MS Care Study
MS Care is a collaborative care intervention designed to enhance the existing comprehensive care found in MS specialty centers. The target of MS Care is improved quality of chronic pain and /or depression management through the enhanced collaboration and additional expertise provided by the MS Care Manager. The MS Care management model is built around accountability: allowing for active tracking of patient symptoms and clinical outcomes, and encouraging continuous outreach to ensure that no one falls through the cracks.
The MS Care study is designed to answer the following patient-centered outcomes research question: Does MS Care, compared to usual care, improve pain, depression, and care quality outcomes in patients with MS?
The MS Care Study is a randomized controlled comparative effectiveness trial comparing the MS Care approach to depression and pain care to usual care.
ms, Chronic pain, and major depressive disorder
Chronic pain and major depressive disorder (MDD) are two of the most prevalent problems experienced by MS patients. The lifetime prevalence of depressive disorders in MS is two to three times higher than the general population. (2,3) Depression and chronic pain are often under-identified and under-treated in MS patients, (11) despite the availability of effective treatments. (5,6,12,13)
Among people with MS, over 50% of people experience moderate or severe chronic pain,4-6 and 20% to 25% experience clinically significant levels of both depression and chronic pain. (7) Both are associated with poorer MS outcomes, functioning and health-related quality of life, and greater healthcare utilization.(5,8-10) An estimated one-half to two-thirds of people with MS and MDD are sub-optimally treated.(14-17)
Systematic screening alone has not consistently led to improved treatment. (13) Patient-preferred pain treatments and evidence-based non-pharmacologic pain management strategies are seldom used. (18) As one of our stakeholders said, "I know from my doctor there are treatments for pain and mood, but it is hard to get connected to them in a way that works for me." The high prevalence, adverse outcomes, and under-treatment of pain and depression in MS patients point to the need for new approaches that improve access to effective treatments.
MS Care was built upon the substantial evidence for the effectiveness of collaborative care in treating depression in primary care (34-37) and evidenced-based interventions for pain and depression in MS. (16,38-40) Studies of collaborative care targeting pain and depression in other medical populations, including primary care (21,41) and cancer,(42) also informed the intervention. Collaborative care provides comprehensive pain and depression management that is patient-centered and thus intentionally flexible. This model offers a systematic and integrated approach to improving the delivery and utilization of effective treatments for chronic pain and depression in patients with MS.
MS Care Results
At the end of the treatment phase, participants in MS Care, compared to those getting usual care, had:
- Significantly better control of their pain and depressive symptoms: 57.6% of those in MS Care had good pain and depression control, as compared to 31.7% in usual care
- Pain severity
- Pain interference
- Depression severity
- MS Care successfully integrated a collaborative care model of integrated care within the UW MS Center.
- 195 participants were enrolled in the MS Care study
- Of participants randomized to either MS Care or usual care, 98% were retained in the study
- MS Care actively engaged stakeholders throughout the study via multiple means, including regular meetings, focus groups, 1:1 consultation, and online surveys.
- The engagement contributed to the study's successful integration, enrollment, and retention
Stakeholder engagement is essential to the MS Care study and our ongoing research program. The Patient Centered Outcomes Research Institute (PCORI) defines stakeholder engagement as “the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process—from topic selection through design and conduct of research to dissemination of results”. (2) Stakeholder engagement is based on the principle that research is most useful when individuals and communities affected by the condition being studied actively participate in the research process.
In the MS Care study, stakeholders included individuals with MS, clinic providers, hospital administrators, and representatives from community advocacy groups, including the National MS Society. Stakeholders were involved in:
- shaping the study design and intervention to meet the needs of patients and providers
- identifying important outcomes
- trouble-shooting problems that came up during the study
- monitoring progress
- interpreting and disseminating study results