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Background/Aims COVID-19 challenged traditional care models and necessitated introduction of remote consultations. We wanted to understand the experiences of people with rheumatoid arthritis (RA)/adult juvenile idiopathic arthritis (AJIA) on accessing healthcare remotely, and how well people understood their condition and treatment. Methods This collaborative work between the National Rheumatoid Arthritis Society (NRAS) and clinicians in Oxford led to the development of an electronic questionnaire that was disseminated in July 2021 for four weeks through e-newsletters and all NRAS social media platforms. Those living in the UK with RA and AJIA aged 18 and over were eligible. Analyses of data were performed in Microsoft Excel and IBM SPSSv28. Results We analysed 316 responses. There was a middle-aged (ages 46 to 54, 54.1%, n=171), Caucasian (97.5%, n=306), female (92.4%, n=292) preponderance. Most had RA (93%, n=294) followed by another inflammatory arthritis (4.1%, n=13) and AJIA (2.8%, n=9). The majority had their condition for >10 years (43.4%, n=137) but some were diagnosed <12 months ago (3.2%, n=10). Two thirds of participants (66.5%, n=210) did not know their DAS28 score. Of the remaining third, the most commonly reported measure was moderate disease activity (12%, n=38). Those with higher self-reported DAS28 scores were using analgesia more regularly (p<0.01) but we found no difference in NSAID, DMARD or steroid use. Age did not influence steroid usage (p=0.35), but those who had their condition for longer used more steroids and regular analgesia. Only 33.9% (n=107) of responders felt their condition had been managed adequately in the pandemic, with more reporting poor status (40.8%, n=129) rather than good (16.8%, n=53). Those living in the South of England reported statistically better disease control than those from the North, despite having more virtual assessments (p=0.02). Travelling and fear of Covid appeared more important than consultation skills. Just over a fifth (20.3%, n=64) felt greater focus should be given to patient concerns. Of the 9.1% of patients (n=29) with a new diagnosis made during the pandemic, 24.1% (n=7) unable to book a GP appointment easily. Patients experienced a median symptom time of 4-10 weeks before consulting GPs. Once assessed, 31% (n=9) were referred immediately while the median time was 4-8 weeks. We found 58.6% (n=17) of patients received their diagnosis within their initial rheumatology consultation and 76.5% (n=13) of these started a DMARD immediately. Conclusion Despite a greater emphasis on patient education and PROMs influencing clinical decision-making, it is staggering that two-thirds did not know their DAS28 score. Analgesia and steroid use were common in patients with well-established disease which remains a concern. Accessing appointments was a significant barrier to patients and delays in care were experienced at every step in the NHS management pathways. Remote consultations need greater emphasis on patient concerns.
ABSTRACT
Background: The COVID-19 pandemic has generated uncertainties and concerns along with expectations and hopes that may be of relevance to patients with rheumatic diseases. Objectives: The aim of this study is to assess changes in the fears and hopes of patients with rheumatic diseases throughout the two phases of REUMAVID. Methods: REUMAVID is an international cross-sectional study collecting data through an online survey in seven European countries led by the Health & Territory Research group of the University of Seville, together with a multidisciplinary team including patient representatives, rheumatologists, and health researchers. Data were collected in two phases: Phase 1 (P1) between April-July 2020 and Phase 2 (P2) between February-April 2021. Demographics, health behaviours, employment status, access to healthcare services, disease characteristics, WHO-5 Well-Being Index and Hospital Anxiety and Depression Scale (HADS). Participants rated a series of fears (infection, medication consequences, lack of medication, impact on healthcare, lost job, civil disorder) on a scale from zero ('no concern at all') to five ('extremely concerned') and hopes (treatment/vaccine availability, going outside, travel, economic situation, treatment continuation, health status) on a scale from zero ('no hopeful at all') to five ('extremely hopeful'). Descriptive analysis and Mann-Whitney test were used to explore fears and hopes in both phases of REUMAVID. Results: A total of 3,802 participants were recruited across both phases in REU-MAVID with comparable demographic characteristics: mean age 52.6 (P1) vs. 55.0 years (P2), 80.2% female (P1) vs. 83.7% (P2), 69.6% married (P1) vs. 68.3% (P2), and 48.6% university educated (P1) vs. 47.8% (P2). Most prevalent RMD was axial spondyloarthritis in P1 (37.2%), and rheumatoid arthritis in P2 (53.1%). In P1 and P2 the major concern was the impact on healthcare in the future (3.1 and 3.2 out of 5, p=0.051). Compared to P1, patients in P2 had less fears about RMD medications not reaching the country (2.4 vs. 1.9, p<0.001), civil disorders (2.0 vs. 1.8, p=0.001), or losing their jobs (1.4 vs. 1.5, p=0.003). Comparing hopes with P1, patients in P2 had greater hopes about availability of treatments or vaccines suitable for COVID-19 (3.2 vs. 3.9, p<0.001), to be able to go out as before the pandemic (3.1 vs. 3.5, p<0.001), to be able to travel as before the pandemic (2.8 vs. 3.3, p<0.001), maintain and even improve the current economic situation after the pandemic (2.6 vs. 3.0, p<0.001), and to be able to continue their treatment as usual (3.8 vs. 3.8, p=0.049;Table 1) Conclusion: During the frst phase of REUMAVID at the beginning of the pandemic, patients with RMDs were more fearful and less hopeful compared to the second phase. These fears were notable in terms of lack of medication for their RMD, while during the second phase, patients were hopeful of a treatment or vaccine against COVID-19, and of being able to go out and travel as before.
