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Perspectives from Adolescents with Secondary Mitochondrial Disease

Collier, Sarah E
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1491317275179069

Abstract Details

2017, MS, University of Cincinnati, Medicine: Genetic Counseling.
Mitochondrial diseases are a diverse group of disorders that can affect multiple high energy body systems, creating many chronic health issues. There are two types of mitochondrial disease: primary and secondary. Primary mitochondrial disease includes the identification of a genetic mutation responsible for the patient’s symptoms. Secondary mitochondrial disease lacks an identifiable genetic mutation. The overall incidence of mitochondrial disease is approximately1 in 4,300. Mitochondrial diseases can be difficult to diagnose and treat due to various and often non-specific symptomology. Previous research has focused on perspectives of caregivers to patients with mitochondrial disease and only one study examined viewpoints of adults with primary mitochondrial diseases. Currently, no formal definition or diagnostic criteria exist for secondary mitochondrial disease. For this study, the research committee created the criteria to define secondary mitochondrial disease. The aim of this study was to explore the experiences of young adults (15-25 years old) with secondary mitochondrial disease in the hope that their experiences will help better inform patient care in this area. Using Moustakas’s 1994 protocol for phenomenology, semi-structured qualitative interviews were conducted to explore the experiences of young adults with secondary mitochondrial disease. Ten individuals with secondary mitochondrial disease were interviewed. The major themes identified were: changes to the way of life, planning for the future, and interactions with the medical community. This study identified a need for the mitochondrial disease medical community to define and create diagnostic criteria for secondary mitochondrial disease. Participants also described emotional and medical consequences of providers misdiagnosing patients with psychological disorders, such as conversion disorder or Munchausen syndrome-by-proxy, rather than mitochondrial disease. The findings support the benefits of a positive working alliance between the patient and the health care practitioners.
Carrie Atzinger, M.S. C.G.C. (Committee Chair)
Taosheng Huang, MD Ph.D. (Committee Member)
Jodie Johnson, M.S. C.G.C. (Committee Member)
42 p.
Genetics
secondary mitochondrial disease; mitochondrial disease; qualitative interviews; phenomenology; patient perspective; physician-patient relationship

Recommended Citations

Citations

  • Collier, S. E. (2017). Perspectives from Adolescents with Secondary Mitochondrial Disease [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1491317275179069

    APA Style (7th edition)

  • Collier, Sarah. Perspectives from Adolescents with Secondary Mitochondrial Disease. 2017. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1491317275179069.

    MLA Style (8th edition)

  • Collier, Sarah. "Perspectives from Adolescents with Secondary Mitochondrial Disease." Master's thesis, University of Cincinnati, 2017. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1491317275179069

    Chicago Manual of Style (17th edition)

ucin1491317275179069
241
© 2017, all rights reserved.
This open access ETD is published by University of Cincinnati and OhioLINK.