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What Outcomes are Important for Gout Patients? In-Depth Qualitative Research into the Gout Patient Experience to Determine Optimal Endpoints for Evaluating Therapeutic Interventions

Overview of attention for article published in The Patient - Patient-Centered Outcomes Research, July 2016
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Title
What Outcomes are Important for Gout Patients? In-Depth Qualitative Research into the Gout Patient Experience to Determine Optimal Endpoints for Evaluating Therapeutic Interventions
Published in
The Patient - Patient-Centered Outcomes Research, July 2016
DOI 10.1007/s40271-016-0184-x
Pubmed ID
Authors

Sophi Tatlock, Katja Rüdell, Charlotte Panter, Rob Arbuckle, Leslie R. Harrold, William J. Taylor, Tara Symonds

Abstract

Characterized by sudden onset of severe joint pain, swelling, redness, and tenderness to touch, gout 'flare ups' have a substantial impact on quality of life (QoL). This research employed a patient-centered approach to explore the symptoms and impacts of gout, and assess the content validity of existing patient-reported outcomes (PROs). Qualitative interviews were conducted with 30 US gout patients (non-tophaceous: n = 20, tophaceous: n = 10) and five expert rheumatologists. Each interview included both concept elicitation (CE) questioning to learn about the patient experience and cognitive debriefing to assess the content validity of three PRO instruments (HAQ-DI, GAQ, and TIQ-20). Nine of the patients provided further real-time qualitative data through a smart phone application. All qualitative data were subject to thematic analysis using Atlas.ti. Two patient advisors and three expert clinicians were engaged as advisors at key stages throughout the research. Interview and real-time data identified the same core symptoms and proximal impact concepts. Severe pain (typically in joints of extremities) was described as the cardinal symptom, often accompanied by swelling, redness, heat, sensitivity to touch, and stiffness. Domains of QoL impacted included physical functioning, sleep, daily activities, and work. The PRO instruments were generally well-understood by patients, but each included items with questionable relevance to at least some of the sample, dependent on the specific joints affected. Gout patients experience severe pain in affected joints, resulting in substantial limitations in physical functioning. Both the HAQ-DI and the TIQ-20 are useful for specific research purposes in the gout population, although modifications are recommended.

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Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 101 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 101 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 20 20%
Student > Ph. D. Student 16 16%
Researcher 13 13%
Student > Bachelor 10 10%
Other 8 8%
Other 11 11%
Unknown 23 23%
Readers by discipline Count As %
Medicine and Dentistry 25 25%
Nursing and Health Professions 18 18%
Pharmacology, Toxicology and Pharmaceutical Science 6 6%
Psychology 5 5%
Social Sciences 5 5%
Other 14 14%
Unknown 28 28%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 1. 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 10 July 2016.
All research outputs
#20,656,820
of 25,374,647 outputs
Outputs from The Patient - Patient-Centered Outcomes Research
#488
of 583 outputs
Outputs of similar age
#287,256
of 370,852 outputs
Outputs of similar age from The Patient - Patient-Centered Outcomes Research
#6
of 7 outputs
Altmetric has tracked 25,374,647 research outputs across all sources so far. This one is in the 10th percentile – i.e., 10% of other outputs scored the same or lower than it.
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