ABSTRACT
Background: The COVID-19 pandemic has impacted health, lifestyle, treatment and healthcare of European patients with rheumatic and musculoskeletal diseases (RMDs). Objectives: The aim is to evaluate gender differences on the impact of the first wave of the COVID-19 pandemic in the wellbeing, life habits, treatment, and healthcare access of European patients with RMDs. Methods: REUMAVID is an international collaboration led by the Health & Territory Research at the University of Seville, together with a multidisciplinary team including patient organisations and rheumatologists. This cross-sectional study consisting of an online survey gathering data from 1,800 patients with a diagnosis of 15 RMDs, recruited by patient organisations in Cyprus, France, Greece, Italy, Portugal, Spain, and the United Kingdom during the first phase of the pandemic (April-July 2020). Mann-Whitney and χ2 tests were used to analyse differences between gender regarding sociodemographic characteristics, life style, treatment, healthcare, and patient-reported outcomes. Results: 1,797 patients were included in this analysis. 80.2% were female and a mean age of 52.6 years. The most common diagnosis was inflammatory arthritis (81.7% male vs 73.8% female). There was a higher prevalence of fibromyalgia among females (20% vs 7.0% male). Overall, females reported worse self-perceived health (67.0% vs 51.4%, p<0.001), higher risk of anxiety (59.5% vs 48.1%, p<0.001), and depression (48.0% vs 37.2%, p<0.001). Females reported a greater increase in smoking (26.5% vs 17.5%, p=0.001), although they were less likely to drink alcohol (34.5% vs 25.4%, p=0.013), and also engaged less in physical activity (53.0% vs 60.3%, p=0.045). Overall, females were more likely to keep their scheduled rheumatology appointment (43.3% vs 34.1% of males (p=0.049;Table 1) with a higher proportion of females having their rheumatic treatment changed (17.0% vs 10.7%, p=0.005). Conclusion: The first wave of the COVID-19 pandemic and the containment measures have worsened self-perceived health status of patients with RMDs, affecting genders differently. Females reported worse psychological health and life habits such as increased smoking and reduced physical activity, while males increased their alcohol consumption and were less likely to attend their rheumatology appointments.
ABSTRACT
Background: The first wave of the COVID-19 pandemic led to a rapidly evolving global crisis characterized by major uncertainty. Objectives: The objective is to assess COVID-19-related fears and hopes in patients with rheumatic and musculoskeletal diseases (RMDs) during the first wave of the pandemic. Methods: REUMAVID is an international collaboration led by the Health & Territory Research group at the University of Seville, together with a multidisciplinary team including patient organisations and rheumatologists. This cross-sectional study consisting of an online survey gathering data from 1,800 patients with a diagnosis of 15 RMDs recruited by patient organisations in Cyprus, France, Greece, Italy, Portugal, Spain and, the United Kingdom. Data are collected in two phases, the first phase between April and July 2020, the second in 2021. Participants rated a series of fears (infection, medication consequences, lack of medication, impact on healthcare, job loss, civil disorder) on a Likert scale from zero (no concern at all) to five (extremely concerned) and their hopes (treatment/vaccine availability, going outside, travel, economic situation, treatment continuation, health status) on a Likert scale from zero (not hopeful at all) to five (extremely hopeful). The Mann-Whitney and Kruskal-Wallis tests were used to analyse the different fears and hopes according to socio-demographics characteristics, disease and health status. Results: 1,800 patients participated in the first phase of REUMAVID. The most frequent RMDs group was inflammatory arthritis (75.4%), the mean age was 52.6 years and 80.1% were female. The most important fear for patients was the impact of the COVID-19 pandemic on healthcare (3.1 out of 5), particularly for those younger in age (3.0 vs 3.2, p=0.004), female gender (3.2 vs 2. 9 of men, p=0.003), experiencing greater pain (3.1 vs 2.8, p=0.007), with higher risk of anxiety (3.3 vs 2.9 of without anxiety, p<0.001) and depression (3.3 vs 2.9 without depression, p<0.001). The possible impact of anti-rheumatic medication and the development of severe disease if they became infected with COVID-19,was mostly feared (2.8 out of 5), by those receiving biological therapy (3.1 vs 2.5 not biological therapy, p<0.001) or those with underlying anxiety (2.9 vs 2.6 without anxiety, p=0.007). The risk of contracting COVID-19 due to their condition (2.8 out of 5), was especially feared by those with vasculitis (3.2 out of 5), who were female (2.9 vs 2.5, p<0.001), using biologics (2. 