FormalPara Key Summary Points

Why carry out this study?

The global coronavirus 2019 (COVID-19) pandemic created challenges that may have negatively impacted people living with rheumatoid arthritis (RA), such as limited access to healthcare.

This study aimed to evaluate the impact of the COVID-19 pandemic on people living with RA, specifically on people’s behavior around the use of telemedicine/e-health, and their experience and preference in accessing healthcare across five countries.

What was learned from the study?

The results of this survey suggest that the COVID-19 pandemic negatively impacted some aspects of disease management for people living with RA and, although patients generally preferred in-person appointments, it may have had positive impacts on the utilization of virtual care.

These results have implications for healthcare policy decisions, positioning virtual care as an appropriate means for routine follow-ups, and offering patients flexibility in accessing healthcare.

Virtual care has the potential to act as an agent of health equity; however, issues with equitable access to the relevant technology need to be considered.

Introduction

Rheumatoid arthritis (RA) is a chronic autoimmune disease characterized by swelling and pain in multiple joints, and people living with RA often require long-term immunosuppressive treatment [1,2,3]. The global coronavirus 2019 (COVID-19) pandemic created challenges that may have negatively impacted people living with RA, such as a higher risk of infection compared with the general population, increased anxiety and stress, unemployment, drug shortages, and limited access to healthcare [4,5,6,7,8]. Infection control procedures implemented during the pandemic impacted the levels of in-person chronic disease healthcare services, which were subsequently deemed non-urgent in many countries [9]. Dramatic increases in telemedicine visits were observed for both urgent and non-urgent general medical care in the United States (US) [10, 11] and a survey of rheumatologic healthcare professionals residing in European Alliance of Associations for Rheumatology member countries reported that most healthcare professionals cancelled face-to-face appointments, offering alternative remote consultations during the pandemic [12].

In clinical practice, in-person management is commonly used to effectively promote well-being in people living with RA. However, high levels of patient satisfaction with rheumatologic telemedicine delivered during the pandemic have been reported in countries such as Canada, Spain, and the US [13,14,15,16], and distant approaches in RA management, such as e-health, are gaining attention post-pandemic. Digital solutions to promote health have shown promise as part of a multidisciplinary management strategy [17, 18], and can be tailored to individual needs and applied in everyday life at the individual’s convenience.

This study aimed to evaluate the impact of the COVID-19 pandemic on the management of people living with RA globally. The specific objectives of this survey were to provide insight into people’s behavior around the use of telemedicine/e-health, and their experience and preference in accessing healthcare in Brazil, Canada, France, Japan, and the US.

Methods

Study Design and Participant Population

The RA Narrative is a global initiative that is directed by an advisory panel consisting of 39 healthcare providers and patient support groups from 17 countries, which aims to elevate the important role of the patient in the management of RA [19].

The RA Narrative COVID-19 survey presented here was conducted online by The Harris Poll among people with RA who resided in Brazil, Canada, France, Japan, and the US between August 25 and September 22, 2021. The survey was conducted among people diagnosed with RA who were ≥ 18 years of age. Participants must have visited a rheumatologist/RA specialist, nurse, physician assistant/nurse practitioner (not applicable in France), or someone else at a rheumatologist/RA specialist’s office in the 3 years prior to the survey. In addition, all participants had taken medication for the treatment of RA, including a conventional synthetic disease-modifying antirheumatic drug, in the 3 years prior to the survey. In total, 100 participants were included from each country, which was the minimum recommended base to allow public discussion. All participants provided informed consent.

Patient recruitment was performed from online market research panels consisting of members who agreed to participate in this type of research. Patients provided their consent before completing the questionnaire and received modest remuneration (on behalf of the investigators by the sponsor) for their participation in the survey, such as pre-paid cards, checks, or incentivized points to be redeemed for goods. The survey was non-interventional and was not conducted as a clinical study; therefore, all patients agreed to participate but ethics approval was not required.

Survey Outcomes

The survey questions, which are listed in the electronic supplementary material, explored aspects such as the overall impact of the pandemic on disease management, healthcare access and experiences, and preferences for interactions with their doctor during the pandemic (early 2020 through the survey period).

