One of the highlights at the “Comprehensive Care in MS and Symptom Management” session of the Consortium of Multiple Sclerosis Centers (CMSC) 2016 Annual Meeting, was an attempt to address the exclusion of patients with multiple sclerosis (MS) from the design and delivery of healthcare aimed at this very group. Understanding patient perspectives and priorities of people living with MS would allow care models that meet the needs of this group.
The CMSC meeting, held June 1-4 in National Harbor, Maryland, is a highlight in the field of MS research and care, allowing clinicians, researchers and other interest groups to discuss how to best advance care practices and research.
The study, “Optimizing Multiple Sclerosis Health Care: Health Care Priorities of Americans with Multiple Sclerosis,” was performed by University of Kentucky researchers in a multistage project sponsored by a Health Care Delivery and Policy Research grant from the National Multiple Sclerosis Society.
The research involved a thorough review of published literature, a clinical survey, use of national focus groups consisting of members of the National MS Society, and a large national survey of adults living with MS. To get access to patient’s perspectives, the research team partnered with the National MS Society and the NARCOMS patient registry.
Researchers sought to identify the priorities and preferences of MS healthcare consumers, and to offer care providers this information in an attempt to promote the development of healthcare models taking into account patient preferences. One goal of the project was to increase the participation of MS care consumers in this process, as this is believed to improve health outcomes in addition to optimizing care.
The team identified four priority areas important in building patient-centered healthcare. The communication between healthcare providers and patients was evaluated using a tool specifically developed for the study. Findings of patients’ communication-centered priorities included the provider’s cultural competence, healthcare accessibility, and communication about complementary and alternative therapies.
Another area of importance to patients was related to aspects of healthcare and treatment information, including the nature, quality, utility, timing, and delivery mechanisms of such information. Accessibility and coordination of care that takes into account patient’s perspectives of location, scheduling, and after-hours care availability was also sought by patients who wanted to have an influence over modes of care access and delivery, as well as access to different types of healthcare providers.
Finally, the study explored the relationships between MS care priorities or experiences and patient characteristics.
In conclusion, the research team believes that a better understanding of MS patients’ perspectives and priorities can help care models to be developed more specifically and focused for the needs of these patients.