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Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis

Overview of attention for article published in Neuromuscular Disorders, November 2016
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Title
Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis
Published in
Neuromuscular Disorders, November 2016
DOI 10.1016/j.nmd.2016.11.011
Pubmed ID
Authors

Andy Hiscock, Isla Kuhn, Stephen Barclay

Abstract

End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of patients affected by such conditions die without a formal end of life plan in place. We performed a systematic review to investigate conversations regarding end of life care between healthcare professionals and younger adult patients with life-limiting neuromuscular diseases. The search strategy included terms that focused on death and dying along with other factors that could impact length of life. The review found a very limited body of literature regarding end of life care conversations between young people affected by neuromuscular diseases and health professionals. The views and preferences of patients themselves have not been investigated. There is a shared reluctance of patients, family carers and healthcare professionals to initiate end of life care discussions. There are many factors that need to be investigated further in order to develop a consensus that would allow healthcare professionals to engage patients in end of life care conversations allowing them to face the end of their lives with appropriate plans in place.

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The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 46 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 46 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 10 22%
Other 6 13%
Student > Master 5 11%
Student > Bachelor 4 9%
Student > Doctoral Student 3 7%
Other 7 15%
Unknown 11 24%
Readers by discipline Count As %
Medicine and Dentistry 15 33%
Nursing and Health Professions 9 20%
Biochemistry, Genetics and Molecular Biology 4 9%
Social Sciences 3 7%
Psychology 1 2%
Other 2 4%
Unknown 12 26%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 16 February 2018.
All research outputs
#19,942,887
of 25,371,288 outputs
Outputs from Neuromuscular Disorders
#1,226
of 1,849 outputs
Outputs of similar age
#296,163
of 415,170 outputs
Outputs of similar age from Neuromuscular Disorders
#11
of 20 outputs
Altmetric has tracked 25,371,288 research outputs across all sources so far. This one is in the 18th percentile – i.e., 18% of other outputs scored the same or lower than it.
So far Altmetric has tracked 1,849 research outputs from this source. They receive a mean Attention Score of 4.2. This one is in the 30th percentile – i.e., 30% of its peers scored the same or lower than it.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 415,170 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 24th percentile – i.e., 24% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 20 others from the same source and published within six weeks on either side of this one. This one is in the 35th percentile – i.e., 35% of its contemporaries scored the same or lower than it.