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A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network

Overview of attention for article published in Orphanet Journal of Rare Diseases, April 2017
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About this Attention Score

  • In the top 5% of all research outputs scored by Altmetric
  • Among the highest-scoring outputs from this source (#30 of 1,596)
  • High Attention Score compared to outputs of the same age (94th percentile)
  • High Attention Score compared to outputs of the same age and source (95th percentile)

Mentioned by

twitter
67 tweeters
facebook
8 Facebook pages
wikipedia
1 Wikipedia page

Citations

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15 Dimensions

Readers on

mendeley
42 Mendeley
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Title
A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network
Published in
Orphanet Journal of Rare Diseases, April 2017
DOI 10.1186/s13023-017-0623-3
Pubmed ID
Authors

Rebecca C. Spillmann, Allyn McConkie-Rosell, Loren Pena, Yong-Hui Jiang, Kelly Schoch, Nicole Walley, Camilla Sanders, Jennifer Sullivan, Stephen R. Hooper, Vandana Shashi

Abstract

Patients' stories of their illnesses help bridge the divide between patients and providers, facilitating more humane medical care. Illness narratives have been classified into three types: restitution (expectation of recovery), chaos (suffering and loss), and quest (unexpected positive effect from illness). Undiagnosed patients have unique illness experiences and obtaining their narratives would provide insights into the medical and emotional impact of living with an undiagnosed illness. Adults and children with undiagnosed diseases apply to be evaluated by the Undiagnosed Diseases Network (UDN). Written illness narratives from 40 UDN applicants, including 20 adult probands who applied for themselves and 20 parents who applied for their children, were analyzed for: 1) narrative content and 2) narrative type. Narrative content: could be grouped into three themes: 1) Expectations of the UDN: the majority felt they had no further healthcare options and hoped the UDN would provide them with a diagnosis, with the adults expecting to return to their previously healthy life and the parents wanting information to manage their child's healthcare. 2) Personal medical information: the narratives reported worsening of symptoms and some offered opinions regarding the cause of their illness. The proband narratives had few objective findings, while parental narratives had detailed objective information. 3) Experiences related to living with their undiagnosed illness: frustration at being undiagnosed was expressed. The adults felt they had to provide validation of their symptoms to providers, given the lack of objective findings. The parents worried that something relevant to their child's management was being overlooked. Narrative type: All the narratives were of the chaos type, but for different reasons, with the probands describing loss and suffering and the parents expressing fear for their child's future. The parental narratives also had elements of restitution and quest, with acceptance of "a new normal", and an emphasis on the positive aspects of their child's illness which was absent from the probands. These narratives illustrate the chaos that coexists with being undiagnosed. The differences between the proband and parental narratives suggest that these two groups have different needs that need to be considered during their evaluation and management.

Twitter Demographics

The data shown below were collected from the profiles of 67 tweeters 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 42 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 42 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 10 24%
Student > Ph. D. Student 6 14%
Student > Bachelor 6 14%
Researcher 4 10%
Student > Postgraduate 3 7%
Other 7 17%
Unknown 6 14%
Readers by discipline Count As %
Biochemistry, Genetics and Molecular Biology 10 24%
Medicine and Dentistry 7 17%
Psychology 4 10%
Nursing and Health Professions 4 10%
Social Sciences 3 7%
Other 5 12%
Unknown 9 21%

Attention Score in Context

This research output has an Altmetric Attention Score of 49. 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 2018.
All research outputs
#399,652
of 14,534,722 outputs
Outputs from Orphanet Journal of Rare Diseases
#30
of 1,596 outputs
Outputs of similar age
#14,141
of 266,723 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#1
of 21 outputs
Altmetric has tracked 14,534,722 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 97th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 1,596 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 7.3. This one has done particularly well, scoring higher than 98% 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 266,723 tracked outputs that were published within six weeks on either side of this one in any source. This one has done particularly well, scoring higher than 94% of its contemporaries.
We're also able to compare this research output to 21 others from the same source and published within six weeks on either side of this one. This one has done particularly well, scoring higher than 95% of its contemporaries.