Myotonic dystrophy (DM1) is an autosomal dominant, progressive, and multisystem condition that impacts affected individuals physically, socially, and emotionally. Understanding individuals’ perceptions of their disease is critical to ensuring appropriate information, education, and counseling.
We conducted a content analysis of findings from a larger study that used a novel, qualitative research approach called photovoice to explore nine patients’ experiences of living with DM1. Participants took pictures that illustrated barriers or facilitators to living with DM1; their photographs then formed the basis of semistructured interviews. Transcripts were analyzed and, among themes, we identified one titled “DM1 truths and misinformation” that described participants’ disease knowledge. Analysis revealed four categories within this broader theme: “the physical and emotional cost of DM1,” “managing my DM1,” “genetics and me” and “patients as advocates and educators.”
Findings showed that DM1 participants had good core knowledge with respect to their disease and its implications. However, each participant held as fact fragments of misinformation that shaped decision-making and pointed to a clear need for strategies to mitigate variable interpretation of health information.
We conclude that there is a need for increased education and awareness about symptoms, genetic information and treatment strategies for patients, their family members, and health care providers.