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Are the Clinician and Patient a Good Match?

Different clinicians run their practices differently.  Some have more support staff available that can help the clinician accommodate the many and frequent needs of a family with a mitochondrial patient.  Some are primarily community-based practices with few or infrequent connections with a wide array of specialists.  Some are very high-volume practices that would be very overwhelmed by a case that is so chronic and medically intensive.

Patients with mitochondrial disease and their families do not generally expect to find primary care providers who are familiar with mitochondrial disease.  More likely is that they find a practice in which they are the "only family" (although there may well be other undiagnosed cases).  It is important that the patient/family and the provider discuss the following issues to determine whether or not the practice can accommodate these needs:

  1. That the physician is interested in learning about a complicated new disease in order to play a more effective role in the patient's care;
  2. That the physician feels comfortable asking questions and calling when necessary whoever is overseeing the patient's mitochondrial disease management;
  3. That the physician feels comfortable acting as an advocate for the patient as medical providers and insurers are not familiar with the disease and as a result patients meet many challenges to their care.

Patients do not need to surround themselves by experts who know mitochondrial disease but rather clinicians who are conscientious and not put off by the challenge of getting involved.

It is most important for a clinician to be honest in figuring out whether or not his/her personality and/or practice are suited for this kind of patient and their needs.  If not, it saves enormous time and energy to determine early on that this is not "a good match" and frees up the patient and family to consider other options for their care.

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