with poorer health, functioning, and quality of life. Current recommendations indicate that people with MS should receive behavioral health care aimed at encouraging symptom self-management in addition to medical management and other therapies. Symptom self-management is the use of behavioral strategies, like relaxation techniques, healthy sleep behaviors, and pacing of activities to conserve energy, to manage either the intensity or impact of their symptoms. Research has shown that behavioral health care for symptom self-management in MS is helpful in terms of improving the impact of symptoms on quality of life and functioning. Unfortunately, most people with MS do not have access to behavioral health care aimed at improving the ability of people to manage their symptoms. This type of specialty care is usually available only to the small proportion of patients who receive care at a subset of specialty MS centers. Currently, in other clinical populations, behavioral health care interventions are being moved to web-based platforms. Web-based self-management programs can be used to move proven interventions from the clinic to the World Wide Web, thereby improving the reach of behavioral health interventions into more of the population to "meet patients where they are." Currently, there are a number of existing websites for MS that focus on helping people monitor their symptoms or find outside resources to help them manage symptoms. At this time, there is no web program that is based on the latest research and that is designed to help people gain new skills to manage their symptoms.
The main goal of this project is to improve management of pain, fatigue, and depressed mood in those with MS through development of a web-based program ("MSGuide") that provides education, guidance, and skill-building exercises that are specifically tailored for people with MS. This web program will be based on the latest research about what we know are helpful skills for managing MS symptoms. We have assembled a team of psychologists who have expertise in either developing symptom self-management interventions specifically for MS and or in creating web-based self-management programs to develop and test MSGuide. The first 9 months of the project will be spent developing the MSGuide website; during this development phase, a group of five people with MS ("stakeholders") will provide feedback and input to the researchers about how to make the website more accessible and helpful to those with MS. After MSGuide is created, the last 9 months of the project will be spent studying the program in a small group of 20 patients with MS to see whether there is any preliminary evidence that it is helpful in terms of improving the intensity or impact of pain, fatigue, and/or depressed symptoms in those with MS.
MSGuide will be designed to provide helpful self-management skills for any person with MS who has problems with pain, fatigue, and/or depressed mood. In MS, rates of fatigue are about 80%, pain occurs in about 55% of people, and depression rates are much higher than in the general population. Given the high rates of all three of these symptoms in MS, MSGuide is relevant to most people with the condition. The proposed project will have immediate and significant impact on MS patient care in terms of providing accessible, freely available, evidence-based symptom self-management care to anyone with access to an internet-connected device. For the vast majority of individuals with MS, who do not have access to this type of behavioral health care, this web-based intervention may constitute their first access to helpful education, support, and skill training that mimics the treatment content they would get in a behavioral health setting. |