How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines‐based practice

Abstract

Management during the diagnostic phase of MND is considered an important influence on the patient's further disease course. Guidelines for the management of MND have been developed, but little is known on how recommended practices influence patients' experience of a new diagnosis of MND. We undertook an interview‐based study exploring issues surrounding the diagnosis of MND in a sample of consecutive patients recently diagnosed at a neurosciences centre. Data were analysed with Interpretative Phenomenological Analysis (IPA). Thirteen patients were recruited to the study. The major themes identified in descending order were ‘Family/carers’, ‘Communication of the diagnosis’, ‘Reaction to the diagnosis’, ‘Physical difficulties’, ‘Time before diagnosis’, ‘Information’, ‘Future’, ‘Coping with the diagnosis’ and ‘Formal support’. Communication was perceived satisfactory if handled according to existing guidelines. Physical difficulties impacted considerably on patients' lives. Delays in the diagnostic process appeared in various interviews. Five patients were avoiding information following the diagnosis. Some patients commented on an increasing number of uncoordinated services becoming involved after their diagnosis. This study supports the current international guidelines for MND care around diagnosis from the patients' perspective and underlines the importance of a multi‐disciplinary, coordinated approach for patients with MND from diagnosis onwards.

• Amyotrophic lateral sclerosis
• diagnosis
• quality of life
• patient care