ABSTRACT
Background: Patients with infammatory rheumatic diseases (IRD) have used self-isolation and social distancing during the pandemic to avoid SARS-CoV-19 infection (reference). In countries with unlimited and free access to SARS-CoV-19 testing, anxiety or other patient related factors might potentially increase test-frequency. Objectives: In patients with IRD followed in the nationwide DANBIO registry we aimed to explore clinical factors including self-isolation associated with a) a positive SARS-CoV-19 test result ('infection'), b) higher frequency of SARS-CoV-19 testing during the frst 1/ year of the pandemic. Methods: In May-June 2020, IRD patients followed in the quality registry, DANBIO (n=36,152), were invited to participate in the voluntary online questionnaire survey 'You and your rheumatic disease during times with corona-virus'. Patient characteristics, treatment and patient reported outcomes were captured in DANBIO and from the questionnaire. Patients were considered as self-isolating if they agreed to the question: I stay at home and avoid others as much as possible. After written consent, information on dates and SARS-CoV-19 test results (by PCR, polymerase chain reaction) during follow-up (until Nov 2021 and thus before entry of the Omicron variant) was obtained through linkage to the nationwide laboratory system. Time to frst positive PCR and associated characteristics were explored by multivariable Cox regression analyses with hazard ratios, HR, adjusted for: gender/age-group/diagnosis/biologic therapy/working/self-isolation/HAQ/EQ-5D. Day 0 was defned as the date of frst positive test in cohort (May-07-2020). Number of SARS-CoV-19 tests (median (IQR)), and characteristics associated with higher test frequency (upper quartile) was explored with multivariable logistic regression analyses (odds ratios, OR, adjustment like above). Results: In 10,098 included patients, 2.8% were infected during follow-up (Table 1). Age and HAQ seemed lower in infected (Table 1, Figure 1). In multivariable Cox regression analyses, male gender was associated with higher infection risk (HR 1.38 (1.05;1.80) whereas risk was lower in the age-group 61-80 years (0.60 (0.39;0.92) vs. below 40 years). Other factors were statistically insignifcant. Median number of PCR tests was 4 (IQR 1-9). In patients with <9 tests, 2.6% were infected whereas for patients with ≥9 tests, 3.2% were infected. Patients with ≥9 tests were younger, more frequently female and working in univariate (Table 1) and adjusted analyses, whereas other characteristics were statistically insignifcant (details not shown). Conclusion: Few patients with IRD were infected during the frst 1/ years of the pandemic. Gender and age were associated with infection risk and frequency of testing. Self-isolation and a range of other clinical characteristics had no impact, which to some extent may be due to behavioral differences across age-groups.
ABSTRACT
Background: Digital solutions for online monitoring of chronic diseases are increasingly implemented in health care, but not all patients might have access, skills, or interest in using them. Fueled by the COVID-19 pandemic and the urgent need for remote consultations, an online website to enter patient-reported outcomes (PROs) from home (DANBIO-from-home, https://danbio.dk) was implemented on May 15th 2020 for patients with infammatory rheumatic diseases (IRD) followed in the Danish nationwide DANBIO registry. Objectives: To explore the use of DANBIO-from-home during the frst 1/year after launching, with focus on a) characteristics of patients who did versus who did not access the webpage, and b) impact of patient age on time to frst entry. Methods: DANBIO-from-home allows PROs to be entered remotely by computer, tablet, or smartphone after secure log-on. All patients followed in DANBIO were informed about this option by invitations sent through eBoks, a national infrastructure for electronic communication, available to 80-90% of Danish citizens. Patients were encouraged to access DANBIO-from-home before planned rheumatology consultations, or when participating in the voluntary questionnaire survey 'You and your rheumatic disease during times with corona-virus' (on three occasions: May 2020, Nov 2020, June 2021) (ref). Follow-up ended Dec 1st 2021. Characteristics of patients who did/did not access DANBIO-from-home during follow-up are explored by multivariable logistic regression analyses adjusted by clinical factors (gender/age-group/diagnosis/disease duration/use of biologics/HAQ/PASS). Time to frst entry of PRO using DANBIO-from-home is presented as cumulative incidence curves by age group. Results: Among 33,776 patients with infammatory rheumatic diseases followed in DANBIO, 68% used DANBIO-from-home at least once during follow-up (Table 1). Patients who used the system were less frequently below 40 years or above 80 years old, more frequently biologically treated and had lower HAQ-score than patients who did not use it. In logistic regression analyses, factors associated with DANBIO-from-home access were: female gender (odds ratio, OR 1. 