Assessment of Depression Onset and Prevalence in Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSDH)
Prevalence and onset of depression in myotonic dystrophy and facioscapulohumeral dystrophy patients Purpose: Myotonic dystrophy (DM) and facioscapulohumeral dystrophy (FSHD) are the most common types of muscle dystrophies, categorized by both muscle dysfunction and multi-system manifestations including depression and anxiety. The purpose of this research was to examine the onset of depression in relation to DM or FSHD diagnosis. Methods: An online Qualtrics survey was sent to members of the National Registry for DM and FSHD Patients and Family Members at the University of Rochester. The 65-question survey was anonymous and voluntary and included questions on demographic information, muscular dystrophy and depression diagnoses and disease management. To assess potential symptoms of depression, the Emotional Distress-Depression-Short Form and the Global Mental Health Form from the NIH-supported Patient Reported Outcome Measurement Information System (PROMIS) were also included. Surveys were collected between May and August of 2017 and analyzed in February 2019. This study was approved by the St. John Fisher College Institutional Review Board and Registry Scientific Advisory Committee. Results: Of the 1205 surveys sent out, 466 individual Registry members responded. The survey respondents were 47% male (n=218/463) and 53% (n=245/463) female. The results from the PROMIS forms demonstrate the DM and FSHD patients have a higher prevalence of depression symptoms with a T-score of 54.3 in comparison to the general population (T-score 50). A total of 34% (n=142/420) of all of the respondents were diagnosed with depression and within each disease state, 30% of DM 1 (n=39/130), 36% of DM 2 (n=27/74) and 35% of FSHD (n=76/216) had been diagnosed. In survey respondents who were not formally diagnosed with depression, 35% (n=33/94) of DM 1, 25% (n=10/50) of DM 2 and 31% (n=45/144) of FSHD believed they might have depression. Of the DM 1 and 2 respondents who were formally diagnosed with depression, 59% (n=39/66) were diagnosed with depression before their muscular dystrophy diagnosis. In contrast, of FSHD survey respondents who were formally diagnosed with depression, 67% of patients were diagnosed with depression after their muscular dystrophy diagnosis. This comparison was significant with a P value of <0.05. Conclusions: Patients with DM 1, DM 2 and FSHD experience depression symptoms at a slightly higher prevalence than the general population. Patients with DM 1 or DM 2 were more likely to be diagnosed with depression before their muscular dystrophy diagnosis and those with FSHD were more likely to be diagnosed with depression after their muscular dystrophy diagnosis. Additional research needs to be done to determine the relationship between disease onset, incidence of depression and disease manifestations.
Parkhill, Amy and Cusack, Elizabeth, "Assessment of Depression Onset and Prevalence in Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSDH)" (2019). Pharmacy Faculty/Staff Publications. Paper 511.
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