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Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis

Overview of attention for article published in Journal of Patient-Reported Outcomes, January 2018
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About this Attention Score

  • Above-average Attention Score compared to outputs of the same age (59th percentile)
  • Average Attention Score compared to outputs of the same age and source

Mentioned by

twitter
4 tweeters

Citations

dimensions_citation
18 Dimensions

Readers on

mendeley
39 Mendeley
Title
Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis
Published in
Journal of Patient-Reported Outcomes, January 2018
DOI 10.1186/s41687-017-0025-2
Pubmed ID
Authors

Elissa R. Weitzman, Lauren E. Wisk, Parissa K. Salimian, Kara M. Magane, Fatma Dedeoglu, Aimee O. Hersh, Yukiko Kimura, Kenneth D. Mandl, Sarah Ringold, Marc Natter

Abstract

Children with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes. Parent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child's HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance). Contributions of these measures to HRQOL were estimated using generalized estimating equations accounting for site and patient demographics. Patients (N = 180) were 81.1% white non-Hispanic and 76.7% female. Mean age was 11.8 (SD = 3.6) years, mean disease duration was 7.7 years (SD = 3.5). Mean Total Pediatric Quality of Life was 76.7 (SD = 18.2). Mean pain interference score was 50.1 (SD = 11.1). Nearly one-in-five (17.8%) youth experienced >15 min of morning stiffness on a typical day, more than one quarter (26.7%) reported ≥1 serious medication side effect and among 90 methotrexate users, 42.2% met criteria for methotrexate intolerance. Measures of disease and treatment burden were independently negatively associated with HRQOL (all p-values <0.01). Negative associations among measures of treatment burden and HRQOL were attenuated after controlling for disease burden and clinical characteristics but remained significant. For youth with JIA, HRQOL is multidimensional, reflecting disease as well as treatment factors. Adverse treatment experiences undermine HRQOL even after accounting for disease symptoms and disease activity and should be assessed routinely to improve wellbeing.

Twitter Demographics

The data shown below were collected from the profiles of 4 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 39 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 39 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 10 26%
Student > Ph. D. Student 6 15%
Student > Master 5 13%
Other 4 10%
Student > Doctoral Student 2 5%
Other 5 13%
Unknown 7 18%
Readers by discipline Count As %
Medicine and Dentistry 11 28%
Psychology 10 26%
Unspecified 2 5%
Nursing and Health Professions 2 5%
Immunology and Microbiology 1 3%
Other 2 5%
Unknown 11 28%

Attention Score in Context

This research output has an Altmetric Attention Score of 3. 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 April 2019.
All research outputs
#7,632,584
of 14,692,315 outputs
Outputs from Journal of Patient-Reported Outcomes
#57
of 149 outputs
Outputs of similar age
#159,256
of 399,590 outputs
Outputs of similar age from Journal of Patient-Reported Outcomes
#5
of 9 outputs
Altmetric has tracked 14,692,315 research outputs across all sources so far. This one is in the 47th percentile – i.e., 47% of other outputs scored the same or lower than it.
So far Altmetric has tracked 149 research outputs from this source. They receive a mean Attention Score of 3.6. This one has gotten more attention than average, scoring higher than 60% 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 399,590 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 59% of its contemporaries.
We're also able to compare this research output to 9 others from the same source and published within six weeks on either side of this one. This one has scored higher than 4 of them.