PMID- 32819925 OWN - NLM STAT- MEDLINE DCOM- 20210514 LR - 20210514 IS - 2044-6055 (Electronic) IS - 2044-6055 (Linking) VI - 10 IP - 8 DP - 2020 Aug 20 TI - 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. PG - e033321 LID - 10.1136/bmjopen-2019-033321 [doi] LID - e033321 AB - 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. CI - (c) Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. FAU - Renskers, Lisanne AU - Renskers L AUID- ORCID: 0000-0003-1413-1629 AD - IQ Healthcare, Radboudumc, Nijmegen, Gelderland, The Netherlands Lisanne.Renskers@radboudumc.nl. FAU - Rongen-van Dartel, Sanne Aa AU - Rongen-van Dartel SA AD - IQ Healthcare, Radboudumc, Nijmegen, Gelderland, The Netherlands. AD - Rheumatology, Bernhoven Hospital Location Uden, Uden, Noord-Brabant, The Netherlands. FAU - Huis, Anita Mp AU - Huis AM AD - IQ Healthcare, Radboudumc, Nijmegen, Gelderland, The Netherlands. FAU - van Riel, Piet Lcm AU - van Riel PL AD - IQ Healthcare, Radboudumc, Nijmegen, Gelderland, The Netherlands. AD - Rheumatology, Bernhoven Hospital Location Uden, Uden, Noord-Brabant, The Netherlands. LA - eng PT - Journal Article PT - Observational Study PT - Research Support, Non-U.S. Gov't DEP - 20200820 PL - England TA - BMJ Open JT - BMJ open JID - 101552874 SB - IM MH - Ambulatory Care Facilities MH - *Arthritis, Rheumatoid/therapy MH - Humans MH - Netherlands MH - Pilot Projects MH - *Rheumatology PMC - PMC7440711 OTO - NOTNLM OT - education & training (see medical education & training) OT - qualitative research OT - rheumatology COIS- 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. EDAT- 2020/08/21 06:00 MHDA- 2021/05/15 06:00 PMCR- 2020/08/20 CRDT- 2020/08/22 06:00 PHST- 2020/08/22 06:00 [entrez] PHST- 2020/08/21 06:00 [pubmed] PHST- 2021/05/15 06:00 [medline] PHST- 2020/08/20 00:00 [pmc-release] AID - bmjopen-2019-033321 [pii] AID - 10.1136/bmjopen-2019-033321 [doi] PST - epublish SO - BMJ Open. 2020 Aug 20;10(8):e033321. doi: 10.1136/bmjopen-2019-033321.