9 vs 2.7 of no use, p=0.003), in greater pain (2.8 vs 2.4, p<0.001), with a risk of anxiety (3.0 vs 2.6 without anxiety, p=0.004), and risk of depression (3.0 vs 2.6 without depression, p<0.001). The major hopes were to be able to continue with their treatment as usual (3.7 out of 5), particularly for those taking biologics (3.8 vs 3.6 not taking, p=0.026), those with a better well-being (3.8 vs 3.6 with worse well-being, p=0.021), without anxiety (3.8 vs 3.6 at risk, p=0.004) and without depression (3.8 vs 3.6 at risk, p=0.007). Hoping not to become infected with COVID-19 and to maintain the same health status, were especially those who were older (3.6 vs 3.4 p=0.018) without anxiety (3.4 vs 3.6 at risk, p=0.005), and without depression (3.6 vs 3.4 at risk, p=0.006). Another important hope was the availability of a treatment or vaccine for COVID-19, which was important for patients experiencing better well-being (3.3 vs 3.0 with worse well-being, p<0.001;Figure 1). Conclusion: The outstanding COVID-19-related fear expressed by European patients with RMDs was its impact on healthcare, while the greatest hope was to be able to continue treatment. Younger patients reported more fears while older patients were more hopeful. Those receiving biologics had greater fears and hopes associated with their treatment. In addition, patients at risk of mental disorders presented greater fears and less hopes.
ABSTRACT
Background: The COVID-19 pandemic has impacted the wellbeing of patients with Rheumatic and Musculoskeletal Diseases (RMDs). Objectives: The aim is to assess emotional well-being and its associated factors in patients with RMDs during the first wave of the COVID-19 pandemic. Methods: REUMAVID is an international collaboration led by the Health & Territory Research group at the University of Seville, together with a multidisciplinary team including patient organisations and rheumatologists. This cross-sectional study consisting of an online survey gathering data from patients with a diagnosis of 15 RMDs in Cyprus, France, Greece, Italy, Portugal, Spain, and the United Kingdom. 1,800 participants were recruited by patient organisations. Data was collected between April and July 2020. Participants were divided into two groups: 1) Participants with poor wellbeing (World Health Organization-Five Wellbeing Index (WHO-5) ≤ 50), 2) Participants with good wellbeing (WHO-5 ≥50). The Mann-Whitney and χ2 tests were used to analyse possible relations between sociodemographic characteristics, lifestyle, and outdoor contact with wellbeing during the first wave of the COVID-19 pandemic. Univariate and multivariate binary logistic regression was used to determine the impact of the independent variables associated with poor wellbeing. Results: 1,777 patients with 15 different RMDs were included. The mean age was 52.7, 80.2% female, 48.7% had a university degree, and 69.7% were married or in a relationship. The most frequent diagnoses were inflammatory arthritis (75.4%). 49.0% reported poor wellbeing. 57.7% of patients who belonged to a patient organisation reported good wellbeing (vs 46.3% who did not, p<0.001). Those who reported poor wellbeing had higher disease activity (51.4% vs 41.3%, p<0.001), a higher risk of anxiety (54.3% vs 41.7%, p<0.001) and depression (57.0% vs 42.1%, p<0.001), and poorer self-perceived health (53.0% vs 41.8%, p<0.001), compared to those who did not. A higher proportion of those who engaged in physical activity presented good wellbeing (54.0% vs 46.5%, p=0.012). 57.4% of the patients who were unable to attend their appointment with their rheumatologist reported poor wellbeing, compared to 48.2% who did attend (p=0.027). Patients who did not walk outside (56.2%) or who lacked elements in their home to facilitate outside contact (63.3%) experienced poor wellbeing (p<0.001). The factors associated with poor wellbeing were lack of elements in the home enabling contact with the outside world (OR=2.10), not belonging to a patient organisation (OR=1.51), risk of depression (OR=1.49), and not walking outside (OR=1.36) during the COVID-19 pandemic (Table 1). Conclusion: Almost half of the patients with RMDs reported poor emotional wellbeing during the first wave of the COVID-19 pandemic. The lack of elements in the home that facilitate outdoor contact, not belonging to a patient organisation, the presence of anxiety, and not walking outside during the pandemic increase the probability of poor emotional well-being. These results highlight the importance of environmental factors and the role of patient organisations in addressing the effects of the pandemic and its containment measures.
