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Centre for Policy on Ageing | |
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What matters to patients and carers in the care and management of rare long-term neurological conditions?
— a study using the Delphi technique | | Author(s) | Catherine Sackley, Thomas Hoppit, Sonal Shah |
| Journal title | Ageing & Health: the Journal of the Institute of Ageing and Health (West Midlands), no 18, 2012 |
| Publisher | Institute of Ageing and Health, West Midlands, 2012 |
| Pages | pp 9-16 |
| Source | www.iah-wmids.org.uk |
| Keywords | Nervous system diseases ; Long term ; Medical care ; Research ; Qualitative Studies. |
| Annotation | Long-term neurological conditions (LTNC) are a group of disorders that have no known cure. Consequently, interventions generally focus on symptom management to enhance quality of life and maintain independence for as long as possible. Many rare LTNCs such as motor neurone disease (MND) and Huntingdon's disease are progressive with short survival time after diagnosis. Other conditions such as Charcot Marie Tooth, whilst extremely limiting, are non-progressive and non life-shortening. Despite overlap in symptoms of different conditions, patients' needs vary, depending on the conditions they have and in progressive disease, the stage of disease progression they are at. Although the National Service Framework for Long term Neurological Conditions (NSF) identifies 11 quality requirements, there has been little research exploring services received by patients with rare LTNC. This study aims to identify the priorities of an expert panel of patients and carers, in terms of health and social care and management of rare LTNC; and to establish how such priorities differ to patients with more common neurological conditions. (RH). |
| Accession Number | CPA-121208201 |
| Classmark | CR: 4Q: LK: 3A: 3DP |
Data © Centre for Policy on Ageing |
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| ...from the Ageinfo database published by Centre for Policy on Ageing. |
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