| **PRINCIPAL CARE IN MULTIPLE SCLEROSISA MODEL FORAUTOIMMUNE DISEASE AND WOMEN**

**June Halper, MSN, RN.CSPresident, The Consortium of Multiple Sclerosis CentersExecutive Director, Gimbel MS Center**

Multiple sclerosis (MS) is the most common major neurologicdisorder affecting young adults. There are probably 350,000 individuals in the UnitedStates with this disease. The majority of those affected are women, with a female-maleratio of 2:1—a finding typical of most autoimmune diseases *(*Rice GPA, Ebers,GC. Management of multiple sclerosis in women. *The Female Patient*.*1995*;20:19*.)*.

Despite exhaustive research, remarkably little is knownabout the cause of MS. There appear to be three main factors—an abnormal immuneresponse to an unidentified self-antigen within the central nervous system (CNS), agenetic predisposition, and an environmental trigger. The study of immunologicabnormalities in MS patients has provided little insight into the cause of the disease *(Ibid.)*.The natural history of MS is relatively well known. The clinical course can follow arelapsing-remitting pattern, a progressive-relapsing course; or a chronic progressive orsecondary progressive course *(Ibid.)*. The factors that predispose one to a pooroutcome are not well understood. Thus, MS presents the healthcare community with a widevariety of complex issues and challenges and calls for creative and innovative solutions.

Principal care is an emerging model of care in chronicillness. From a patient perspective, it has been suggested that the definition ofprincipal care would be determined by whom the patient would classify as their personalcare provider or whom they would call first for a new symptom that they did not understand(Halper J, Burks, JS. Care patterns in multiple sclerosis: Principal care, comprehensiveteam care, consortium care*. NeuroRehabilitation.*4(2):70.). Using the model ofmultiple sclerosis, the neurologist or an MS center are often the first line of inquirywhen patients have difficulties. In other autoimmune disease (lupus, scleroderma,rheumatoid arthritis, etc.), principal care providers would be those healthcareprofessionals with the greatest understanding of the needs of people with the disease aswell as those of care partners or family members. The principal care provider can insurethat the continuum of care is unbroken through a pattern of referrals to appropriatespecialists when indicated (i.e., gynecologists, orthopedists). In MS, while someneurologists are not comfortable with principal care and remain consultants, a growingnumber are assuming this role. It is suggested that this model can be applied to otherautoimmune diseases and their specialist care providers can fill the principal care rolefor diseases such as rheumatoid arthritis, lupus erythematosus, and scleroderma.

The new healthcare reform climate creates an idealsituation for a specialist to serve as a principal care provider for autoimmune diseases.The need is twofold: (1) primary care physicians do not have the resources to meetpatient’s comprehensive needs; and (2) since the specialist’s role may decreaseunder managed care, added time may permit increased involvement in the comprehensivemanagement of chronic disease.

The principal care concept is relevant to other healthcareprofessionals. The role of nurses, rehabilitation professionals, social workers, andpsychologists cannot be overemphasized.

Healthcare in chronic illness often reflects the prioritiesof disease-specific needs and related physical, social, emotional, and spiritualwell-being. Principal care provides the dynamic milieu in which these needs can be met. 

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