Patients with axial spondyloarthritis reported willingness to use remote care and showed high adherence to electronic patient-reported outcome measures: an 18-month observational study

Rheumatology Rheumatology International https://doi.org/10.1007/s00296-024-05673-7 INTERNATIONAL OBSERVATIONAL RESEARCH Patients with axial spondyloarthritis reported willingness to use remote care and showed high adherence to electronic patient‑reported outcome measures: an 18‑month observational study Emil Eirik Kvernberg Thomassen1,2 · Inger Jorid Berg1 · Eirik Klami Kristianslund1 · Anne Therese Tveter1,3 · Gunnstein Bakland4,5 · Laure Gossec6,7 · Sarah Hakim1 · Gary John Macfarlane8 · Annette de Thurah9,10 · Nina Østerås1,2 Received: 29 May 2024 / Accepted: 27 July 2024 © The Author(s) 2024 Abstract Remote monitoring using electronic patient reported outcomes (ePROs) in axial spondyloarthritis (axSpA) may improve self-management and reduce the need for consultations. However, knowledge regarding patients’ willingness to use remote care and adherence to reporting ePROs is scarce. The objective of this study was to assess axSpA patients’ willingness to use remote care and adherence to reporting of ePROs. The study was part of a three-armed randomized controlled trial testing digital follow-up strategies (The ReMonit study, NCT: 05031767). AxSpA patients in low disease activity were randomized to usual care, remote monitoring, or patient-initiated care. Demographics, clinical data, and patients’ willingness to use remote care were collected at baseline. EPROs were reported either monthly or quarterly by the remote monitoringand patient-initiated care group over 18 months, respectively. Adherence to reporting was calculated as number of ePROs completed divided by the total number requested. Mixed model logistic regression was utilized to assess factors associated with adherence to reporting of ePROs. In total 242 patients (median age 43 years, 75% males) were included. The majority (96%) reported high willingness to use remote care. Adherence to reporting ePROs remained high over 18 months by remote monitoring and patient-initiated care groups [median (IQR): 88% (77–100) vs. 83% (66–100)]. No patient characteristics were significantly associated with adherence to reporting of ePROs. The high degree of willingness and adherence to reporting ePROs over time indicates that the majority of axSpA patients with low disease activity are motivated to use remote care. Keywords Digital health · Axial spondyloarthritis · Rheumatology · Remote monitoring Introduction Axial spondyloarthritis (axSpA) is a chronic inflammatory disease of the axial skeleton, which may also affect peripheral joints and have extra-articular manifestations [1]. The disease has significant impact on the patients’ daily life [2], and the management of axSpA is lifelong with regular disease monitoring in order to achieve sustained low disease activity and optimized treatment [3]. During the last decades, advancements in therapeutics have improved treatment outcomes [4]. However, as the disease is characterized by fluctuations in disease activity with episodic Extended author information available on the last page of the article flares, continuous monitoring of disease can provide valuable insight both for patients and healthcare providers [5, 6]. The access to timely care may be challenging due to the increasing number of patients and healthcare services facing workforce shortages [7, 8], necessitating alternative ways of delivering adequate care for patients with axSpA [8]. Remote care is an alternative to face-to-face visits that may improve the delivery of care in axSpA patients [9]. While remote care covers a wide range of modalities, the most commonly used modalities include telephone- and video consultations, asynchronous messaging, and regular monitoring of electronic patient-reported outcomes (ePROs) of disease activity [8]. The utilization of remote care and monitoring of ePROs has the potential to enhance patients’ autonomy and allow for more flexible and personalized care Vol.:(0123456789) Rheumatology International [10–12]. Additionally, previous research on remote care has indicated that remote care may be acceptable for rheumatic patients [13]. While the use of remote care and reporting of ePROs could improve access to timely care [12, 14], further studies are needed to investigate axSpA patients’ willingness to use remote care and adherence to reporting of ePROs. Although, previous studies on axSpA patients’ adherence to ePROs have shown promising results over shorter time periods of up to 6 and 12 months [15, 16], studies with longer follow-up are needed. In addition, previous research has investigated adherence to reporting of ePROs on a daily or weekly basis [16, 17]. Frequent reporting of ePROs may be burdensome for patients, and existing evidence is conflicting regarding the optimal frequency of reporting ePROs and how this may affect adherence [17]. Another key component for successful utilization of remote care is to identify potential subgroups of patients with low or high adherence to reporting of ePROs. This may support healthcare providers in identifying patients that may benefit from remote care versus patients who should continue to receive usual face-to-face care. This study aimed to assess the degree of willingness to use remote care and compare patients’ characteristics across different levels of willingness. Furthermore, this study aimed to examine the adherence to reporting of ePROs over an 18 months follow-up period, and to identify potential subgroups and factors associated with adherence to reporting of ePROs. Patients and methods Design and setting Data were collected from patients with axSpA participating in a three-armed non-inferiority randomized controlled trial: remote monitoring of axial spondyloarthritis in specialist healthcare (ReMonit) [18]. The patients were recruited at the outpatient clinic at Diakonhjemmet Hospital between September 2021 and June 2022 and followed over 18 months. All patients provided a written consent to participate in the study. Patients Patients were included according to the inclusion and exclusion criteria in the ReMonit study [18]. In short, patients were included in the trial if they had stable treatment with tumor necrosis factor inhibitors (TNFi) during the last 6 months and had low disease activity defined as Ankylosing Spondylitis Disease Activity score (ASDAS) < 2.1 at inclusion [19, 20]. Randomization and data collection At baseline, patients were randomized 1:1:1 to either usual care (face-to-face visit at hospital every 6th month, no reporting of ePRO), remote monitoring (no pre-scheduled visits, monthly reporting of ePROs, monitored by study nurse) or patient-initiated care (no pre-scheduled visits, quarterly reporting of ePROs, not monitored). Patients randomized to remote monitoring and patient-initiated care groups downloaded an app (MyDignio) and were instructed to complete ePROs monthly or quarterly, respectively. Patients in the remote monitoring group were informed that the ePRO data would be routinel (...truncated)