Self-Management in Neurological Disorders: Systematic Review of the Literature and Potential Interventions in Multiple Sclerosis Care
Rae-Grant, Alex D., Turner, Aaron P., Sloan, Alicia, Miller, Deborah, Hunziker, James, Haselkorn, Jodie K., Journal of Rehabilitation Research & Development
Multiple sclerosis (MS) is a degenerative disorder of the central nervous system affecting as many as 350,000 persons in the United States . Its presentation varies, but typically includes both acute exacerbations and remissions as well as chronic progression of disability over time. It is associated with heterogeneous symptoms that include, but are not limited to, sensory and motor loss, fatigue, difficulties with balance and sexual functioning, pain, cognitive impairment, and depression [2-5]. MS is typically diagnosed in patients between the ages of 20 and 40 and is associated with a relatively normal lifespan. As a result, individuals often face the challenge of a prolonged course of illness .
Providing care for chronic neurological diseases such as MS occurs in a framework much different from the treatment of acute episodic diseases for several reasons--persons with MS have an ongoing disorder that requires monitoring and management, and health services delivery is often provided by multiple providers and in different healthcare settings. Care may not focus on urgent issues as much as on preparation, planning, and maintenance to avoid the development of urgent issues. It is important that individuals with MS understand their disorder so that they take charge of as many aspects of managing MS and its associated impairments as possible .
The Chronic Care Model (CCM) is a frequently cited methodology used to frame disease care in a measurable, iteratively modifiable setting that can be applied to multiple disease states . The CCM is premised on the concept that the processes healthcare providers use for acute care are poorly designed for use with chronic illnesses . This model is divided into various elements designed to assess all aspects of care and provide decision support tools and self-assessment strategies for healthcare teams [9-10]. The CCM has helped reframe the concept of chronic disease management from a healthcare provider-focused endeavor to a systems-based activity. A significant component of the CCM is a person who is active and informed about his or her health condition and is able to use self-management strategies.
For many chronic conditions, individuals and their caregivers either provide substantial portions of their own care or could do so if their healthcare team provided them with an organized self-management framework that encouraged and supported participation . In diabetic management, diet, exercise, glucose measurement, weight monitoring, and medication administration are influenced, and in many instances effectively controlled, by patients. The CCM defines self-management support as collaboratively helping patients and families acquire the skills and confidence to manage their chronic illness, providing self-management tools, and routinely assessing problems and accomplishments . Data from multiple studies show that measures of disease treatment improve as self-management efficacy improves . Components of care such as medication compliance, diet, exercise, avoidance of negative behaviors have been shown to improve in chronic disease with effective self-management strategies [13-14]. Recent models of healthcare emphasize systematic approaches to care change. Bergeson and Dean note the importance of self-management support and the lack of effectiveness of education without a concurrent emphasis on building confidence and skills .
MS is a lifelong neurological disorder that affects persons during their peak work and reproductive years . As in many other chronic diseases, individuals require ongoing care coordination, including medication, disease and symptom management, and education as well as strategies for addressing acute exacerbations. Multiple issues that emerge during the course of MS and cross specialty lines demand active participation by the person and his or her family or other caregivers . …