Survey outcomes were analyzed in subgroups of people based on age (18–49 years or ≥ 50 years of age), self-identified gender (female or male), urbanicity (inner city/urban/suburban or small town/rural), employment (employed, employed full-time, employed part-time, or unemployed), whether people had ever (pre-pandemic or during the pandemic) experienced challenge(s) accessing healthcare (yes or no), and the number of flares experienced since the beginning of the pandemic in early 2020 compared with 2019/pre-pandemic (more, same, or less).

Statistical Analysis

For this global analysis, post-weighting was utilized for the global total to adjust for the relative size of each country’s adult population within the total adult population across all five countries surveyed. The raw data were not weighted at the individual country level and were, therefore, only representative of the individuals who completed the survey. The unweighted sample sizes reflect the total number of patients who completed the survey in each country. All reported percentages were calculated based on the weighted global total described above. The sampling precision of the survey was measured using a Bayesian credible interval, with an accuracy of within ± 5.3 percentage points using a 95% confidence level to the true population value for the corresponding credible interval. The credible interval for the sampling precision was wider among the subgroups of interest within the surveyed population.

Results

Participant Demographics and Subgroups

There were 500 survey participants in total: 100 each resided in Brazil, Canada, France, Japan, and the US (weighted bases following adjustment for the relative adult population size of each country: 136, 14, 46, 90, and 215, respectively). The majority of participants were 18–49 years of age (55%), female (59%), inner city/urban/suburban dwellers (80%) and employed (68%; Table 1). Most participants had ever experienced challenges accessing healthcare (67%). Self-identified race was only surveyed in Canada and the US (white: 92% and 73%, respectively).

Table 1 Participant demographics and baseline disease characteristics of the RA Narrative COVID-19 survey
Full size table

Disease Management

Aspects of RA management that were negatively impacted (either ‘a lot’ or ‘a little’) by the pandemic included ‘my emotional well-being’ (55% of participants), ‘my ability to perform daily activities’ (42%), ‘how controlled my RA symptoms are’ (34%), and ‘the expectations I have for my treatment plan’ (30%). Of the participants of this global survey, 34% experienced more flares during the pandemic (early 2020 to 2021) compared with in 2019 (pre-pandemic). The top three factors that made controlling RA symptoms more difficult during the pandemic were ‘having more anxiety and/or stress’ (49% of participants), ‘being hesitant to go into a hospital or office to receive care or treatment’ (38%), and ‘not being able to get an appointment with my doctor’ (26%). In comparison, the top three factors that made controlling RA symptoms easier were ‘having a less busy schedule’ (35% of participants), ‘working from home’ (32%), and ‘having fewer social outings’ (31%). The majority of participants strongly or somewhat agreed that they felt more isolated and alone in managing their RA during the pandemic (59%); however, the majority also agreed that they felt better at tracking their symptoms (63%) and more resilient in terms of managing their RA (57%). Looking to the future, 55% of participants agreed with the statement ‘I am worried about my ability to control my symptoms once life goes back to normal’.

Access to Healthcare Experience

In comparison to pre-pandemic, during the surveyed period of the pandemic, there was an increased reliance on digital care, such as virtual appointments (13% vs. 53% of participants reporting use before vs. during the pandemic, respectively), online patient portals (30% vs. 50%), and symptom tracking or disease management apps (19% vs. 30%). In addition, there was an increased reliance on patient support groups (19% vs. 27%). More patients who had ever experienced challenges accessing healthcare reported having virtual appointments during the pandemic than those who did not experience challenges (63% vs. 33% of participants, respectively).

Generally, participants were equally satisfied with the healthcare they received via virtual and in-person appointments, with 76% of participants being ‘satisfied’ or ‘very satisfied’ with the overall quality of care received for both appointment types (Fig. 1). However, more participants were ‘satisfied’ or ‘very satisfied’ with being physically examined for their symptoms in person than virtually (76% vs. 59%, respectively). The majority of patients were ‘satisfied’ or ‘very satisfied’ with the appointment length, the ease of making appointments and the discussions held both virtually and in person (Fig. 1).

