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Compliance with Prescribed Medication Among Patients Living with Myotonic Dystrophy

Patient compliance with prescribed medicine has been the subject of many studies in common and rare diseases—as many as 50% of patients with chronic diseases do not follow the directions provided by their physicians or pharmacists regarding their medications. Compliance with instructions for prescribed medicines does lead to better health outcomes. Unfortunately, only limited information is currently available regarding which medications myotonic dystrophy (DM) patients take, and there is little understanding of barriers that may prevent better DM patients from complying more diligently with the prescriptions provided by their doctors.

In a recent study by Dr. Richard Moxley, III, MD, and colleagues at the University of Rochester, researchers assessed disease manifestations and adherence to medications for DM1 and DM2 patients. The study, titled “Medication adherence in patients with myotonic dystrophy and facioscapulohumeral muscular dystrophy,” was motivated in part by the fact that DM patients need to take multiple prescriptions to manage disease symptoms associated with a number of different body systems. The study also sought to understand how difficulty in swallowing, limited mobility, and reduced employment may impact DM and facioscapulohumeral muscular dystrophy (FSHD) patient compliance with prescribed medicines.

The researchers surveyed adult DM1 and DM2 patients enrolled in the National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members at the University of Rochester. For both DM1 and DM2, muscle weakness was the symptom that patients most commonly viewed as an unmet treatment need, and for which they wanted new therapies to be developed. Patients also cited the need for treatments to improve mobility and reduce fatigue as high-priority issues in DM1, while DM2 patients reported pain as an unmet need. Many patients surveyed took six or more medications. Improved access to physical therapy, exercise, and mobility devices may help reduce reliance on some medications.

Most DM patients reported a good understanding of both their disease and the reasons that they were taking specific medications. Most participants in the study (93% of DM1, 88% of DM2 patients) reported that cost/insurance coverage was not a barrier to compliance with medications prescribed for their DM symptoms. Side effects of one or more medications were important compliance factors for a significant number of DM patients (35% in DM1, 49% in DM2), and were a factor that led to many patients discontinuing a medication (37% in DM1, 60% in DM2). Patients also identified difficulty in swallowing medicines in tablet or capsule form as a barrier to compliance with prescribed medication (33% in DM1, 21% in DM2).

Dr. Moxley and colleagues concluded that the symptoms of DM did not significantly impair patient adherence to medications prescribed for their multi-system disease. DM1 patients identified more of a need for new medications to manage their disease symptoms than patients with DM2. DM patient compliance with medications was, overall, better than literature reports for other chronic diseases, and participants in the study felt that their medications did not negatively impact their social or work lives. Finally, the authors of the study noted that community pharmacists can be an excellent source of advice when taking multiple medications and in overcoming barriers to compliance. Going forward, there is a need to identity and evaluate the effectiveness of specific medications that are used in DM, and to identify strategies to address barriers such as difficulty in swallowing, to help ensure optimal care for patients living with DM.

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