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The Mitochondrial Disease Patient In A Medical Practice



Roles of the mitochondrial clinic, the PCP, and other providers - a shared "Medical Home."

Patients with mitochondrial disease benefit from the care provided by a metabolic or mitochondrial clinic specialist who is familiar with the overall disease, has experience in managing such patients, and who is able to keep up with new scientific and clinical advances in the field.  Patients also benefit from having a primary care provider who develops a long term relationship with the patient and family, who can advocate for the "whole patient," and who can help the patient and family navigate a confusing course of care when several involved specialists are giving opinions and suggesting recommendations.  Neither the primary care physician nor the mitochondrial disease specialist is suited to function as the sole primary provider for such a patient.  In the most optimal and practical scenario, both function as "core-providers" at the center of a patient's care and communicate freely as situations arise.  This constitutes a "shared Medical Home."

Too often the tendency of patients with (especially complex) chronic diseases is to call on the metabolic or mitochondrial specialist as one would the primary care provider.  While this approach might get the needed answer, it is often a mistake.  Excluding the PCP distances his/her perspective; over the long term, the patient misses out on having a most important trusted advocate and advisor involved in his/her care.  Furthermore, specialty offices are not set up to provide all aspects of care and specialty clinicians not trained to fill this role (especially given the severe shortage of metabolic/mitochondrial clinicians).  As a result, when the PCP role is weakened, it is too often the patient or parent who fills the vacuum and assumes the primary care role.  Not only is this scenario inappropriate and burdensome, it creates a situation in which the patient or parent becomes the primary source of information and the carrier of medical recommendations.  This can lead to errors in care, and also puts the patient and/or parent at risk for accusations of over-vigilance and Munchausen-by-proxy syndrome.

Because of the complexity of mitochondrial disease, it is not uncommon that patients have multiple clinicians involved in their care.  It is important that specialists maintain open lines of communication with the core clinicians (and any other relevant involved physician).  When a patient's course becomes more unstable or symptoms become more severe, correspondence by phone or electronic mail may be needed to make sure the necessary interventions occur and allow the patient's care to progress more smoothly.

Finally, the medical care that occurs in the doctor's office can only be considered part of a patient's overall health management.  Recommendations are of limited benefit if there is no supporting documentation to gain insurance approval for consultations, procedures, or medications, authorization for social security, support for accommodations in the classroom or workplace, and so on.  These interventions can increase significantly a patient's productivity and enhance his/her quality of life.  However, this kind of correspondence is time-consuming and represents "free-care" since it brings in no revenue.  The responsibility of this burden needs to be shared among the patient's core-providers.  To simplify and ease this burden, a number of formatted letters are included in this manual that can be adapted to a patient's individual needs.



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