Remote Measurement in Rheumatoid Arthritis: Qualitative Analysis of Patient Perspectives

Abstract

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.

Smartphone‐Assisted Patient‐Initiated Care Versus Usual Care in Patients With Rheumatoid Arthritis and Low Disease Activity: A Randomized Controlled Trial

“…The value of smartphone apps and monitoring has previously been indicated for patients and rheumatologists. Patients have been predominantly positive about online self‐monitoring, indicating that it helps them assess the course of their disease, that they feel less dependent on the health care professional, and that it aids them in communication with their physician ( 23 , 37 , 38 , 39 ). In addition, rheumatologists with patients that self‐monitor with ePROs are less likely to have difficulty estimating how patients were doing compared to rheumatologists who do not have access to ePRO data ( 40 ).…”

A systematic review of engagement reporting in remote measurement studies for health symptom tracking

“…The current state of engagement with RMTs is unclear. Qualitative research suggests acceptance of the use of technology for symptom monitoring in conditions such as depression 15 , multiple sclerosis 16 , epilepsy 17 , arthritis 18 and fibromyalgia 19 . In practice however, reported engagement statistics are hugely heterogeneous.…”

Patient participation in defining best-practice rheumatology service provision in Aotearoa New Zealand: a qualitative study with service consumers

“…These are remarkably similar ideas to those characterised as desirable by our patient-participants. Another focus group study in a rheumatology service in the UK also reports similar aspects of rheumatology care to be valued by patients and should continue to be improved; these included acknowledgement of factors of importance to the patient, patient-centred care and continuity of care [ 47 ]. Although the data are limited, these studies support our data in emphasising the importance of relationships and aspects of patient-centred care.…”