The World Health Organization describes empowerment as a process in which people can take control and make informed decisions about their life and health. Empowerment is important for people with RA since most care is provided by patients themselves.
Andersson and colleagues studied levels of empowerment and associated variables in people with RA, and investigated longitudinal clinical data in those with low and high levels of empowerment. The study involved 2837 people with RA from the BARFOT (Better Anti-Rheumatic PharmacO Therapy) cohort. Everyone was assessed according to a structured protocol at inclusion and after 3, 6, 12, 24, 60, 96, and 180 months. At each follow-up disease activity, function, and pain were assessed. In 2017, a postal survey was sent with questions about disease characteristics, lifestyle habits and the Swedish Rheumatic Disease Empowerment Scale (SWE-RES-23). The 844 patients who answered the SWE-RES-23 made up the study cohort. Differences in empowerment between groups were analysed.
Regarding lifestyle habits, there were no differences between the groups in smoking habits, diet, or drinking. Moderate physical activity for at least 150 minutes per week was reported by 27% in the lowest empowerment group versus 41% in the highest empowerment group - and vigorous physical activity of at least 60 minutes per week was reported by 22% versus 37%, respectively.
In the regression analysis, several factors were associated with low empowerment:1)being a woman; 2)pain-related factors such as higher tender joint count; 3)worse patient global assessment fatigue; 4)function, and5)quality of life. Over time, the group with low empowerment reported worse pain and function at all timepoints, worse disease activity atYear2 and 8, and a worse inflammation at 15 years follow-up compared with the high empowerment group.
An important component in effective self-management may be the use of remote management technologies. Remote management of RA using patient self-assessment of disease and patient-reported outcomes has the potential to inform timely clinical decisions on disease management, reduce burden on busy rheumatology services and promote effective self-management. In a second presentation from the 2021 EULAR congress, Ndosi and colleagues report on a study to determine the agreement between remote treatment decisions based on self-assessment questionnaires assessed blindly by a health professional, and treatment decisions based on routine outpatient monitoring appointments.
Enrolled patients continued with their usual care and clinic monitoring. In addition, they completed at home, self-assessment questionnaires at monthly intervals, including: two self-reported components which are collected as part of routine clinical practice (joint stiffness and flare), visual analogue scales for pain, global health and fatigue; and function and self-efficacy scales. Remote treatment decisions were made by an independent healthcare professional, based on the self-assessment questionnaires from the patient and information collected in the study. In this analysis, the independent blinded clinician did not have the same information as the routine hospital visit clinician (blood results and joints assessment).
The remote decisions were matched with the hospital visit decisions (within 2 weeks) and the measure of agreement between the two raters was evaluated.
A total of 72 RA patients were recruited, and there were 57 matched decisions between the independent healthcare professional and the outpatient clinician. The outpatient clinician made 7 changes to biologic and 18 non-biologic therapy changes, while the remote healthcare professional made 1 change to biologic and 17 changes to a non-biologic DMARD, including bringing in for review. The self-assessment questionnaires reported 34 RA flares of which 21 had resolved. In the matched decisions, there was only one adverse event that required treatment discontinuation, identified by both the remote and the outpatient treatment.
The authors conclude that remote RA monitoring using patient self-assessment and outcome measures is feasible with fair agreement on treatment decisions. Further work is required to understand the importance of adding blood test monitoring to remote decision making.