“You can't touch, you can't bond”: Exploring COVID‐19 pandemic impacts on rheumatoid arthritis patient goals and communication with clinicians

The rapid shift to telehealth during the COVID-19 pandemic changed how patients and clinicians interact and communicate (Srinivasan et al., 2020). Effective patient-clinician communication is essential to support shared decision making (SDM) around treatment goals. Goal concordance (or agreement) between patients and clinicians is associated with improved outcomes in chronic disease management (Heisler et al., 2003; Lafata et al., 2013) and increased medication adherence among patients with rheumatoid arthritis (RA) (Barton, Markwardt et al., 2021). Despite calls for SDM in the management of RA patients, communication is often suboptimal (Barton, Imoden et al., 2010; Barton, Markwardt et al., 2021) and patient and clinician goals can vary widely (Hulen et al., 2017). A recent study found that one in five patient-clinician dyads is discordant around the RA patient's number one goal for treatment. In the immediate phase of the pandemic, many outpatient visits for RA patients shifted from clinic to phone or video visits (George et al., 2021). Clinic staff and clinicians rapidly reorganised to minimise disruptions in care. While telehealth for RA patients during the pandemic may not be associated with variation in patient-reported outcomes like pain and general health (Gomez et al., 2021), its impacts on communication around goal concordance and SDM remain unexplored. Therefore, in this study, we examined the impacts of the pandemic and care delivery via telehealth on patient goals, patient-clinician goal communication, and management of RA using a mixed methods approach. This mixed methods study included a one-time survey of RA patients and a focus group with rheumatologists. The study was approved by the VA/OHSU Joint IRB (# e15851). Patients with RA who had a telehealth visit between March 1 and 31 July 2020 (university and Veterans Affairs patients) were invited to participate in a one-time survey via mail or phone. Rheumatology clinicians from the same university and Veterans Affairs sites were invited via email to participate in a 60-min focus group facilitated by the lead author. Patient study participants received a gift card for completion of study activities. Patient survey questions included demographics, health status, COVID-19 impacts, treatment goals, stress, communication, and optional free-text comments. Additionally, the survey measured resiliency using the Brief Resilience Scale (BRS) (Smith et al., 2008), decisional conflict, and clinician empathy using the Consultation and Relational Empathy (CARE) measure (Mercer et al., 2004). A semi-structured guide was used to direct the clinician focus group. Topics included telehealth and technology, patient treatment goals, and telehealth use. Examples of specific questions included: “What challenges did you face when using telehealth?”; “How often would your goals and your patients' goals align?”; “What was your initial reaction when you learnt that you would likely be using telehealth more often?”; and “Does the use of telehealth appear to affect your patients' communication with you?” Descriptive and bivariate analyses were conducted on survey items and qualitative content analysis was performed on free-text comments. Bivariate analyses were conducted, stratified by stress levels caused by the pandemic (moderate—high stress vs. little—no stress caused by the pandemic). Survey analyses were performed using Microsoft Excel. The transcript from the clinician focus group was analysed by a member of the research team (EH) using a framework matrix, which is a theme-based approach for pragmatic qualitative analysis (Averill, 2002). Of the 159 eligible patients invited to participate, 59 (37%) completed the survey. Patients were 71% male, 86% white, 85% Veterans, and 22% with limited health literacy. The average age of patients was 69 ± 10.5 years. Most patients (66%) ranked having less pain as their first goal followed by having fewer problems doing daily activities (34%) and avoiding medication side effects (22%) (Table 1). Over half (58%) of patients reported moderate to high stress from COVID-19. Compared with patients who experienced lower stress, those who experienced moderate to high stress reported increased decisional conflict, lower resiliency, and indicated lower levels of perceived clinician empathy. Goals stratified by stress levels showed that those with moderate to high stress more often prioritised sleep, work, and fatigue over those with low stress (Table 2). I feel as if I’m under some sort of house arrest Definitely impacting my mental health as well as the lack of socialisation Total lack of leadership and outright lies regarding COVID-19 Complications with shoulders and many flares Worry over exposure, people don’t wear masks in grocery stores Six clinicians from university and Veterans Affairs