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Initial report of the osteogenesis imperfecta adult natural history initiative

Overview of attention for article published in Orphanet Journal of Rare Diseases, November 2015
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  • Good Attention Score compared to outputs of the same age (70th percentile)
  • Good Attention Score compared to outputs of the same age and source (68th percentile)

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Title
Initial report of the osteogenesis imperfecta adult natural history initiative
Published in
Orphanet Journal of Rare Diseases, November 2015
DOI 10.1186/s13023-015-0362-2
Pubmed ID
Authors

Laura L. Tosi, Matthew E. Oetgen, Marianne K. Floor, Mary Beth Huber, Ann M. Kennelly, Robert J. McCarter, Melanie F. Rak, Barbara J. Simmonds, Melissa D. Simpson, Carole A. Tucker, Fergus E. McKiernan

Abstract

A better understanding of the natural history of osteogenesis imperfecta (OI) in adulthood should improve health care for patients with this rare condition. The Osteogenesis Imperfecta Foundation established the Adult Natural History Initiative (ANHI) in 2010 to give voice to the health concerns of the adult OI community and to begin to address existing knowledge gaps for this condition. Using a web-based platform, 959 adults with self-reported OI, representing a wide range of self-reported disease severity, reported symptoms and health conditions, estimated the impact of these concerns on present and future health-related quality of life (QoL) and completed a Patient-Reported Outcomes Measurement Information System (PROMIS®) survey of health issues. Adults with OI report lower general physical health status (p < .0001), exhibit a higher prevalence of auditory (58 % of sample versus 2-16 % of normalized population) and musculoskeletal (64 % of sample versus 1-3 % of normalized population) concerns than the general population, but report generally similar mental health status. Musculoskeletal, auditory, pulmonary, endocrine, and gastrointestinal issues are particular future health-related QoL concerns for these adults. Numerous other statistically significant differences exist among adults with OI as well as between adults with OI and the referent PROMIS® population, but the clinical significance of these differences is uncertain. Adults with OI report lower general health status but are otherwise more similar to the general population than might have been expected. While reassuring, further analysis of the extensive OI-ANHI databank should help identify areas of unique clinical concern and for future research. The OI-ANHI survey experience supports an internet-based strategy for successful patient-centered outcomes research in rare disease populations.

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Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 113 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 113 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 19 17%
Student > Ph. D. Student 13 12%
Other 12 11%
Student > Bachelor 9 8%
Student > Doctoral Student 8 7%
Other 20 18%
Unknown 32 28%
Readers by discipline Count As %
Medicine and Dentistry 34 30%
Psychology 10 9%
Agricultural and Biological Sciences 9 8%
Nursing and Health Professions 8 7%
Biochemistry, Genetics and Molecular Biology 5 4%
Other 9 8%
Unknown 38 34%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 5. 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 22 December 2015.
All research outputs
#7,336,515
of 25,374,917 outputs
Outputs from Orphanet Journal of Rare Diseases
#1,023
of 3,105 outputs
Outputs of similar age
#84,759
of 292,413 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#14
of 44 outputs
Altmetric has tracked 25,374,917 research outputs across all sources so far. This one has received more attention than most of these and is in the 71st percentile.
So far Altmetric has tracked 3,105 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 8.2. This one has gotten more attention than average, scoring higher than 67% 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 292,413 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 70% of its contemporaries.
We're also able to compare this research output to 44 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 68% of its contemporaries.