Observational studyBMJ open2020
Patients' experiences regarding self-monitoring of the disease course: an observational pilot study in patients with inflammatory rheumatic diseases at a rheumatology outpatient clinic in The Netherlands.
Observational study in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 2 of them syntheses that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
17 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Effectiveness of Ecological Momentary Interventions on Pain, Mental Health, and Quality of Life in Individuals With Rheumatic Diseases: A Systematic Review and Meta-Analysis of Randomized Controlled Trials.Journal of nursing management · 2025Pooled it
- Engagement and attrition with eHealth tools for remote monitoring in chronic arthritis: a systematic review and meta-analysis.RMD open · 2022Pooled it
- Perspectives on and Experiences With Remote Monitoring and Patient-Initiated Care Among Norwegian Patients With Axial Spondyloarthritis: Qualitative Study.Journal of medical Internet research · 2025Trial
- 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 international · 2024Trial
- Digitally supported shared decision-making and treat-to-target in rheumatology: a qualitative study embedded in a multicenter randomized controlled trial.Rheumatology international · 2023Trial
- Smartphone-Assisted Patient-Initiated Care Versus Usual Care in Patients With Rheumatoid Arthritis and Low Disease Activity: A Randomized Controlled Trial.Arthritis & rheumatology (Hoboken, N.J.) · 2022Trial
- Correlation study: electrical impedance-based approximation of knee joint angle and extensor.BMC musculoskeletal disorders · 2026Article
- Article
- Self-Monitoring Practices and Use of Self-Monitoring Technologies by People with Rheumatic and Musculoskeletal Diseases: An International Survey Study.Healthcare (Basel, Switzerland) · 2024Article
- Development of a novel clinimetric tool: PAtient Reported Disease Activity Index in Rheumatoid Arthritis (PARDAI-RA) by PANLAR, for the assessment of patients living with rheumatoid arthritis.Clinical rheumatology · 2024Article
- Article
- Article
- Predictors for response to electronic patient-reported outcomes in routine care in patients with rheumatoid arthritis: a retrospective cohort study.Rheumatology international · 2023Article
- Facilitators and barriers to adhere to monitoring disease activity with ePROs: a focus group study in patients with inflammatory arthritis.Rheumatology international · 2023Article
- Who stop telemonitoring disease activity and who adhere: a prospective cohort study of patients with inflammatory arthritis.BMC rheumatology · 2022Article
- Correlation of patient-reported routine assessment of patient index data with clinical measures of disease activity in psoriatic arthritis.International journal of rheumatic diseases · 2022Article
- The ideal mHealth-application for rheumatoid arthritis: qualitative findings from stakeholder focus groups.BMC musculoskeletal disorders · 2021Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesSelf-monitoring the disease course is a relatively new concept in the management of patients with inflammatory rheumatic diseases (IRDs). The aims of this pilot study were to obtain patients' experiences with online self-monitoring, to assess information about the agreement between the disease course assessed with patient-reported outcome measures (PROMs) and an objectively measured Disease Activity Score 28 (DAS28) by the rheumatologist, and to assess adherence to predetermined PROM frequency intervals.
designObservational study using qualitative and quantitative methods.
settingThe rheumatology outpatient clinic of a teaching hospital in The Netherlands (secondary care).
participants47 patients with an IRD who regularly attended the outpatient clinic.
methodsPatients completed PROMs by using an online self-monitoring program. Their experiences regarding self-monitoring were qualitatively assessed through a focus group discussion and telephone interviews using a thematic analysis approach. Adherence to the predefined PROM frequency (completed PROM assessments within the predetermined frequency) and the agreement between the DAS28 course and PROM values (Rheumatoid Arthritis Disease Activity Index-5 and the Rheumatoid Arthritis Impact of Disease (RAID)) were quantitatively assessed using descriptives.
resultsForty-seven patients participated, most of them diagnosed with rheumatoid arthritis (n=38, 80.9%). Three themes were identified: knowledge about and insight into the disease (activity), patient-professional interaction and functionality of the program. Mean adherence to the predetermined PROM frequency was 68.1%. The RAID showed the best agreement with the DAS28 course. Mean participation time was 350 days.
conclusionPatients were predominantly positive about online self-monitoring. They indicated that they gained more knowledge about their disease, felt less dependent on the healthcare professional and valued the insight into their long-term disease course. Barriers were mostly related to technical factors. Patients were able to and willing to self-monitor their disease, which could contribute to a more efficient allocation of outpatient consultations in the future.
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