Linked Life Data

16963405

Source:http://linkedlifedata.com/resource/pubmed/id/16963405

Statements in which the resource exists as a subject.
PredicateObject
rdf:type
lifeskim:mentions
pubmed:issue
3
pubmed:dateCreated
2006-9-11
pubmed:abstractText
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.
pubmed:language
eng
pubmed:journal
pubmed:citationSubset
IM
pubmed:status
MEDLINE
pubmed:month
Sep
pubmed:issn
1748-2968
pubmed:author
pubmed:issnType
Print
pubmed:volume
7
pubmed:owner
NLM
pubmed:authorsComplete
Y
pubmed:pagination
161-6
pubmed:dateRevised
2009-11-17
pubmed:meshHeading
pubmed:year
2006
pubmed:articleTitle
How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice.
pubmed:affiliation
Marie Curie Palliative Care Institute, Liverpool, UK. heino.hugel@mariecurie.org.uk
pubmed:publicationType
Journal Article, Comparative Study