Receiving the diagnosis of motor neurone disease

Abstract

ABSTRACT It has been asserted that the impact of illness can best be understood in terms of the perception of the patient (identity of the illness, cause, time‐line, consequence and cure) rather than the disability resulting from the disease. This study was set up to examine patients' perceptions of illness before and after diagnosis and to assess, firstly, whether their perceptions determined the emotional impact of the diagnosis and, secondly, the coping strategies employed to cope with the diagnosis. This was a longitudinal study of 38 patients with suspected motor neurone disease (MND), seen before and after diagnosis in three centres in the UK, using standardised measures and theoretically derived questions. The standardised measures included disability rating scales and tests of emotional outcome. Patients' perceptions: identity. The mean number of symptoms did not alter before and after diagnosis. About 20% of patients identified their illness as MND before going to hospital for investigations; their anxiety and depression decreased after diagnosis, presumably as a result of being ‘prepared’. As expected, significantly more subjects (64%, Sign test, p = 0.0018) gave the MND label after diagnosis. For these people, anxiety and depression increased after diagnosis. Most saw something positive in getting the diagnosis. Patients who did not have the correct label before diagnosis became significantly more disabled over time. Patients' perceptions: cause. About half the subjects attributed their MND to a cause, even though there is no accepted cause of MND. They had significantly higher wellbeing scores; of these about 40% attributed it to their own behaviour and were found to be significantly less disabled (t = 2.84, df = 16, p = 0.012). Patients' perceptions: time‐line and cure. Before the diagnosis, only 24% of patients expected a cure, 24% expected to be better, and 26% expected to be worse. After diagnosis, 20% still expected a cure but none expected to be better. No significant relationship was found with severity of disability. Patients' perceptions: consequences. At both times, patients ranked their illness as being serious. This was not related to the severity of disability. In this study most of the subjects took coping action. This was associated with a reduction in anxiety and depression. It is important to note that seeking alternative remedies was associated with anxiety. This study has important implications for managing patients with MND.