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The burden of amyloid light chain amyloidosis on health-related quality of life

Overview of attention for article published in Orphanet Journal of Rare Diseases, January 2017
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  • In the top 25% of all research outputs scored by Altmetric
  • Good Attention Score compared to outputs of the same age (77th percentile)
  • Above-average Attention Score compared to outputs of the same age and source (64th percentile)

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Title
The burden of amyloid light chain amyloidosis on health-related quality of life
Published in
Orphanet Journal of Rare Diseases, January 2017
DOI 10.1186/s13023-016-0564-2
Pubmed ID
Authors

Martha Bayliss, Kristen L. McCausland, Spencer D. Guthrie, Michelle K. White

Abstract

Light chain (AL) amyloidosis is a rare disease characterized by misfolded amyloid protein deposits in tissues and vital organs, and little is known about the burden of AL amyloidosis on health-related quality of life. This study aimed to quantify the burden of AL amyloidosis in terms of health-related quality of life in a diverse, community-based sample of AL amyloidosis patients. The SF-36v2® Health Survey (SF-36v2), a widely used generic measure of health-related quality of life (using physical and mental summary scales and subscales assessing eight aspects of functioning and well-being), was administered as an online survey of AL amyloidosis patients with AL amyloidosis (ClinicalTrials.gov, NCT02574676 ; n = 341). Compared with adjusted general population sample norms, health-related quality of life of AL amyloidosis patients was significantly worse across all SF-36v2 scales and summary measures based on analysis of variance (p < 0.05 for all). The largest decrement in AL amyloidosis patients was related to General Health (Δ = 9.7; p < 0.001). With the exception of Bodily Pain and Mental Health, differences were also clinically meaningful based on established clinically minimal important differences. The burden of AL amyloidosis overall and in key subgroups tended to be greater on physical health than on mental health. Stratified analyses indicated additional burden among patients with recently diagnosed disease and those with cardiac involvement than among their respective counterparts. Understanding the burden of AL amyloidosis highlights the unmet need for treatment, helps physicians identify ancillary treatments and services geared towards improving patients' functioning, well-being, and overall health-related quality of life. These findings also help to support the use of health-related quality of life end points as important outcome measures in current and future treatment studies. ClinicalTrials.gov, NCT02574676 . Registered October 5, 2015.

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Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 65 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 65 100%

Demographic breakdown

Readers by professional status Count As %
Student > Bachelor 8 12%
Student > Master 7 11%
Other 6 9%
Student > Doctoral Student 3 5%
Student > Ph. D. Student 3 5%
Other 5 8%
Unknown 33 51%
Readers by discipline Count As %
Medicine and Dentistry 12 18%
Nursing and Health Professions 4 6%
Psychology 3 5%
Social Sciences 3 5%
Agricultural and Biological Sciences 3 5%
Other 8 12%
Unknown 32 49%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 7. 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 25 January 2017.
All research outputs
#4,459,749
of 22,940,083 outputs
Outputs from Orphanet Journal of Rare Diseases
#594
of 2,635 outputs
Outputs of similar age
#92,018
of 417,650 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#17
of 48 outputs
Altmetric has tracked 22,940,083 research outputs across all sources so far. Compared to these this one has done well and is in the 80th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 2,635 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 7.6. This one has done well, scoring higher than 77% 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 417,650 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 77% of its contemporaries.
We're also able to compare this research output to 48 others from the same source and published within six weeks on either side of this one. This one has gotten more attention than average, scoring higher than 64% of its contemporaries.