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

Sophi Tatlock (), Katja Rüdell (), Charlotte Panter (), Rob Arbuckle (), Leslie R. Harrold (), William J. Taylor () and Tara Symonds ()
Additional contact information
Sophi Tatlock: Adelphi Values, Adelphi Mill
Katja Rüdell: AstraZeneca
Charlotte Panter: Adelphi Values, Adelphi Mill
Rob Arbuckle: Adelphi Values, Adelphi Mill
Leslie R. Harrold: University of Massachusetts Medical School
William J. Taylor: University of Otago Wellington
Tara Symonds: Clinical Outcomes Solutions Ltd

The Patient: Patient-Centered Outcomes Research, 2017, vol. 10, issue 1, No 5, 65-79

Abstract: Abstract Background and Objectives 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). Methods 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. Results 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. Conclusions 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.

Date: 2017
References: View complete reference list from CitEc
Citations:

Downloads: (external link)
http://link.springer.com/10.1007/s40271-016-0184-x Abstract (text/html)
Access to the full text of the articles in this series is restricted.

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:spr:patien:v:10:y:2017:i:1:d:10.1007_s40271-016-0184-x

Ordering information: This journal article can be ordered from
http://www.springer.com/economics/journal/40271

DOI: 10.1007/s40271-016-0184-x

Access Statistics for this article

The Patient: Patient-Centered Outcomes Research is currently edited by Christopher I. Carswell

More articles in The Patient: Patient-Centered Outcomes Research from Springer, International Academy of Health Preference Research
Bibliographic data for series maintained by Sonal Shukla () and Springer Nature Abstracting and Indexing ().