Communicating the diagnosis of motor neurone disease

Abstract

Communication of the diagnosis of motor neurone disease (MND) is a particularly difficult task for doctors in view of the poor prognosis and the lack of significant treatment. This study examined patients' views of being given the diagnosis and of how it was communicated. Fifty people who had been diagnosed with MND more than six months previously were interviewed about their experience of the diagnosis. The majority reported positive aspects of being told, especially having a label for their condition. The most frequently mentioned critical aspect of how they were told was the directness and clarity with which they were given the information. Patients were more critical if the diagnosis was worse than expected (as it was for most patients) and more satisfied if they felt they had been able to ask questions. There was no evidence that unsatisfactory communications were associated with later mood disturbance. A longitudinal study is recommended to overcome limitations in this cross-sectional design.