P.18.10 A qualitative approach to exploring myotonic dystrophy type 1: Truths and misinformation

Abstract

Myotonic dystrophy type 1 (DM1) impacts on the daily lives of affected individuals and their families. Understanding individual perceptions of their disease is critical to ensuring appropriate information, education and counseling regarding DM1. We analyzed participants’ knowledge of myotonic dystrophy, which may be useful for efforts to bridge health literacy gaps and optimize quality of life. Nine participants (five males) with mild to moderate disease took part in a qualitative study using Photovoice to explore the lived experience of DM1. The audio-recorded transcripts of participant and focus group interviews were analyzed using methods from Phenomenology and Photovoice. We identified six themes, including one relating to disease knowledge we coded as DM1: Truths and Misinformation. NVIVO qualitative research software was used to organize and manage the data. Four categories were identified from the broader theme of DM1: Truths and Misinformation – Genetics and Me, The Physical and Emotional Cost of DM1, Managing My DM1, and Patients as Educators. All nine participants discussed DM1 specifics with varying degrees of certainty, however all also had opinions that reflected misperception on the part of self, friends, family, family physicians, specialists and others. Each of the four categories will be discussed and illustrated with representative quotes. This study revealed that DM1 participants had a solid foundation of core knowledge with respect to their disease and its implications. However, each participant held as fact, fragments of misinformation that shaped decision-making and points to a clear need for strategies to mitigate variable interpretation of health information. This study also highlights the need for broader awareness about DM1 in health care providers and the public to remove barriers and facilitate successful integration of individuals with DM1 into social, occupational and family environments.