ABSTRACT
Background: The COVID-19 pandemic has impacted every aspect of life of European patients with rheumatic and musculoskeletal diseases (RMDs). Objectives: The aim is to evaluate country differences on the impact of the first wave of the COVID-19 pandemic on life habits, healthcare access, health status, mental health and wellbeing in European patients with RMDs. Methods: REUMAVID is an international collaboration led by the Health & Territory Research group at the University of Seville, together with a multidisciplinary team including patient organisations and rheumatologists. This cross-sectional study consisting of an online survey gathering data from patients with a diagnosis of 15 RMDs in Cyprus, France, Greece, Italy, Portugal, Spain, and the United Kingdom. Participants were recruited by patient organisations (April-July 2020). The Kruskal-Wallis and χ2 tests were used to analyse differences between countries and independent variables. Results: 1,800 patients participated in the first wave of the COVID-19 pandemic (REUMAVID). 37.8% of Spanish patients increased their smoking consumption during the pandemic followed by Cyprus (32.1%) and Portugal (31.0%), while alcohol consumption was higher in the UK (36.3%) and France (27.0%). 82.3% of patients in Spain unable to attend their appointment with their rheumatologist, either due to cancellations or other personal reasons. Access to primary care was most limited in Portugal and Italy, where only 45.0% and 51.6% got access. 61.9% in Italy and 53.3% in Spain experienced a worsening of their health during the pandemic. 68.5% in Spain and 67.8% in Portugal were at risk of anxiety. The highest proportion at risk of depression was found in Greece (55.4%), Cyprus (55.1%), and Italy (54.8%). 66.9% of patients in Spain reported poor wellbeing, compared to 23.8% in Italy and 30.1% in Portugal (Table 1). Conclusion: The first wave of the pandemic and the related containment measures heterogeneously affected patients with RMDs across European countries, who overall increased harmful habits, experienced more difficulties in accessing healthcare and, reported poor mental health and well-being.
ABSTRACT
Background/AimsThis study presents the impact of the COVID-19 pandemic on healthcare, access to treatment, daily activities, well-being and mental health and the role of patient organisations from the perspective of the patientwith rheumatic disease in the UK.MethodsREUMAVID is an international collaboration led by HTR of the University ofSeville, together with a multidisciplinary team of rheumatologists andpatient organisations from 7 European countries (in the UK: NASS, NRASand Arthritis Action). The study consists of an online survey, including thefollowing instruments: Self-Perceived Health, WHO-5 Well-Being Indexand Hospital Anxiety and Depression Scale (HADS). Data are collected intwo phases: the first wave of the pandemic (from May 14th to July 18th2020) and the second wave (to be conducted in winter 2020).Results558 patients with rheumatic diseases participated in REUMAVID UK.The most frequently reported diagnoses were axial spondyloarthritis(44.6%), rheumatoid arthritis (44.1%) and osteoarthritis (25.6%). Themean age was 58.513.4 years, 78.7% women, 70.8% married or in arelationship and 54.1% having university studies. 45.8% perceivedtheir health status being "fair to very poor" with 38.4% reporting aworsening during lockdown. 48.8% had their rheumatology appointment cancelled. Of these, 46.9% were offered either online ortelephone follow-up, while the remaining 50.6% were not given anyalternative. 15.6% changed their medication, of which 66.3% wereindicated to do so by the medical team and 21.7% did so out ofconcern with COVID-19 with the major fear being that their treatmentwould lead to serious illness if they contracted SARS-CoV-2, while thegreater hope was to be able to continue with their treatment as usual.10.3% smoked more than before, 59.4% quit smoking and 36.3%drank more alcohol than before. 20.7% were unable to physicallyexercise at home and 39.2% reported weight gain. According to theWHO-5 scale, 52.5% declared poor well-being (-50). A total of 43.6%were at risk of anxiety and 33.6% at risk of depression according tothe HADS scale. During the lockdown, 54.3% were able to continuetheir psychological therapy. The main source of COVID-19 informationwas the patient organisations (reaching 63.6% of members), compared to 45.3% of non-members who did not receive any information.ConclusionThe REUMAVID study has allowed us to measure and quantify theexperience of British patients with rheumatic disease during anunprecedented public health crisis. A reduction in healthcare access, concern about treatment, changes in daily life habits and worsening ofwell-being and mental health were reported during the first wave.Patient organisations were the main source of COVID-19-relatedinformation. Further data will be gathered during the second wave.