2 (1.1;1.3)), age group 40-60 (1.8 (1.6;2.0)) or 61-80 yrs (1.9 (1.7;2.19) and not age >80 yrs (0.6 (0.5;0.7) with age <40 as the reference), biologic treatment (1.4 (1.3;1.5)), higher HAQ (1.3 (0.3;1.4)), scoring PASS 'no' (1.1 (1.02;1.2)) (all p <0.001), whereas disease duration and diagnosis had no impact. Time to frst entry was longest in in patients >80 yrs followed by the <40 yrs group. For all age-groups, and most pronounced for age <40 yrs, the use increased when invitations to questionnaire surveys were sent out. (Figure 1) Conclusion: A web-based system for secure remote entry of PROs was well-received after a nationwide launch. Patient-related factors had a substantial impact on the use. Lower use in the elderly might indicate lack of technical skills or facilities, whereas low use in younger age groups, which improved over time, is likely driven by other factors. Further analyses are planned to explore if lack of use impacts treatment outcomes.
ABSTRACT
Background: During COVID-19 related lockdowns, physical attendance may be replaced by remote (by telephone, email, video consultations in patients with infammatory rheumatic diseases (IRD). During re-opening of society, reallocation of health-care resources could potentially cause persistent changes in access to physical consultations. Objectives: To explore use of remote consultations in patients with IRD followed in the nationwide DANBIO registry at three time points (lockdown from spring 2020 followed by gradual reopening of society) during the COVID-19 pandemic. Furthermore, to explore satisfaction with treatment access, and preferred mode of consultation including potentially associated clinical factors. Methods: We performed a nationwide survey where three times, an online questionnaire (Q) 'Yo u and your arthritis in times of COVID-19' with questions regarding use of and access to remote and physical consultations was sent to all patients in DANBIO (Q1: March-April 2020, Q2: November 2020, Q3: May 2021). (ref) Patient characteristics were captured in DANBIO (gender/age/diagnosis/biological therapy) and from the questionnaire (work status/comorbidities/EQ-5D). Use of physical and/or remote consultations 0-3 months before surveys and satisfaction with access was identifed. Clinical factors associated with a preference for physical consultations at time of Q3 (versus remote contact (telephone/e-mail/video)) were explored with multivariable logistic regression analysis. Results: Totally, 12,789/14,755/13,921 patients responded to Q1/Q2/Q3, respectively, with 23,311 unique patients participating in at least one survey. Characteristics of patients responding to Q3 are shown in Table 1. During the preceding 3 months, proportions of patients with physical/remote consultations were 22%/45%, 41%/38%, 40%/39% for Q1, Q2, Q3, respectively. Remote consultations were mainly by telephone, whereas email (<5%) and video (<1%) were rarely used. In all three surveys, only 7% of respondents found that access to counseling with their rheumatologist had deteriorated during the pandemic (Figure 1A) whereas the majority found it to be unchanged or did not know. The preferred contact form was physical consultations (68-74%, Figure 1B, not available for Q1). Factors associated with preference for physical consultation were female gender, higher age (>60 years), biological treatment, low EQ-5D and not having axial spondyloarthritis, whereas work status and comorbidities were without signifcance (logistic regression analyses, details not shown). Conclusion: Despite a widespread use of remote consultations during the pandemic, nationwide questionnaire surveys performed at three time-points during the COVID-19 pandemic showed that most patients were satisfed with access to rheumatic counseling. Nevertheless, in-person contacts were preferred by most patients, mainly women and elderly.
