Myasthenia Gravis: A Manual for the Health Care Provider
James F. Howard
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The mission statement of the Myasthenia Gravis Foundation of America (MGFA) is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis (MG) and closely related disorders and to improve their lives through programs of patient services, public information, medical research, professional education, advocacy and patient care. Since, at present, there is no cure, there must be a consistent, interdisciplinary effort by all allied health professionals to appropriately evaluate and treat patients with MG.
This handbook is written as an aide to all healthcare personnel who are involved in the care and management of patients with myasthenia gravis. Sections are included to assist the physician community in their evaluation, diagnosis and management of MG. Every effort has been made to outline the varying opinion of the experts and it is recognized that more than one approach may be appropriate. The over riding principle that patients with MG are not in a vacuum and must be evaluated and treated based on their entire health care picture is necessary. The perspective of an anesthesiologist and dentist are also included because their interaction with the myasthenic patient is unique and special considerations are necessary.
Nursing plays a critical role in the day-to-day management of the hospitalized and community patient. A team approach to the patient will inevitably result in the optimal care of the myasthenic patient.
The patient with a chronic illness faces numerous obstacles in their every day life. The clinical social worker is invaluable to the patient (and the healthcare team) in navigating the bureaucracy and hurdles as it pertains to insurance, financial assistance and psychosocial well being.
The allied health evaluations should be objective and quantitative for each individual patient and should assist the physician in diagnosis, classification and effectiveness of medical treatment. These evaluations should enable the allied health professionals to determine a functional baseline and an appropriate exercise prescription. The patient will then be able to utilize a program of moderate-intensity exercise to improve his/her level of fitness, which will diminish the effect of exacerbations. Through the use of self-monitored exercise, each patient will have an improved sense of his/her own functional limitations and will be able to supply the physician with more detailed information about current treatment efficacy.
The pharmacist plays an important role in the safety and education of the myasthenic patient. Today’s healthcare system often depends upon the specialist who has little knowledge of other disciplines. The ever growing list of drug-drug interactions that may be harmful to the patient places the pharmacist in a central position to be the watchdog and keep the patient out of harms way.
This coordinated, interdisciplinary approach will promote increased quality of life for those affected by myasthenia gravis.
The following guidelines are a culmination of over 35 years of clinical practice in university-based teaching hospitals. It is the authors’ hope that these guidelines will challenge all allied health clinicians who work with patients diagnosed with myasthenia gravis to critically evaluate their current practice with respect to these patients. We submit that incorporation of these recommendations into the evaluation and treatment repertoire of allied health professionals will enhance the quality of care provided to people who have myasthenia gravis.