CMT in Australia: A survey of cost-utility, wellbeing and management

CMT is the most common form of inherited neuropathy. Although CMT is more common than diseases such as the muscular dystrophies, it does not share the level of community awareness. Under the Health Chronic Disease Prevention and Services Improvement Fund, the Australian Department of Health commissioned a report to investigate the direct and indirect financial cost to government of CMT. The primary aim of the report is to make recommendations to better streamline government resources as well as: 1. Maximise the wellbeing and quality of life of individuals affected by CMT from initial diagnosis to end of life; 2. Reduce the pressure on the health and hospital system including aged care; and 3. Support evidence‐based best practice in the prevention, detection, treatment and management of CMT. The following priority areas have been identified to translate principles into practice: 1. Prevention across the continuum; 2. Early detection and appropriate treatment; 3. Integration and continuity of prevention and care; 4. Self‐management. Preliminary data has identified that difficulties associated with awareness have a direct relation to cost to government. The report is currently in data collection phase. Primary data collection is by way of two methods: 1. A comprehensive written question survey targeting adult Australians with; and 2. Focus groups targeting people with CMT as well as family members of people with CMT. Groups will be conducted in every state of Australia as well as the Australian Capital Territory. While health authorities can access data on the cost of other neurological disorders such as the muscular dystrophies and Parkinson disease, no such data exists for CMT. Unlike other diseases which result in short‐to‐medium life span for sufferers, people with CMT generally live a normal lifespan. This makes the cost of CMT to government considerably higher. Neurological disorders accounted for 12% of the total burden of disease and injury in Australia in 2003. Given the non‐fatal aspect of CMT coupled with advances in diagnosis, it is probable that the cost of CMT to government is likely to rapidly increase in the near future.