Disparities exist in the international management of multiple sclerosis (MS). For example, when stratified by income, only high-income countries have a high rate of availability of all ...disease-modifying therapies (DMTs); as income decreases, the availability of DMTs declines rapidly, such that even upper-middle-income countries commonly only have access to first-line therapies but not the newer, potentially more potent agents, and low-income countries have no access to DMTs.1 As newer DMTs associated with greater risk of toxicity become more available, providers in those countries are playing catch-up to the international community in providing guideline-level MS care.2 This adds to the challenge already described by providers where advanced MS treatments are available: it is difficult to remain current on important domains related to DMT prescription, including selecting the correct DMT for a specific patient's characteristics, safety data, and monitoring guidelines, resulting in a call for targeted continuing medical education.3 Taken together, it is in the interest of the international MS community to have providers with more experience using these DMTs spread the knowledge they have gleaned to providers in countries where these same treatments are emerging. Our videoconference-based education and case consultation program can efficiently meet this need.
Evidence-based pharmacological and behavioral interventions are often underutilized or inaccessible to persons with multiple sclerosis (MS) who have chronic pain and/or depression. Collaborative care ...is an evidence-based patient-centered, integrated, system-level approach to improving the quality and outcomes of depression care. We describe the development of and randomized controlled trial testing a novel intervention, MS Care, which uses a collaborative care model to improve the care of depression and chronic pain in a MS specialty care setting.
We describe a 16-week randomized controlled trial comparing the MS Care collaborative care intervention to usual care in an outpatient MS specialty center. Eligible participants with chronic pain of at least moderate intensity (≥3/10) and/or major depressive disorder are randomly assigned to MS Care or usual care. MS Care utilizes a care manager to implement and coordinate guideline-based medical and behavioral treatments with the patient, clinic providers, and pain/depression treatment experts. We will compare outcomes at post-treatment and 6-month follow up.
We hypothesize that participants randomly assigned to MS Care will demonstrate significantly greater control of both pain and depression at post-treatment (primary endpoint) relative to those assigned to usual care. Secondary analyses will examine quality of care, patient satisfaction, adherence to MS care, and quality of life. Study findings will aid patients, clinicians, healthcare system leaders, and policy makers in making decisions about effective care for pain and depression in MS healthcare systems. (PCORI- IH-1304-6379; clinicaltrials.gov: NCT02137044).
This trial is registered at ClinicalTrials.gov, protocol NCT02137044.
Project ECHO (Extension for Community Healthcare Outcomes) represents a novel approach to addressing disparities in multiple sclerosis (MS) care. A primary mechanism of the program is the use of case ...consultations to rapidly transfer knowledge from content experts to community providers who care for individuals with MS.
MS Project ECHO was pilot tested as a weekly 60-minute videoconference delivered to 24 clinicians across 13 practice sites over 41 weeks. Participants completed a variety of measures related to their experience in the program and answered qualitative questions via exit interview. We report on the responses to exit interview questions related to the case consultation component of MS Project ECHO.
Participant responses regarding case consultations generated four themes: 1) improved confidence among participants in the existing treatment decision, 2) direct change in the care of the patient provided by the participant, 3) changed practice habits for all of the participant's patients with MS, and 4) increased perception that patients had confidence in the participant as an MS care provider.
Participant responses support MS Project ECHO as a program that may directly and indirectly affect the way providers deliver MS care in underserved areas. Further research is needed to examine the resulting effect on patient outcomes.
Research on pregnancy for women with multiple sclerosis (MS) primarily focuses on medical aspects of pregnancy, and personal perspectives are often ignored. This paper explores pregnancy in women ...with MS by reporting on fertility, pregnancies, family planning, and identifying where they get information about pregnancy and MS. Data from 391 women with MS who responded to a paper and pencil survey are presented using descriptive statistics. Over half of the sample had children, and 14.2 % of the sample became pregnant after their MS diagnosis. Many of these women did not discuss pregnancy or breastfeeding with their physicians or healthcare providers. One-third of women reported that their first pregnancy after their MS diagnosis changed their attitude about future pregnancies. Finally, the most common source of information about MS and pregnancy was specialists (i.e. neurologists or MS physicians). The results of this study can inform individuals who work with women with MS on how to improve services and communication with their patients of childbearing age who may be concerned about pregnancy.
Abstract
Background:
Multiple sclerosis (MS) is associated with a substantial economic burden resulting from direct medical costs associated with health and disability-related resource utilization ...and indirect costs relating to reduced productivity. However, reduced health-related quality of life (HR-QOL) may be associated with additional costs, often termed 'intangible costs,' that should be considered as part of the economic burden from the societal or patient perspectives.
Objectives:
To review the contribution of intangible costs to the overall economic burden of MS.
Methods:
Medline was searched through March 2010 for relevant articles that included the terms 'multiple sclerosis' in combination with 'intangible costs,' 'QALY,' 'quality-adjusted life year,' 'willingness-to-pay,' and 'WTP.' Other than the restriction that the articles were published in English, there were no other exclusionary criteria for the search. Identified references were hand-searched to determine if intangible costs were estimated.
Results:
Thirteen studies across ten countries were identified that estimated intangible costs based on the number of quality-adjusted life-years (QALYs) lost due to a reduction in HR-QOL multiplied by accepted willingness-to-pay (WTP) thresholds. Although absolute costs varied depending on thresholds used and year of evaluation, the intangible costs accounted for 17.5-47.8% of total costs of MS. Furthermore, evidence suggested intangible costs are positively correlated with worsening disability. The largest increase in intangible costs occurred at the transition between mild and moderate disability. However, since no value has been established as being acceptable to pay for a QALY, a limitation of these studies was their dependence on the definition of the WTP threshold.
Conclusions:
Intangible costs substantially add to the economic burden of MS. There is not only a need to further characterize these costs and incorporate them into economic studies, but also to determine how these costs can be reduced through appropriate management strategies.
Aggressive immunosuppression followed by autologous hematopoietic stem cell transplantation (aHSCT) can be an effective treatment for severe multiple sclerosis (MS), but not all stages of disease may ...benefit equally. The case of a 49-year-old woman with advanced secondary-progressive MS whose clinical course was not improved by aHSCT and who seven years after transplantation succumbed to complications of severe MS disease-related disability is presented. Autopsy findings of ongoing neurodegeneration despite only rare infiltrating T-lymphocytes illustrate that late MS disease may not represent a suitable disease stage for aHSCT.
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