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European palliative care guidelines : how well do they meet the needs of people with impaired cognition?

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Abstract
Objective: Numbers of people dying with cognitive impairment (intellectual disability (ID), dementia or delirium) are increasing. We aimed to examine a range of European national palliative care guidelines to determine if, and how well, pain detection and management for people dying with impaired cognition are covered. Methods: Questionnaires were sent to 14 country representatives of the European Pain and Impaired Cognition (PAIC) network who identified key national palliative care guidelines. Data was collected on guideline content: inclusion of advice on pain management, whether cognitively impaired populations were mentioned, assessment tools and management strategies recommended. Quality of guideline development was assessed with the Appraisal of Guidelines Research and Evaluation (AGREE) instrument. Results: 11 countries identified palliative care guidelines, 10 of which mentioned pain management in general. Of these, seven mentioned cognitive impairment (3 dementia, 2 ID and 4 delirium). Half of guidelines recommended the use of pain tools for people with cognitive impairment; recommended tools were not all validated for the target populations. Guidelines from the UK, the Netherlands and Finland included most information on pain management and detection in impaired cognition. Guidelines from Iceland, Norway and Spain scored most highly on AGREE rating in terms of developmental quality. Conclusions: European national palliative care guidelines may not meet the needs of the growing population of people dying with cognitive impairment. New guidelines should consider suggesting the use of observational pain tools for people with cognitive impairment. Better recognition of their needs in palliative care guidelines may drive improvements in care.
Keywords
NURSING-HOME RESIDENTS, INTELLECTUAL DISABILITY, DEMENTIA, PAIN, RECOMMENDATIONS, PREVALENCE, SCALE, TOOLS, LIFE

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Please use this url to cite or link to this publication:

Chicago
Sampson, Elisabeth L, Jenny T van der Steen, Sophie Pautex, Pescha Svartzman, Valentina Sacchi, Lieve Van den Block, and Nele Van Den Noortgate. 2015. “European Palliative Care Guidelines : How Well Do They Meet the Needs of People with Impaired Cognition?” Bmj Supportive & Palliative Care 5 (3): 301–305.
APA
Sampson, Elisabeth L, van der Steen, J. T., Pautex, S., Svartzman, P., Sacchi, V., Van den Block, L., & Van Den Noortgate, N. (2015). European palliative care guidelines : how well do they meet the needs of people with impaired cognition? BMJ SUPPORTIVE & PALLIATIVE CARE, 5(3), 301–305.
Vancouver
1.
Sampson EL, van der Steen JT, Pautex S, Svartzman P, Sacchi V, Van den Block L, et al. European palliative care guidelines : how well do they meet the needs of people with impaired cognition? BMJ SUPPORTIVE & PALLIATIVE CARE. 2015;5(3):301–5.
MLA
Sampson, Elisabeth L, Jenny T van der Steen, Sophie Pautex, et al. “European Palliative Care Guidelines : How Well Do They Meet the Needs of People with Impaired Cognition?” BMJ SUPPORTIVE & PALLIATIVE CARE 5.3 (2015): 301–305. Print.
@article{8513402,
  abstract     = {Objective: Numbers of people dying with cognitive impairment (intellectual disability (ID), dementia or delirium) are increasing. We aimed to examine a range of European national palliative care guidelines to determine if, and how well, pain detection and management for people dying with impaired cognition are covered. 
Methods: Questionnaires were sent to 14 country representatives of the European Pain and Impaired Cognition (PAIC) network who identified key national palliative care guidelines. Data was collected on guideline content: inclusion of advice on pain management, whether cognitively impaired populations were mentioned, assessment tools and management strategies recommended. Quality of guideline development was assessed with the Appraisal of Guidelines Research and Evaluation (AGREE) instrument. 
Results: 11 countries identified palliative care guidelines, 10 of which mentioned pain management in general. Of these, seven mentioned cognitive impairment (3 dementia, 2 ID and 4 delirium). Half of guidelines recommended the use of pain tools for people with cognitive impairment; recommended tools were not all validated for the target populations. Guidelines from the UK, the Netherlands and Finland included most information on pain management and detection in impaired cognition. Guidelines from Iceland, Norway and Spain scored most highly on AGREE rating in terms of developmental quality. 
Conclusions: European national palliative care guidelines may not meet the needs of the growing population of people dying with cognitive impairment. New guidelines should consider suggesting the use of observational pain tools for people with cognitive impairment. Better recognition of their needs in palliative care guidelines may drive improvements in care.},
  author       = {Sampson, Elisabeth L and van der Steen, Jenny T and Pautex, Sophie and Svartzman, Pescha and Sacchi, Valentina and Van den Block, Lieve and Van Den Noortgate, Nele},
  issn         = {2045-435X},
  journal      = {BMJ SUPPORTIVE \& PALLIATIVE CARE},
  keyword      = {NURSING-HOME RESIDENTS,INTELLECTUAL DISABILITY,DEMENTIA,PAIN,RECOMMENDATIONS,PREVALENCE,SCALE,TOOLS,LIFE},
  language     = {eng},
  number       = {3},
  pages        = {301--305},
  title        = {European palliative care guidelines : how well do they meet the needs of people with impaired cognition?},
  url          = {http://dx.doi.org/10.1136/bmjspcare-2014-000813},
  volume       = {5},
  year         = {2015},
}

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