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Quality of life focus group

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Friday, May 13 2016 12:00pm EDT

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Toll-free: 1-866-414-2828
participant code: 017921#

All are welcome!

For help participating if you are deaf or hearing-impared, click here

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What does quality of life mean to you?

One challenge when creating clinical trials for people with mitochondrial disease is the tremendous diversity that exists in our community. Even patients with the same genetic diagnosis may have different symptoms and varying degrees of severity.

Consequently, understanding quality of life from a patient's point of view becomes incredibly important in this context.

Please register for this Friday's very important one-hour telephone focus group. Adult patients, caregivers, and parents of affected children are welcome and encouraged to participate. Share your perspective on issues such as:

  • What defines a "good day" for you or your child?
  • How much do tests and labs change your day-to-day disease management?
  • For you or your child, what makes the greatest difference in your quality of life?
  • How do you personally measure progress year after year? Likewise, how do you personally measure setbacks and disease progression?
  • How much time do you spend managing your disease versus managing aspects of your care  (insurance, appointments, medication refills, etc.)?
  • Outside of family members, who in your community plays the greatest role in helping to improve your or your child's quality of life, and why?

Your participation is important! Without you, the voice of the patients and parents, how can we describe what it means to live with Mito?

This group will be led by Cristy Balcells RN MSN and MaryBeth Hollinger RN MSN and a summary of the discussion will be created and shared (individual responses will remain anonymous).

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