Publications (2)6.49 Total impact
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Article: Identifying poor adaptation to a new diagnosis of motor neuron disease: A pilot study into the value of an early patient-led interview.
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ABSTRACT: This pilot study explored whether clinicians can identify patients who may not be coping with a diagnosis of MND early in the disease course by using patient-led interviews rather than psychological testing. Consecutive, newly diagnosed MND patients underwent a semi-structured interview six and 18 weeks after diagnosis, and completed SEIQoL-DW, ALSFRS-R, MND Coping Scale, MND Social Withdrawal Scale, SF 36 v2 and HAD. Three physicians independently used a list of factors from the literature associated with coping with a diagnosis of MND, and overall impression to assign patients from interview transcripts to groups of copers and non-copers. Ten of 13 recruited patients were categorized unanimously using the first interview alone. Four patients were categorized as non-copers. These showed significantly higher scores for depression, anxiety and social withdrawal and significantly lower scores for coping and mental composite scores on the SF 36 v2. Our pilot study suggests it is possible for experienced clinicians to identify patients who may struggle to cope with a diagnosis of MND early by patient-led interview alone. This provides some evidence for the therapeutic potential of the early follow-up appointment interview with a senior doctor soon after diagnosis, advocated by current British guidelines.Amyotrophic Lateral Sclerosis 04/2009; 11(1-2):104-9. · 3.40 Impact Factor -
Article: How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice.
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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: official publication of the World Federation of Neurology Research Group on Motor Neuron Diseases 10/2006; 7(3):161-6. · 3.09 Impact Factor
