Analyzing Pain Medication Use and Adherence in Patients with Myotonic Dystrophy and Facioscapulohumeral Dystrophy

Objectives: Myotonic dystrophy (DM) and facioscapulohumeral dystrophy (FSHD) are two of the most common muscular dystrophies in adults. It has been reported that patients with these two disorders may suffer from pain and inadequate pain management. The purpose of this study is to analyze the current use of pain medications and develop a survey to assess pain medication use and adherence in this patient population. Methods: Patients registered in the National Registry for DM and FSHD at the University of Rochester were surveyed on pain medication use and the most significant problem of their disease. After analysis of these surveys, an additional survey was created that contained questions specifically on pain medication use, adherence, and general questions about the patients’ pain. Questions for the survey were devised from previous studies on medication adherence, questionnaires on medication adherence and beliefs, and questions from the Brief Pain Inventory. Results: In the first survey, pain medication was used by 34% of the survey respondents (n=519/1527). Specifically, NSAIDs were used by 23.5% and opioids were used by 4% of survey respondents. In a separate survey, pain was reported as the most burdensome problem by 8% of patients (n= 27/355). This was greater than problems related with balance (n=10/355), fatigue (n=20/355), or gastrointestinal distress (n=8/355). Conclusion: Despite the low reported response that pain was the most significant problem associated with their disease, the prevalence of pain medication use indicates that further study into the impact of pain and pain medication use in this patient population is warranted. Specifically, investigating questions about adherence, use, and beliefs toward pain medication will lead to an increased understanding of pain and its treatment in this patient population. This knowledge can lead to the ability of pharmacists to optimize pain management and to reduce adverse reactions to pain medications