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Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers

Overview of attention for article published in BMC Hematology, June 2018
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About this Attention Score

  • Above-average Attention Score compared to outputs of the same age (63rd percentile)

Mentioned by

policy
1 policy source
twitter
1 tweeter

Citations

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7 Dimensions

Readers on

mendeley
49 Mendeley
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Title
Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers
Published in
BMC Hematology, June 2018
DOI 10.1186/s12878-018-0106-3
Pubmed ID
Authors

Robert Michael Cronin, Tilicia L. Mayo-Gamble, Sarah-Jo Stimpson, Sherif M. Badawy, Lori E. Crosby, Jeannie Byrd, Emmanuel J. Volanakis, Adetola A. Kassim, Jean L. Raphael, Velma M. Murry, Michael R. DeBaun

Abstract

Evidence-based guidelines for sickle cell disease (SCD) health maintenance and management have been developed for primary health care providers, but not for individuals with SCD. To improve the quality of care delivered to individuals with SCD and their caregivers, the main purposes of this study were to: (1) understand the desire for patient-centered guidelines among the SCD community; and (2) adapt guideline material to be patient-centered using community-engagement strategies involving health care providers, community -based organizations, and individuals with the disease. From May-December 2016, a volunteer sample of 107 individuals with SCD and their caregivers gave feedback at community forums (n = 64) and community listening sessions (n = 43) about technology use for health information and desire for SCD-related guidelines. A team of community research partners consisting of community stakeholders, individuals living with SCD, and providers and researchers (experts) in SCD at nine institutions adapted guidelines to be patient-centered based on the following criteria: (1) understandable, (2) actionable, and (3) useful. In community forums (n = 64), almost all participants (91%) wanted direct access to the content of the guidelines. Participants wanted guidelines in more than one format including paper (73%) and mobile devices (79%). Guidelines were adapted to be patient-centered. After multiple iterations of feedback, 100% of participants said the guidelines were understandable, most (88%) said they were actionable, and everyone (100%) would use these adapted guidelines to discuss their medical care with their health care providers. Individuals with SCD and their caregivers want access to guidelines through multiple channels, including technology. Guidelines written for health care providers can be adapted to be patient-centered using Community-engaged research involving providers and patients. These patient-centered guidelines provide a framework for patients to discuss their medical care with their health care providers.

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 49 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 49 100%

Demographic breakdown

Readers by professional status Count As %
Student > Postgraduate 6 12%
Student > Master 6 12%
Researcher 5 10%
Student > Bachelor 4 8%
Student > Ph. D. Student 3 6%
Other 8 16%
Unknown 17 35%
Readers by discipline Count As %
Medicine and Dentistry 10 20%
Nursing and Health Professions 6 12%
Social Sciences 5 10%
Engineering 2 4%
Psychology 2 4%
Other 7 14%
Unknown 17 35%

Attention Score in Context

This research output has an Altmetric Attention Score of 4. 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 01 January 2019.
All research outputs
#4,166,311
of 14,549,948 outputs
Outputs from BMC Hematology
#15
of 78 outputs
Outputs of similar age
#98,410
of 272,064 outputs
Outputs of similar age from BMC Hematology
#1
of 1 outputs
Altmetric has tracked 14,549,948 research outputs across all sources so far. This one has received more attention than most of these and is in the 70th percentile.
So far Altmetric has tracked 78 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 5.1. This one has done well, scoring higher than 79% 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 272,064 tracked outputs that were published within six weeks on either side of this one in any source. This one has gotten more attention than average, scoring higher than 63% of its contemporaries.
We're also able to compare this research output to 1 others from the same source and published within six weeks on either side of this one. This one has scored higher than all of them