Optimizing Multiple Sclerosis Health Care: Health Care Priorities of Americans with Multiple Sclerosis

Background: This presentation describes a patient-based, participatory action research project aimed at identifying the MS care priorities of Americans with MS. This research, funded through a Health Care Delivery and Policy Research grant from the National Multiple Sclerosis Society (NMSS), addresses the exclusion of MS consumers from the design and delivery of MS health care, and the limited current understanding of the health care priorities and preferences of MS health care consumers.

Objectives: The objectives in this research included: (1) to identify the priorities and preferences of MS care consumers, (2) to provide MS health care providers with information that will promote the design and development of individualized care models that capitalize on patient priorities and preferences, and (3) to increase consumer participation in order to promote positive health outcomes and optimize MS care.

Methods: This is a multi-stage research project incorporating a comprehensive literature review, clinical survey, national focus groups with NMSS members, and a large national survey of adults with MS, conducted in cooperation with the NMSS and the NARCOMS patient registry.

Results: The results of the national survey are presented in terms of four areas of priorities: 1. Patient-Health Care Provider Communication, based on a health care evaluation instrument that was developed for this study and evaluated for broad clinical use in this research, we will describe MS patients' priorities concerning communication with health care providers, provider cultural competence, health care accessibility, and communication about complementary and alternative therapies; 2. Health Care Information, and patients' preferences related to the quality, nature, usefulness, format, and delivery mechanisms and timing of health and treatment information; 3. Health Care Accessibility and Coordination of Care, including patients' preferences and priorities related to health care coordination, location, scheduling, after-hours care, modes of care access and delivery, and access to different types of providers; and 4. Demographics, Health, and Function, and the relationships between MS care priorities/experiences and patient characteristics.

Conclusions: The findings provide important information for health care professionals across disciplines and inform the development of comprehensive and responsive MS care models. The results highlight areas where people with MS identified the need for greater health care provider attention, including mental health and wellness, effective communication and information dissemination, inclusion of the family and caregivers in care provision and decision making, coordination of care, and communication between health care providers. The results inform the development of individualized health care and tailoring of health interventions.