clinics participated in a one-time, 60-min group. In our analysis of focus group data, we focussed on content that could aid in understanding how a rapid shift to telehealth due to the COVID-19 pandemic impacted goal discussion and goal setting among patients and clinicians in rheumatology care (Table 3 for focus group results). However, except for discussions surrounding medications and vulnerability to COVID-19 infection, explicit conversations about patient goals have not held a central place in the patient-clinician encounter given extensive disruptions to care. Instead, clinicians described focussing on adapting to new types of patient and system-level challenges to provide safe and effective rheumatology care. Clinicians described logistical challenges to a rapid implementation of telehealth. First, the extra work generated by telehealth visits monopolised medical assistant (MA) time, while attempts to shift typical MA tasks to other healthcare personnel were unsuccessful. Clinicians pointed out that many of their patients had difficulty utilising technology to access their telehealth appointments and that the current configuration of clinical practice does not have enough time built in for staff to address this need. Next, clinicians expressed concern over insurance approval for medications requiring disease activity documentation through physical exam and lack of financial reimbursement for extra work performed, with implications for patient safety and efficacy of treatments. Clinicians also described telehealth as an impediment to forming high-quality relationships with patients primarily due to the absence of physical co-location, but also because it altered the formality of the visit, potentially undermining patient education. Lastly, as mentioned earlier, clinicians described having discussions with their patients regarding perceptions that it was unsafe to take certain medications or that having a rheumatic disease made them more vulnerable to COVID-19 infection. While this challenge is not directly related to telehealth implementation, it does represent a new challenge that clinicians must face using telehealth. RA patients with greater self-reported pandemic-related stress prioritised goals of better function and improved sleep. Previous research has shown that these types of goals may not be shared as top goals by clinicians (Barton, Markwardt et al., 2021), leading to discordance and potentially undermining SDM. Additionally, RA patient participants with higher levels of stress reported increased decisional conflict, decreased resilience, and lower levels of clinician empathy. Clinicians, on the other hand, reported that they experienced difficulties with implementing safe and effective virtual care and that this has left little room to focus on fostering high-quality relationships with patients. Some of these difficulties included adapting to a change in visit formality, increased workload, and ensuring medication safety and insurance reimbursement in the absence of a physical exam. Evaluations of pandemic telehealth implementation in other outpatient settings have documented similar challenges, in particular lack of physical examination, rapid workflow changes, and lack of personal connection in video visits that limit rapport building (George et al., 2021; Gomez et al., 2021; Srinivasan et al., 2020). Our findings indicate that patients who report greater levels of stress have different goals and may be more vulnerable to rapid changes in care delivery. Patients under increased stress reported lower levels of clinician empathy which align with focus group results showing that clinicians lacked the capacity to focus on developing relationships with patients because of pandemic-related constraints. Additionally, clinicians reported that the change in visit formality undermined patient education, creating additional challenges for goal discussion and SDM. These challenges may undermine goal concordance between patients and clinicians leading to adverse outcomes given that effective RA patient-clinician communication is integral to symptom assessment, treatment selection, and medication adherence. Considering increased patient stress levels and impediments to patient-clinician relationship building, health systems must implement telehealth-specific supports to both patients and clinicians to ensure effective communication, goal discussion, and access to high-quality care. All authors made substantial contribution to: (1) article concept and design (2) acquisition, analysis, and interpretation of data; and (3) writing and critical revision of content. All authors have approved the final version for publication. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH or the Department of Veterans Affairs. Dr. Barton's work was supported by the NIH (grant K23-AR-064372). The authors declare no conflict of interest. The study was approved by the VA/OHSU Joint IRB (#e15851). Research data are not shared.