Veterans Health Administration Multiple Sclerosis Centers of Excellence: Clinical care, education, informatics, and research

Abstract

In January 2002, the Department of Veterans Affairs (VA) established two Multiple Sclerosis (MS) Centers of Excellence (MSCoEs) to improve the care of veterans with MS. Since then, MSCoE East, based at the Baltimore VA Medical Center (VAMC), and MSCoE West, based at the Seattle and Portland VAMCs, have initiated a variety of clinical care, educational, and research initiatives (see www.va.gov/ms for more information). The MSCoEs are pleased to present this special issue of the Journal of Rehabilitation Research and Development (JRRD) devoted to MS. MS is an important neurologic disease among veterans. Up to 24,000 veterans with MS receive care through the Veterans Health Administration (VHA) and over 6,000 are service-connected for MS [1]. The total cost to the VHA for providing care and disability benefits to veterans with MS is considerable. A 1993 study reported average costs, including VA benefits and home healthcare, of $35,000 per patient each year [2]. Importantly, cost of care rose significantly with increasing disability. With the advent of disease-modifying agents (DMAs) for MS, we expect that early treatment will decrease the disability associated with the disease and thereby enhance the health and health-related quality of life (QOL) of veterans with MS. Focusing on the healthcare needs of veterans with MS is important because veterans with MS differ significantly from nonveterans with MS. Compared with nonveterans, veterans with MS are more likely to be male and older and have a higher disability burden and progressive form of MS [3]. Research studies of nonveteran populations may not reflect the differing needs of veterans with MS. This special issue of JRRD contains articles that (1) address an array of issues relevant to the care of veterans with MS and (2) reflect some of the initiatives being promoted by the two MSCoEs. Both MSCoEs embrace the chronic-care model first described by Wagner et al. [4-5]. Hatzakis et al. discuss implementation of a chronic-care model in MS through use of a data repository, state-of-the-art informatics, existing clinical-care guidelines, educated providers and veterans, and continuous quality improvement through a network of facilities. The authors describe the key elements of an informatics infrastructure in support of an MS chronic-care model, including a VA National MS Data Repository that the MSCoEs have jointly built to serve clinical, research, and administrative goals. Culpepper et al. report on the early challenges in identifying veterans with MS based on existing electronic data sources. They verified, using electronic medical record review, that an algorithmic approach can be used to identify a cohort that most likely has MS. Ensuring that healthcare providers are adequately educated about how to care for veterans with MS is also central to the chronic-care model. Turner and associates describe an educational needs assessment of VA and non-VA providers with a special interest in MS. This survey indicates that VA providers have similar self-identified educational needs as their community-based colleagues. Areas of particular need included education on management of cognitive impairment, fatigue, depression, spasticity, sexual dysfunction, and use of DMAs and development of an approach to the diagnosis of MS. This survey will provide the basis for the development of education programs by the MSCoEs that target VA MS healthcare providers. Treatment of MS in the VA is challenging. Guarnaccia and colleagues report on their assessment of 204 veterans with MS undergoing treatment with a DMA at multiple VAMCs. This study documents that veterans starting DMAs differ significantly demographically from those participating in the initial clinical trials of these agents. For instance, compared with those in the pivotal trial that led to Food and Drug Administration approval for interferon [beta]-1b, veterans starting DMAs were much more likely to be male, older by a mean of 6 years, more disabled as measured by the Expanded Disability Status Scale, and non-Caucasian (21% vs 7%). …