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

Navarro‐Millán, Iris; Zinski, Anne; Shurbaji, Sally; Johnson, Bernadette; Fraenkel, Liana; Willig, James H.; Danila, Maria I.; Yun, Huifeng; Curtis, Jeffrey R.; Safford, Monika M.

doi:10.1002/acr.23580

Cited by 41 publications

(47 citation statements)

References 21 publications

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“…The results of this study align with previous findings supporting the acceptability of RMT apps for use in RA disease management [ 13 - 15 , 24 ]. Patients approved the development of an app for the purpose of individual symptom tracking.…”

Section: Discussionsupporting

confidence: 91%

“…It is not yet clear in the literature whether the perception of remote symptom measurement varies by gender. This is a common limitation, and the gender ratio is similar to other studies in the field [ 24 ]. Third, sampling for qualitative work inevitably results in a selection effect, whereby certain individuals might be more motivated to participate.…”

Section: Discussionsupporting

confidence: 76%

“…Patients proposed the benefits of providing information before appointments, both for the purpose of aiding understanding of their condition and to accurately recall symptom fluctuations. This sentiment resonates well with qualitative work in this area [ 24 ]; participants were keen to use RMT tools to communicate with their physician, provided they felt that this would be incorporated into their care. In a similar sense, our findings suggest that provision of information to consultants seems dependent on the trust held for that professional.…”

Section: Discussionsupporting

confidence: 56%

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Remote Measurement in Rheumatoid Arthritis: Qualitative Analysis of Patient Perspectives

White¹,

Ivan²,

Williams³

et al. 2021

JMIR Form Res

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Background Rheumatoid 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. Objective This 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. Methods A 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. Results Thematic 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. Conclusions The 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.

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Section: Discussionsupporting

confidence: 91%

Section: Discussionsupporting

confidence: 76%

Section: Discussionsupporting

confidence: 56%

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Remote Measurement in Rheumatoid Arthritis: Qualitative Analysis of Patient Perspectives

White¹,

Ivan²,

Williams³

et al. 2021

JMIR Form Res

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“…Particularly among patients, there is great interest in PROs. Navarro-Millán et al [ 36 ] showed a marked interest among patients in becoming more involved in the therapy and in collecting and sharing ePROs with their doctors when it facilitated communication. Other publications suggest that patients prefer entering ePROs from home [ 37 ].…”

Section: Discussionmentioning

confidence: 99%

Acceptance, Usage, and Barriers of Electronic Patient-Reported Outcomes Among German Rheumatologists: Survey Study

Krusche¹,

Klemm²,

Grahammer³

et al. 2020

JMIR Mhealth Uhealth

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Background The use of patient-reported outcomes (PROs) allows for patient-centered, measurable, and transparent care. Electronic PROs (ePROs) have many benefits and hold great potential to improve current usage of PROs, yet limited evidence exists regarding their acceptance, usage, and barriers among rheumatologists. Objective This study aims to evaluate the current level of acceptance, usage, and barriers among German rheumatologists regarding the use of ePROs. The importance of different ePRO features for rheumatologists was investigated. Additionally, the most frequently used PROs for patients with rheumatoid arthritis (RA) were identified. Methods Data were collected via an online survey consisting of 18 questions. The survey was completed by members of the Working Group Young Rheumatology of the German Society for Rheumatology (Arbeitsgemeinschaft Junge Rheumatologie der Deutschen Gesellschaft für Rheumatologie [DGRh]) at the 2019 annual DGRh conference. Only members currently working in clinical adult rheumatology were eligible to complete the survey. Results A total of 119 rheumatologists completed the survey, of which 107 (89.9%) reported collecting PROs in routine practice and 28 (25.5%) already used ePROs. Additionally, 44% (43/97) were planning to switch to ePROs in the near future. The most commonly cited reason for not switching was the unawareness of suitable software solutions. Respondents were asked to rate the features of ePROs on a scale of 0 to 100 (0=unimportant, 100=important). The most important features were automatic score calculation and display (mean 77.50) and simple data transfer to medical reports (mean 76.90). When asked about PROs in RA, the respondents listed pain, morning stiffness, and patient global assessment as the most frequently used PROs. Conclusions The potential of ePROs is widely seen and there is great interest in them. Despite this, only a minority of physicians use ePROs, and the main reason for not implementing them was cited as the unawareness of suitable software solutions. Developers, patients, and rheumatologists should work closely together to help realize the full potential of ePROs and ensure a seamless integration into clinical practice.

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“…[30]. Our previous work showed that patients lost interest in completing PROs if the rheumatologist did not use the provided information [31]. Thus, in the present study, we attempted to identify the information most valued by the rheumatologists to make treatment recommendations for RA so we can further determine which PROs could be utilized to measure it.…”

Section: Discussionmentioning

confidence: 99%

Which patient reported outcome domains are important to the rheumatologists while assessing patients with rheumatoid arthritis?

et al. 2019

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Background Patient-reported outcomes (PROs) aid in rheumatoid arthritis (RA) management, but it is not well understood which measures would be most relevant to the rheumatologists for making treatment decisions. Methods We recruited rheumatologists nationally to participate in moderated structured group teleconference discussions using the nominal group technique. Participants in each group generated lists of the elements from patient’s history and signs that they use to make treatment recommendations for RA. Each participant then selected the three most important elements from the generated list. The results of each group were then combined and summarized. Results Twenty-five rheumatologists participated in 4 groups (group size ranged from 4 to 8) and 150 available ranking votes across all groups. The statements generated across the 4 groups were categorized into 13 topics (including symptoms, physical function, comorbidities, social aspects, physical findings, response to treatment, treatment adherence, pain management, side effects, tests, access to care, contraception, and organ involvement), 10 of which received ranking votes. Symptoms received the highest ranking (46% of votes), followed by physical function (16%), and physical findings (13%). Among the unranked topics, social aspects had the highest number of statements (8 statements). Conclusion Rheumatologists highly valued patient-reported RA symptoms and physical function to inform their treatment decisions, even above objective data such as physical findings and test results. These results can guide the selection of validated PRO measures to assess these domains to inform the clinical care of patients with rheumatoid arthritis. Electronic supplementary material The online version of this article (10.1186/s41927-019-0087-2) contains supplementary material, which is available to authorized users.

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

Cited by 41 publications

References 21 publications

Remote Measurement in Rheumatoid Arthritis: Qualitative Analysis of Patient Perspectives

Remote Measurement in Rheumatoid Arthritis: Qualitative Analysis of Patient Perspectives

Acceptance, Usage, and Barriers of Electronic Patient-Reported Outcomes Among German Rheumatologists: Survey Study

Which patient reported outcome domains are important to the rheumatologists while assessing patients with rheumatoid arthritis?

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