Dataset Information

Perspectives of Rheumatoid Arthritis Patients on Electronic Communication and Patient-Reported Outcome Data Collection: A Qualitative Study.

ABSTRACT: OBJECTIVE:To identify the perspectives of patients with rheumatoid arthritis (RA) on electronic recording of between-visit disease activity and other patient-reported outcomes (PROs) and on sharing this information with health care providers or peers. METHODS:Patients with RA were recruited to participate in focus groups from December 2014 to April 2015. The topic guide and analysis were based on the Andersen-Newman framework. Sessions were audiorecorded, transcribed, independently coded, and analyzed for themes. RESULTS:Thirty-one patients participated in 7 focus groups. Their mean ± SD age was 51 ± 13.1 years, 94% were women, 52% were African American, 11% were Hispanic, and 37% were white. Three themes emerged: provider communication, information-seeking about RA, and social and peer support. Participants expressed a willingness to track disease activity data to share with health care providers electronically if providers would act on the information. Participants envisioned symptom tracking and information sharing as a mechanism to relay and obtain reliable information about RA. Participants were also interested in electronic communication between visits if it facilitated learning about symptom management and enhanced opportunities for social support among patients with RA. CONCLUSION:Patients with RA may be amenable to electronic collection and sharing of PRO-type data between clinical encounters if it facilitates communication with health care providers and provides access to reliable information about RA. Providing patients with social support was important for enhancing PROs collection by helping them overcome barriers by using electronic devices and overcome reservations about the value of these data.

SUBMITTER: Navarro-Millan I

PROVIDER: S-EPMC6388703 | biostudies-literature | 2019 Jan

REPOSITORIES: biostudies-literature

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Perspectives of Rheumatoid Arthritis Patients on Electronic Communication and Patient-Reported Outcome Data Collection: A Qualitative Study.

Navarro-Millán Iris I Zinski Anne A Shurbaji Sally S Johnson Bernadette B Fraenkel Liana L Willig James J Danila Maria I MI Yun Huifeng H Curtis Jeffrey R JR Safford Monika M MM

Arthritis care & research 20190101 1

<h4>Objective</h4>To identify the perspectives of patients with rheumatoid arthritis (RA) on electronic recording of between-visit disease activity and other patient-reported outcomes (PROs) and on sharing this information with health care providers or peers.<h4>Methods</h4>Patients with RA were recruited to participate in focus groups from December 2014 to April 2015. The topic guide and analysis were based on the Andersen-Newman framework. Sessions were audiorecorded, transcribed, independentl ...[more]

PMID: 29669191

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Project description:BackgroundRheumatoid arthritis (RA) is characterized by recurrent fluctuations in symptoms such as joint pain, swelling, and stiffness. Remote measurement technologies (RMTs) offer the opportunity to track symptoms continuously and in real time; therefore, they may provide a more accurate picture of RA disease activity as a complement to prescheduled general practitioner appointments. Previous research has shown patient interest in remote symptom tracking in RA and has provided evidence for its clinical validity. However, there is a lack of co-design in the current development of systems, and the features of RMTs that best promote optimal engagement remain unclear.ObjectiveThis study represents the first in a series of work that aims to develop a multiparametric RMT system for symptom tracking in RA. The objective of this study is to determine the important outcomes for disease management in patients with RA and how these can be best captured via remote measurement.MethodsA total of 9 patients (aged 23-77 years; mean 55.78, SD 17.54) with RA were recruited from King's College Hospital to participate in two semistructured focus groups. Both focus group discussions were conducted by a facilitator and a lived-experience researcher. The sessions were recorded, transcribed, independently coded, and analyzed for themes.ResultsThematic analysis identified a total of four overarching themes: important symptoms and outcomes in RA, management of RA symptoms, views on the current health care system, and views on the use of RMTs in RA. Mobility and pain were key symptoms to consider for symptom tracking as well as symptom triggers. There is a general consensus that the ability to track fluctuations and transmit such data to clinicians would aid in individual symptom management and the effectiveness of clinical care. Suggestions for visually capturing symptom fluctuations in an app were proposed.ConclusionsThe findings support previous work on the acceptability of RMT with RA disease management and address key outcomes for integration into a remote monitoring system for RA self-management and clinical care. Clear recommendations for RMT design are proposed. Future work will aim to take these recommendations into a user testing phase.

Project description:BACKGROUND:Rheumatoid arthritis (RA) is associated with significantly diminished health-related quality of life. Patient-reported outcomes (PROs) are considered important in RA; however, some symptoms such as morning joint stiffness (MJS) and fatigue that are considered important by patients are not captured by the American College of Rheumatology "core set" measures for RA trials. The US Food and Drug Administration has endorsed electronic capture of clinical trial data including PROs, and electronic PRO (ePRO) systems may lead to more accurate and complete data capture, improved compliance, and patient acceptance compared with paper-based methods. Our objective was to assess the implementation of ePRO measures of Duration and Severity of MJS, Severity of Worst Tiredness, and Severity of Worst Joint Pain in baricitinib RA-BEAM and RA-BUILD phase 3 randomized clinical trials (RCTs). METHODS:A daily electronic diary (handheld device; Invivodata®, Inc.) was utilized to capture PRO data in the RCTs. Three "reporting window" options were incorporated to accommodate differences in patients' routine daily schedules, and alarms were programmed for each reporting window. Duration of MJS was recorded in "hours and minutes," and Severity of MJS, Worst Tiredness, and Worst Joint Pain were captured on a 0 to 10 rating scale, with a higher score indicating more severe symptoms. The patients and site staff were trained to use the daily electronic diary. RESULTS:Patients with moderately to severely active RA used the daily electronic diary in the RA-BEAM study (N?=?1305) and RA-BUILD study (N?=?684). The average compliance, calculated as total days completed by patients compared with total days expected to complete the diary, through Week 12 was high (RA-BEAM 94% patients; RA-BUILD 93% patients), potentially attributable to appropriate training, clarity of instructions, simple user interface, and electronic device design. Identified process challenges included non-timely issuance of the device, low battery, inadequate training of patients before data collection, inappropriate diary set-up, and first response entry 1?day after the baseline visit. CONCLUSIONS:High compliance rates support the use of the daily electronic PRO diary in large RCTs. Despite the anticipated issues, the daily electronic diary is expected to reduce recall bias and improve the quality of PRO data collection. TRIAL REGISTRATION:RA-BEAM ( NCT01710358 ) and RA-BUILD ( NCT01721057 ).

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Dataset Information

Perspectives of Rheumatoid Arthritis Patients on Electronic Communication and Patient-Reported Outcome Data Collection: A Qualitative Study.

Publications

Perspectives of Rheumatoid Arthritis Patients on Electronic Communication and Patient-Reported Outcome Data Collection: A Qualitative Study.

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