Experiences of a patient‐initiated self‐monitoring service in inflammatory arthritis: A qualitative exploration

McBain, Hayley; Newman, Stanton; Shipley, Michael; Olaleye, Abigail; Moore, Samantha

doi:10.1002/msc.1232

Cited by 5 publications

(11 citation statements)

References 40 publications

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“…Due to this lack of professional staff, patients are facing substential diagnostic delays, often causing irreversible damage [26]. In line with other reports, current care was reported to be inefficient and burdensome [27,28].…”

Section: Discussionmentioning

confidence: 81%

“…Improving this access to HCP feedback should be a main goal of a new care model approach. Prior studies reported on the benefit of guidebooks [29] and an initial structured training with checklists to inform when to contact the rheumatology team [27].…”

Section: Discussionmentioning

confidence: 99%

“…Interestingly, parts of the validated questionnaire used (RAPID3) seemed outdated or not clear enough for many patients, highlighting the need for continuous reevaluation. A PIFU-based strategy has been demonstrated to be safe, yet previous qualitative research revealed that it also causes patient anxiety [27] due to more patient responsibility [33] and implementation can be facilitated by increasing the responsiveness of the system and the system incorporating regular disease monitoring. Overall, we believe a safety net in form of planned semi-automated asynchronous monitoring provides a balanced risk-benefit ratio [15].…”

Section: Discussionmentioning

confidence: 99%

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Digitally-supported patient-centered asynchronous outpatient follow-up in rheumatoid arthritis - an explorative qualitative study

Stenzel

Hadaschik

May

et al. 2022

BMC Health Serv Res

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Objective A steadily increasing demand and decreasing number of rheumatologists push current rheumatology care to its limits. Long travel times and poor accessibility of rheumatologists present particular challenges for patients. Need-adapted, digitally supported, patient-centered and flexible models of care could contribute to maintaining high-quality patient care. This qualitative study was embedded in a randomized controlled trial (TELERA) investigating a new model of care consisting of the use of a medical app for ePRO (electronic patient-reported outcomes), a self-administered CRP (C-reactive protein) test, and joint self-examination in rheumatoid arthritis (RA) patients. The qualitative study aimed to explore experiences of RA patients and rheumatology staff regarding (1) current care and (2) the new care model. Methods The study included qualitative interviews with RA patients (n = 15), a focus group with patient representatives (n = 1), rheumatology nurses (n = 2), ambulatory rheumatologists (n = 2) and hospital-based rheumatologists (n = 3). Data was analyzed by qualitative content analysis. Results Participants described current follow-up care as burdensome. Patients in remission have to travel long distances. Despite pre-scheduled visits physicians lack questionnaire results and laboratory results to make informed shared decisions during face-to-face visits. Patients reported that using all study components (medical app for ePRO, self-performed CRP test and joint self-examination) was easy and helped them to better assess their disease condition. Parts of the validated questionnaire used in the trial (routine assessment of patient index data 3; RAPID3) seemed outdated or not clear enough for many patients. Patients wanted to be automatically contacted in case of abnormalities or at least have an app feature to request a call-back or chat. Financial and psychological barriers were identified among rheumatologists preventing them to stop automatically scheduling new appointments for patients in remission. Rheumatology nurses pointed to the potential lack of personal contact, which may limit the holistic care of RA-patients. Conclusion The new care model enables more patient autonomy, allowing patients more control and flexibility at the same time. All components were well accepted and easy to carry out for patients. To ensure success, the model needs to be more responsive and allow seamless integration of education material. Trial registration The study was prospectively registered on 2021/04/09 at the German Registry for Clinical Trials (DRKS00024928).

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Section: Discussionmentioning

confidence: 81%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Digitally-supported patient-centered asynchronous outpatient follow-up in rheumatoid arthritis - an explorative qualitative study

Stenzel

Hadaschik

May

et al. 2022

BMC Health Serv Res

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“…At the same time, traditional physician-driven monitoring strategies may lead to patients repeatedly presenting for routine outpatient follow-up when they are feeling well and specialist review is unlikely to result in clinical actions. Both patients and clinicians may find such visits unnecessary or inefficient 17–19. Finally, despite well-recognised benefits in terms of patient-centredness, the implementation and impact of routine registration of PROMs are limited by a lack of integrated instruments, non-disease-specific tools and time constraints 20–22…”

Section: Introductionmentioning

confidence: 99%

Effectiveness and cost-effectiveness of combined asynchronous telemonitoring and patient-initiated care for spondyloarthritis: protocol for a pragmatic multicentre randomised controlled trial (TeleSpA Study)