Fig. 1
figure 1

RA Narrative COVID-19 survey: satisfaction with aspects of in-person and virtual appointments. Percentages may not sum to 100% due to weighting and/or computer rounding. aMean (standard deviation [SD]) number of in-person appointments per patient since the start of the pandemic in early 2020: 5.1 (7.6). bVirtual appointments included phone and video appointments; mean (SD) number of phone appointments per patient since the start of the pandemic in early 2020: 2.2 (6.0); video appointments: 2.5 (5.2). COVID-19 Coronavirus 2019, RA rheumatoid arthritis, SD standard deviation

Full size image

Participant Preferences for Accessing Healthcare

For the majority of the surveyed reasons for accessing healthcare, participants preferred in-person compared with virtual appointments (Fig. 2). For example, 74% of participants preferred an in-person appointment ‘when meeting with new doctor for the first time’ (15% preferred virtual), and 63% preferred an in-person appointment when attending ‘regular check-ups with the doctor I usually see for my RA’ (23% preferred virtual). However, the percentage of participants that preferred in-person versus virtual appointments for ‘when I need a refill on a prescription medication for my RA’ was similar (39% vs. 36%, respectively).

Fig. 2
figure 2

RA Narrative COVID-19 survey: participant appointment preferences. Percentages may not sum to 100% due to weighting and/or computer rounding. aMean (standard deviation [SD]) number of in-person appointments per patient since the start of the pandemic in early 2020: 5.1 (7.6). bVirtual appointments included phone and video appointments; mean (SD) number of phone appointments per patient since the start of the pandemic in early 2020: 2.2 (6.0); video appointments: 2.5 (5.2). COVID-19 Coronavirus 2019, RA rheumatoid arthritis, SD standard deviation

Full size image

Participants who had a significant preference for virtual appointments for every type were more likely to be 18–49 years of age (vs. ≥ 50 years; 21–42% vs. 8–27%, respectively) and to have ever experienced challenges accessing healthcare (vs. those who had never experienced any challenges; 20–43% vs. 5–21%, respectively). For every appointment type, those who had more flares during the pandemic (vs. the same number and less pre-pandemic; 23–43% vs. 11–31% and 13–35%, respectively), were employed (vs. unemployed; 18–41% vs. 10–25%, respectively), and were inner city/urban/suburban-dwelling (vs. small town/rural dwelling; 18–37% vs. 4–31%, respectively) were directionally more likely to prefer virtual appointments. Preferences were generally similar between male and female participants (18–39% vs. 14–34%, respectively).

Discussion

This global survey provided insight into how the COVID-19 pandemic impacted people living with RA in terms of their experience with managing their disease, accessing healthcare, and their healthcare preferences.

In this survey, participants reported that the pandemic had a negative impact on their emotional well-being and the control of their RA symptoms. Approximately half of the participants stated that increased anxiety and/or stress made controlling their RA symptoms more difficult. In addition, being hesitant to attend in-person appointments and not being able to get an appointment also caused difficulties. People with RA in Japan were reported to have increased levels of anxiety during the pandemic in comparison to pre-pandemic [20], and a study of people living in Turkey observed increased anxiety levels in people living with RA versus healthy volunteers [21]. Increased stress has been reported by people with RA living in Canada and the US to be commonly related to leaving the house and the associated worry of contracting COVID-19 [14, 22]. Further, results from two patient surveys in the US suggest that the perceived stress experienced by people with RA during the pandemic negatively impacted perceived disease activity [22, 23]. On the other hand, the results of this survey also suggest that lifestyle restrictions imposed during the pandemic, such as fewer social outings, working from home, and less busy schedules, helped people living with RA to control their symptoms, and participants were worried about symptom control in the future once life went back to normal. Consistent with these results, in a study of interview responses from 26 people with RA in Canada, some participants reported that aspects of the pandemic, such as working from home and having more free time, improved their disease management through self-care [14].

