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Coordinating Care for Mito Patients: An impossible dream?


Too many doctors? Coordinated care for the patient with a mitochondrial disorder.


Based on the MitoAction international teleconference meeting held June 6, 2008

Listen to the audio recording here


MitoAction welcomed Mark Korson, MD, Chief of the Metabolic Service at the Floating Hospital for Children at Tufts Medical Center in Boston to speak about a topic that affects many families and patients with mitochondrial disease: managing multiple specialists.

The diagnosis of a mitochondrial disorder inherently means that there is a likelihood that multiple organ systems may be affected as a result of the disease. To compound that fundamental confusion, we all agree that there is a lack of awareness about Mito. One might even go so far as to say that there are misconceptions about mitochondrial disorders (i.e., the disease only affects children, or that a patient must be neurologically devastated in order to have Mito). At best the healthcare system is not very supportive to patients who live with chronic diseases, and at worst it may be devastating or obstructive. The responsibility of coordinating multiple specialists becomes a challenge and frequently is delegated to the patient or caregiver themselves.

Every organ in the body is dependent on energy to function properly, and each organ must function well in order for the body to be healthy. For the person with an energy metabolism disorder, i.e. mitochondrial disease, every affected organ system equals a different subspecialist. A person could easily become lost in the system, bouncing from cardiologist to endocrinologist to neurologist to the ER while navigating tests and follow-ups and further tests before starting the cycle over once more. At some point, it helps to identify one healthcare provider that takes on the role of "manager". But who might that person be?

It helps to examine three different providers often involved in the care of the person with Mito. The primary care provider (pediatrician or internist) (PCP), the Mito specialist (a metabolic physician, neurologist, geneticist, etc.) and the subspecialist (cardiology, gastroenterology, etc.) each have a unique role, and the challenge is choreographing care amongst them all.

While the mitochondrial disease specialist is often sought as the cornerstone of the mito patient's care, there are real disadvantages to that approach. Let's examine each and the advantages and disadvantages of using each provider as the "manager" for the patient.

Primary Care Providers -
-more available than mito clinics (usually).
-number of PCPs is growing.
-some want to be more involved, and competence increases over time.
-lack of understanding about Mito.
-may not grasp the big picture
-have busy practices - unable or unwilling to take on a complex and involved patient
-thought to be the "medical home" but most are not good at managing chronic disease.
-don't have practice experience at managing some of the Mito issues through their office (but could be taught).

Mitochondrial disease clinics -
-Good awareness and understanding of Mito.
-know the big picture, so can help prioritize.
-familiar and experienced with chronic disease.
-useful and practical experience, given the constraints of the health care system.
-usually not local, often far away.
-not as available.
-number of MDs/clinics not growing, and may actually shrink.

This brings challenges to the patient as a result. First, MDs are often busy and don't talk to each other. Further, clinic notes often lag behind what happening in real-time with the patient. Finally, as a result, the patient or parent becomes the primary provider of information, and this potentially puts them in danger as well as adds to an existing burden of actually living with the disease and the symptoms!

Based on his experience with nearly 1000 Mito patients, Dr. Korson offers some tangible suggestions for addressing the problem of "too many doctors".

1. Assess your PCP; being knowledgeable (i.e. having prior experience with mitochondrial disorders) is less important than being conscientious and open to communicate.

2. Propose that the PCP and mito clinic share the title of "medical home." They need to be able to communicate.

3. Find a helpful contact person in each clinic setting, and shower with praise; always show your appreciation.

4. Parents and patients need to be good advocates. Be assertive, but always respectful, hence you may actually be obstructive to optimal communication.

5. Keep a medical record of notes, according to doctor.

6. Carry with you important and recent documents, or carry a clinic visit book with summary impressions.

7. Keep a brief letter summarizing the medical problems, the diagnosis, and how it was made (check out ).

8. Have the PCP or specialist call the Mito specialist while you are in the office for important plan changes.

9. PRIORITIZE! Identify the most important needs and give those priority, otherwise understanding the "big picture" becomes even more overwhelming.

To some, the idea of coordinated care may seem impossible. The needs and numbers of the Mito patient population is quickly outgrowing the existing medical networks which patients rely on in order to navigate their complex health needs. However, communication, planning, advocacy and awareness are at the root of the solution, and as patients and parents, we can begin to improve those areas today.

Copyright 2008, Cristy Balcells, RN MSN, Executive Director



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mitoscottie's picture



Just wanted to say that Dr Korson's presentation was really worthwhile for we patients and caregivers. Cristy, your summary is an excellent reflection of what was presented. Thank you.

Jean Shepherd

British Columbia, Canada