Clinical integration of patient-reported outcome measures to enhance the care of patients with SLE: a multi-centre prospective cohort study

Abstract

Objective To assess the feasibility and impact of integrating electronic patient-reported outcome measures (PROMs) into the routine outpatient care of patients with systemic lupus erythematosus (SLE). Methods We conducted a prospective cohort study, utilizing a mixed-methods sequential explanatory design, of SLE outpatients receiving rheumatology care at two academic medical centers. Participants completed electronic PROMs at enrolment and then prior to their next two routine rheumatology visits. PROM score reports were shared with patients and rheumatologists before visits. Patients and rheumatologists completed post-visit surveys evaluating the utility of PROMs in the clinical encounters. Focus groups of patients and interviews with treating rheumatologists were conducted to further explore their experience utilizing PROMs. Results 105 SLE patients and 17 rheumatologists participated in the study. Patients completed PROMs in 159 of 184 encounters (86%), with 93% of surveys completed remotely. Patients reported PROMs were “quite a bit” or “very” useful (55% of encounters) and beneficial to communication (55% of encounters). In contrast, physicians found PROMs useful (20%) and beneficial to communication (17%) less frequently. There was no significant change in visit length, health-related quality of life, or disease activity after implementation of PROMs; however, patient satisfaction improved slightly. Qualitative analyses revealed that patients felt PROMs provided utility primarily by facilitating communication, particularly when physicians discussed the surveys. Conclusion The remote capture and integration of electronic PROMs into clinical care was feasible in a diverse cohort of SLE outpatients. PROMs were useful to patients and enhanced their clinical experience primarily by facilitating communication.

Listening to Patients With Lupus: Why Not Proactively Integrate the Internet as a Resource to Drive Improved Care?

“…Such research that uses patients’ experiences as a data source is impactful for informing care. A recent study that tested the feasibility of integrating electronically administered patient-reported outcome measures (PROMs) into the care of patients with SLE demonstrated that patients perceived this approach to be “quite a bit” or “very” useful in communicating their experiences with their clinicians a majority of the time (55% of encounters) [ 27 ]. These PROMs covered physical and nonphysical domains, such as anxiety, depression, intimate relationships, and participation in social activities.…”

“…These PROMs covered physical and nonphysical domains, such as anxiety, depression, intimate relationships, and participation in social activities. It is notable that clinicians did not find the integration of the PROMs to be as helpful (17%-20% of encounters) [ 27 ].…”

“…Although the disconnect between clinical consensus guidelines, clinician recommendations, and how patients are addressing their needs is not apparent to clinicians, the gap is very real to patients with SLE ( Figure 1 and Figure 2 ; Multimedia Appendix 1 ). Additionally, recent studies have shown that electronically captured PROMs are favored by patients and are perceived by patients as necessary for improving their care [ 27 , 49 ].…”