et al. 2023

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IntroductionDuring the COVID-19 pandemic, an accelerated uptake of remote monitoring strategies, replacing traditional face-to-face care, has been observed. However, data on the effects of remote care interventions for patients with rheumatic and musculoskeletal diseases remain scarce and interpretation is hampered by study heterogeneity and research quality concerns. High-quality evidence is required to guide future implementation in clinical practice, with health economic analyses identified as an important knowledge gap. Randomised controlled trials (RCTs) comparing telemonitoring with conventional care for patients with spondyloarthritis (SpA) are currently lacking.Methods and analysisTeleSpA is a pragmatic, multicentre RCT investigating the effectiveness and cost-effectiveness of combined asynchronous telemonitoring and patient-initiated follow-up for patients with SpA, compared with conventional care. Two-hundred patients will be recruited at two hospitals and randomised (1:1) to the study intervention or standard care. The primary endpoint is a reduction in the number of follow-up visits by ≥25% in the intervention compared with standard care group, during a 1-year period. Secondary endpoints are (a) non-inferiority of the study intervention with regard to health outcomes, quality of care and patient-reported experience with care; and (b) cost-effectiveness of the intervention, evaluated through a prospective trial-based cost-utility analysis. In addition, experiences with the study intervention will be assessed among patients and healthcare providers, and factors associated with primary and secondary endpoints will be identified.Ethics and disseminationThis study was approved by the Medical Research Ethics Committee of the Academic Hospital Maastricht/Maastricht University (NL71041.068.19/METC 19-059). Results will be disseminated through publications in peer-reviewed journals and conference presentations.Trial registration numberNCT04673825.

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“…These patients are scheduled for regular follow-up visits in specialist health care, which can be time-consuming, especially for those active in the workforce. Patients have also reported that in this mode of regular follow-up the health care professionals (HPs) only see a narrow timeframe of their disease course, with important changes often taking place between visits [ 1 ].…”

Section: Introductionmentioning

confidence: 99%

Follow-Up of Patients With Axial Spondyloarthritis in Specialist Health Care With Remote Monitoring and Self-Monitoring Compared With Regular Face-to-Face Follow-Up Visits (the ReMonit Study): Protocol for a Randomized, Controlled Open-Label Noninferiority Trial

Berg,

Tveter,

Bakland

et al. 2023

JMIR Res Protoc

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Background Patients with chronic inflammatory joint diseases such as axial spondyloarthritis have traditionally received regular follow-up in specialist health care to maintain low disease activity. The follow-up has been organized as prescheduled face-to-face visits, which are time-consuming for both patients and health care professionals. Technology has enabled the remote monitoring of disease activity, allowing patients to self-monitor their disease and contact health care professionals when needed. Remote monitoring or self-monitoring may provide a more personalized follow-up, but there is limited research on how these follow-up strategies perform in maintaining low disease activity, patient satisfaction, safety, and cost-effectiveness. Objective The Remote Monitoring in Axial Spondyloarthritis (ReMonit) study aimed to assess the effectiveness of digital remote monitoring and self-monitoring in maintaining low disease activity in patients with axial spondyloarthritis. Methods The ReMonit study is a 3-armed, single-site, randomized, controlled, open-label noninferiority trial including patients with axial spondyloarthritis with low disease activity (Ankylosing Spondylitis Disease Activity Score <2.1) and on stable treatment with a tumor necrosis factor inhibitor. Participants were randomized 1:1:1 to arm A (usual care, face-to-face visits every sixth month), arm B (remote monitoring, monthly digital registration of patient-reported outcomes), or arm C (patient-initiated care, self-monitoring, no planned visits during the study period). The primary end point was disease activity measured with the Ankylosing Spondylitis Disease Activity Score, evaluated at 6, 12, and 18 months. We aimed to include 240 patients, 80 in each arm. Secondary end points included other measures of disease activity, patient satisfaction, safety, and cost-effectiveness. Results The project is funded by the South-Eastern Norway Regional Health Authority and Centre for the treatment of Rheumatic and Musculoskeletal Diseases (REMEDY), Diakonhjemmet Hospital, Norway. Enrollment started in September 2021 and was completed with 242 patients by June 2022. The data collection will be completed in December 2023. Conclusions To our knowledge, this trial will be among the first to evaluate the effectiveness, safety, and cost-effectiveness of remote digital monitoring and self-monitoring of patients with axial spondyloarthritis compared with usual care. Hence, the ReMonit study will contribute important knowledge to personalized follow-up strategies for patients with axial spondyloarthritis. These results may also be relevant for other patient groups with inflammatory joint diseases. Trial Registration ClinicalTrials.gov NCT05031767; hpps://www.clinicaltrials.gov/study/NCT05031767 International Registered Report Identifier (IRRID) DERR1-10.2196/52872

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Experiences of a patient‐initiated self‐monitoring service in inflammatory arthritis: A qualitative exploration

Cited by 5 publications

References 40 publications

Digitally-supported patient-centered asynchronous outpatient follow-up in rheumatoid arthritis - an explorative qualitative study

Digitally-supported patient-centered asynchronous outpatient follow-up in rheumatoid arthritis - an explorative qualitative study

Effectiveness and cost-effectiveness of combined asynchronous telemonitoring and patient-initiated care for spondyloarthritis: protocol for a pragmatic multicentre randomised controlled trial (TeleSpA Study)

Follow-Up of Patients With Axial Spondyloarthritis in Specialist Health Care With Remote Monitoring and Self-Monitoring Compared With Regular Face-to-Face Follow-Up Visits (the ReMonit Study): Protocol for a Randomized, Controlled Open-Label Noninferiority Trial

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