Restrictions due to the pandemic gave rise to new ways to manage RA, and this survey suggested that people living with RA increased their reliance on digital support tools such as telemedicine and the use of health apps to monitor disease activity. One potential benefit of virtual appointments is that it may be easier to share links to health apps and patient support group websites. In this survey, participants generally reported a similar level of satisfaction with in-person and virtual appointments, except when considering their doctor’s ability to physically examine their symptoms. High levels of satisfaction with telemedicine delivered during the pandemic have been reported in single-country surveys. In a single-center study of telemedicine consultations in Spain, the level of patient satisfaction was very high (8.62, based on a numeric scale where 10 = fully satisfied), with 80% of patients stating they would repeat the telemedicine consultation and 79% considering them to be useful [15]. In addition, several studies in Europe and South American countries have suggested that telemedicine and hybrid care models do not negatively impact disease activity [18, 24,25,26], and in a survey of 244 Polish people with rheumatologic diseases, 88.5% of participants thought that telemedicine should be available after the pandemic [27]. In a study in the US, patients were satisfied with virtual care and preferred virtual appointments for routine follow-up visits. However, patients preferred in-person appointments when meeting a doctor for the first time or if they had acute symptoms that they wanted to be physically assessed [16]. Nevertheless, in a systematic review of 36 studies of telemedicine in rheumatologic diseases, the majority of studies reported high levels of satisfaction [13].

The pandemic circumstances notwithstanding, the participants in this survey expressed a general preference for in-person versus virtual appointments. Those participants who preferred virtual appointments regardless of the circumstances were more likely to be 18–49 years of age, to have experienced challenges in accessing healthcare, and to be employed. Consistent with these results, a study evaluating the use of an e-health platform in the Netherlands reported that active users tended to be younger than the total population assessed [18].

While it is known that socioeconomic status, variations in access to technology, and native language can impact access to virtual care as well as patient satisfaction, in this study we were unable to specifically address these variables; this was because of the varying demographic characteristics of each market and differences in permissible data collections. In Canada and the US, where self-identification race data were collected in the survey, most participants identified as White. In a recent survey in Canada by the patient support group Arthritis Consumer Experts, people with arthritis who identified as Black, Indigenous, or a person of color, were more likely to experience difficulties accessing and using e-health, and were less likely to be satisfied with e-health compared with people who identified as white [28]. Furthermore, the need for an interpreter between the doctor and patient may negatively impact experiences with virtual care [16]. The International Telecommunication Union reported that in 2021 the internet penetration rates for those countries in our study varied from 80.7% to 92.8%, with Canada having the highest penetration rate and Brazil having the lowest rate [29]. Our survey may have captured a higher-income, younger, and more urban/suburban sample than within the general population, based on factors that are reported to impact internet usage across the world [30]. Further research on the issue of inequity is required to help guide e-health policies.

Strengths of our study include the fact that the survey provides a global viewpoint in comparison to other surveys published to date, which reported local data. However, the survey will have been affected by the country and political decisions related to the pandemic, and adherence to those policies during the survey period (August 25–September 22, 2021), as well as by the presence or absence of a wave of infections at the time of the survey. Stay-at-home measures in the individual countries included in this analysis varied during the study period and throughout the pandemic [31], which may have also influenced the results. In addition, the results within each country may have been impacted by state/province-specific rules. In the US, state telehealth licensing rules, which state a prescriber must be licensed in the state in which a patient resides, were waived by nearly all states during the pandemic, facilitating easier access to virtual care, but the duration of these waivers varied by state [32, 33]. As such, global findings may not be applicable to all countries/states/provinces due to factors such as differences in health systems, access to treatments, cultural variations, vaccination rates, and infection control protocols. All sample surveys and polls, whether or not they use probability sampling, are subject to multiple sources of error that are most often not possible to quantify or estimate, including, but not limited to, coverage error, error associated with nonresponse, error associated with question wording and response options (e.g., adequate participant understanding), accurate recall, and post-survey weighting and adjustments. Finally, no clinical disease activity assessments were performed and so recruitment was based upon self-diagnosis of RA, and participation was limited to those with internet access, which is a potential source of bias in the sample.

Conclusions

This survey suggests that the COVID-19 pandemic did negatively impact varying aspects of life with RA, particularly participants’ emotional well-being and the control of their RA symptoms. One positive impact was the increased utilization of virtual care by people living with RA. Although participants were satisfied with virtual appointments, most still generally preferred in-person appointments, particularly when experiencing an acute flare or meeting a new doctor. These results have implications for healthcare policy decisions, positioning virtual care as an appropriate means for routine follow-ups and offering patients flexibility in accessing healthcare. Finally, virtual care has the potential to act as an agent of health equity; however, issues with equitable access to the relevant technology need to be considered.