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Challenges of palliative care in children with inborn metabolic diseases

Overview of attention for article published in Orphanet Journal of Rare Diseases, July 2018
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About this Attention Score

  • In the top 25% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (80th percentile)
  • High Attention Score compared to outputs of the same age and source (84th percentile)

Mentioned by

news
1 news outlet
twitter
1 tweeter

Citations

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3 Dimensions

Readers on

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40 Mendeley
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Title
Challenges of palliative care in children with inborn metabolic diseases
Published in
Orphanet Journal of Rare Diseases, July 2018
DOI 10.1186/s13023-018-0868-5
Pubmed ID
Authors

Jessica I. Hoell, Jens Warfsmann, Felix Distelmaier, Arndt Borkhardt, Gisela Janßen, Michaela Kuhlen

Abstract

Our objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a large specialized PPC team. Between 01/2013 and 09/2016, 198 children, adolescents and young adults were in the care of our PPC team. Twenty-nine (14.6%) of these patients had metabolic conditions. Median age at referral was 2.6 years (0-24), median duration of care 352 days (3-2248) and median number of home visits 13 (1-80). Most patients are still alive (16; 55.2%). Median number of drugs administered was 5 (range 0-12), antiepileptics were given most frequently. Symptom burden was high in all children with metabolic disorders at referral and remained high throughout care. Predominant symptoms were gastrointestinal, respiratory and neurologic symptoms. Children with metabolic conditions, who were referred to PPC younger than 1 year of age had a shorter period of care and died earlier compared to those children, who were referred to PPC later in their lives (older than 10 years of age). Eleven (37.9%) of the children initially had no resuscitation restrictions and 7 (53.8%) of those who died, did so on ICU. About 15% of children with life-limiting conditions in PPC present with metabolic diseases. Symptom burden is high with neurologic, respiratory and gastrointestinal symptoms being the most frequent and most of those being difficult to treat. In these children, particular attention needs to be addressed to advance care planning.

Twitter Demographics

The data shown below were collected from the profile of 1 tweeter who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 40 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 40 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 11 28%
Researcher 7 18%
Student > Bachelor 5 13%
Other 2 5%
Librarian 2 5%
Other 5 13%
Unknown 8 20%
Readers by discipline Count As %
Medicine and Dentistry 12 30%
Nursing and Health Professions 12 30%
Social Sciences 3 8%
Biochemistry, Genetics and Molecular Biology 1 3%
Engineering 1 3%
Other 0 0%
Unknown 11 28%

Attention Score in Context

This research output has an Altmetric Attention Score of 10. 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 05 August 2018.
All research outputs
#1,572,372
of 13,331,643 outputs
Outputs from Orphanet Journal of Rare Diseases
#208
of 1,472 outputs
Outputs of similar age
#51,461
of 266,475 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#2
of 13 outputs
Altmetric has tracked 13,331,643 research outputs across all sources so far. Compared to these this one has done well and is in the 88th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 1,472 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 7.1. This one has done well, scoring higher than 85% of its peers.
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 266,475 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 80% of its contemporaries.
We're also able to compare this research output to 13 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 84% of its contemporaries.