Article Text
Abstract
Objectives Self-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.
Design Observational study using qualitative and quantitative methods.
Setting The rheumatology outpatient clinic of a teaching hospital in The Netherlands (secondary care).
Participants 47 patients with an IRD who regularly attended the outpatient clinic.
Methods Patients 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.
Results Forty-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.
Conclusion Patients 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.
- rheumatology
- qualitative research
- education & training (see medical education & training)
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Statistics from Altmetric.com
Footnotes
Contributors Study acquisition was done by PLCMvR. All authors helped in conception and design. LR obtained the ethical approval, helped in qualitative data collection and pretested the topic guide. Focus group discussion: PLCMvR functioned as moderator and LR as observer. Telephone interviews were conducted by LR. Quantitative data collection was done by PLCMvR and SAAR-vD (mainly clinical data), whereas LR obtained data derived from the self-monitoring program. Qualitative data analysis: LR was involved as one of the coders during the coding process, together with a research assistant. Provisional categorisation of themes was done by LR and AMPH. Final version of the categorisation of themes and categories was done by all the authors. Quantitative data analysis was done by all the authors. Writing: LR drafted the first version of the manuscript. PLCMvR, AMPH and SAAR-vD revised the manuscript. The final manuscript has been seen and approved by all the authors.
Funding This study was partly funded by Pfizer Medical and Educational Goods and Services.
Competing interests This study was partly funded by Pfizer (pharmaceutical company). Pfizer was able to access data available from iMonitor. Pfizer was not involved in any medical policy related to the study participants.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting or dissemination plans of this research. Refer to the Methods section for further details.
Patient consent for publication Not required.
Ethics approval The present study fulfils the Helsinki criteria and was approved by the Medical Ethical Committee of the Radboud University Medical Center Nijmegen (2016-2435) and concluded that no specific obligations were applicable to this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon reasonable request. (Anonymous) data are available upon reasonable request by contacting the corresponding author by email.