Abstract
An anonymous postal survey of cardiologists, diabetologists, gynecologists, and ophthalmologists in Osaka was performed to assess the medical care-seeking behaviors of and problems associated with the medical management of patients with myotonic dystrophy (DM). The questionnaires were sent to 927 cardiologists, 357 diabetologists, 882 gynecologists, and 915 ophthalmologists. Of these, 172 cardiologists, 85 diabetologists, 220 gynecologists, and 154 ophthalmologists responded. More than 30% of responders had provided care to DM patients, and approximately 10% had experience diagnosing DM patients. These facts suggest that DM patients receive medical care from various specialists due to complications involving multiple systems and some of them visit other specialists prior to neurologists. Some patients were diagnosed after perinatal or perioperative difficulties. Therefore, it seems important to improve the ability of physicians to identify DM patients. Because specialists with experience diagnosing DM paid more attention to the characteristic features of DM, such as grip myotonia and hatchet face, a simple screening test may be useful for detecting DM. Some responders pointed out the negative attitude of DM patients toward medical care and the lack of neurologists for consultation as problems in the medical management of DM patients. Cooperation among neurologists and other specialists and education of DM patients are important to improve the medical management of DM patients.