ABSTRACT
Background: The COVID-19 pandemic has caused lockdown, reduced access to face-to-face consultations, anxiety about taking immunosuppressive agents and self-isolation1 which potentially impact rheumatic disease control negatively. However, changes in behavior including self-protection strategies during the ongoing pandemic and impact on rheumatic disease activity have only been scarcely described. The first COVID-19 wave hit Denmark in March 2020 followed by a gradual re-opening from mid-April and the second surge began in the late autumn of 2020. Objectives: To describe changes over time in self-protection strategies and health behavior during the first 8 months of the COVID-19 pandemic and to explore impact on self-reported disease activity and quality of life (=patient reported outcomes, PROs) in patients with inflammatory rheumatic disease (IRD) in DANBIO. Methods: Patients were invited to answer two on-line questionnaires regarding current behavior and disease specific PROs: One in June 2020 (including also questions regarding behavior in March 2020), and one in November 2020. Responses were linked to PROs collected as part of routine care before March 2020 (=Before) in DANBIO. For each PRO, changes (=delta values) between the two timepoints were calculated in individual patients. Results: Overall, 7,836 patients (22% of eligible patients) answered both questionnaires and were included (rheumatoid arthritis(RA): 5270(67%), psoriatic arthritis(PsA): 1217(15%), axial spondyloarthritis(AxSpA): 932(12%), other IRD: 417(5%). Patients reported highest levels of anxiety and self-protection in March with an improvement in June that was largely unchanged in November (Figure 1), e.g. proportions staying at home avoiding others as much as possible (completely or mostly agree) were 87%/49%/51% in March/June/November, respectively (Figure 1, Panel C). Disease activity and proportions of patients reporting acceptable symptom state remained stable at the three time points (Table 1), with all median delta values being close to zero (not shown). Conclusion: In this large cohort of patients with inflammatory rheumatic diseases followed in the nationwide DANBIO registry, COVID-19 related self-protection strategies were highest in March 2020, but more than half of the patients also reported self-isolation in June and November. We found no negative impact of the pandemic on patient-reported outcomes, which remained largely unchanged and were similar to before the pandemic. The latter finding probably reflects that few patients reduced or withdrew from treatment due to fear of COVID-191.
ABSTRACT
Background: During the COVID-19 pandemic, widespread changes in how we work have been observed. Working from home is not an option for everyone. At work it may be difficult to keep social distance, which may lead to fear and anxiety of being infected with SARS-CoV-19 or of spreading the virus. Objectives: To explore frequency of anxiety and concerns related to work in patients with inflammatory rheumatic diseases(IRD) during the COVID-19 pandemic and to identify patient and disease characteristics associated with increased anxiety. Methods: Patients in routine care followed in the nationwide Danish DANBIO registry were invited to answer an on-line questionnaire regarding current rheumatic disease activity, behavior and anxiety including current work-status and -concerns. Responses were linked to patient data previously recorded in DANBIO. Clinical factors associated with work-related concerns (completely/mostly agree versus neither/nor, completely/mostly disagree) were explored with multivariable logistic regression. Results: Among 14,758 respondents (38% of eligible patients), 5,950 patients (40%) were currently working (60% full time/31% part time/9% self-employed) (61% female, 53% rheumatoid arthritis/19% psoriatic arthritis/ 20% axial spondyloarthritis/9% other). Although 68% reported that the workplace helped to make necessary interventions, work-related concerns and anxiety were frequent. Thus, 22% found it difficult (completely/mostly agree) to keep physical distance at work and 20% were worried about going to work (Figure 1). Factors associated with concerns about going to work were female gender, longer education, other chronic conditions, biological therapy, and higher (=poorer) EQ-5D, whereas diagnosis was without significance. Similar patterns were found for other work-related concerns (not shown). Conclusion: In this cohort of >5,000 patients with inflammatory rheumatic diseases followed in a nationwide registry, during the COVID-19 pandemic anxiety and concerns related to the work situation were frequent, especially in women and patients treated with biologicals, with other chronic diseases and with poor quality of life.