This study aimed to investigate the type and funding of pharmacological and non-pharmacological medications taken by people diagnosed with myotonic dystrophy (DM) in NZ, and to explore the factors associated with medication use.

Data on 213 individuals with a confirmed diagnosis of myotonic dystrophy identified through a nationwide population-based prevalence study, MDPrev, were extracted. Socio-demographic information, details of funded, non-funded prescription medications they were taking or not taking as well as use of herbal or vitamin supplements, nutritional supplements and complementary therapies were analysed. Chi square and t-tests were used to determine any differences between those who were taking medication and those who weren’t to identify any associations between demographic characteristics and medication use. Correlation analysis was then performed and a regression model to determine predictors of medication use. The findings revealed that medication use amongst individuals with myotonic dystrophy was high, with a number of associated comorbidities and symptoms being treated simultaneously. There were 120 different prescription medicines identified and grouped according to the WHO ATC/DDD classification. Some participants reported taking up to 13 medications with the majority taking up to four different medications. Use of some medications, for example modafinil, was low in NZ, potentially due to this being an unfunded medication in NZ. Modafinil is recommended for managing symptoms common in myotonic dystrophy, such as excessive daytime sleepiness. The study suggests therefore that funding of medicines that have strong evidence for in international literature, could make a difference in management of the symptoms associated with this condition more effectively in NZ. Use of herbal, nutritional and complementary therapies was diverse and low. The study highlighted that access to neurology services was a major predictor of medication use. There are only 8 centres in NZ with neurology clinics, access to neurology services needs to be considered for individuals with myotonic dystrophy who are not within easy reach of one of these centres, or by funding and making available more clinics throughout the country. Given the high use and frequency of medications used by people with myotonic dystrophy, increased access medication-review services through community pharmacies could assist in the effective medication use and management of symptoms. In alignment with current literature, this study also suggests that a multidisciplinary approach to management of a complex and multi-systemic chronic progressive condition like myotonic dystrophy may be more effective, and perhaps setting up of neuromuscular clinics that involve a wide range of specialists such as cardiology and gastroenterology, is likely to make significant difference to prescribing and use of appropriate medication.