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  • 1
    In: Rheumatology Advances in Practice, Oxford University Press (OUP), Vol. 6, No. Supplement_1 ( 2022-09-26)
    Abstract: During the COVID-19 (coronavirus) pandemic, some provision of healthcare shifted to remote, technology-assisted appointments (telemedicine). Whilst parents/carers of children and young people with rheumatic conditions have reported benefits of telemedicine, concerns remain. This patient and parent-led project sought to understand the views of parents/carers about telemedicine, identifying the benefits and limitations of remote technology-assisted appointments, and comparing views between Canadian and European cohorts. Description/Method An online survey was developed, translated into multiple languages and shared via social media and patient organisations, targeted at parents of children and young people with rheumatic, autoimmune and autoinflammatory conditions. Fieldwork took place in April 2021 in Europe and May 2021 in Canada. Consent was provided during enrolment. Discussion/Results A total of 290 responses were received (133 Europe; 157 Canada; 73% female, median age 12). Over half of respondents (53%) in Europe reported travelling over an hour to in-person appointments with their paediatric rheumatologist, compared to a significantly higher proportion of respondents in Canada (87%). Consequently, in-person appointments represent a greater time burden amongst Canadian caregivers, though both groups report appointments taking over three hours in total (51% Europe, 69% Canada). Prior to COVID-19, most had never had a telemedicine appointment (92% Europe, 95% Canada). Since March 2020, the majority (71% Europe, 82% Canada) had at least one telemedicine appointment. Table 1 shows the scores (1 worst, 5 best) given by parents about their telemedicine experience. Overall, most aspects scored positively (p & lt;.05). However, parents felt telemedicine was not as good as in-person appointments. Key learning points/Conclusion Overall respondents said they would prefer the next appointment to be in-person (82% Europe, 62% Canada, p & lt;.05), although 31% from Canada were amenable to a combination of in-person and telemedicine-based care. There are advantages to telemedicine, notably saving time and making appointments accessible. Families from Canada tended to view telemedicine more favourably than those from Europe, although the majority from both cohorts reported concerns about the ability to assess their child. There may be value in providing training to parents to enhance the accuracy of home-based assessments, particularly when the disease is stable. However, parents continue to report the value of in-person appointments.
    Type of Medium: Online Resource
    ISSN: 2514-1775
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2022
    detail.hit.zdb_id: 2899298-2
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  • 2
    In: Rheumatology Advances in Practice, Oxford University Press (OUP), Vol. 7, No. 1 ( 2022-12-30)
    Abstract: Uncertainty regarding the risk of coronavirus disease 2019 (COVID-19), its complications and the safety of immunosuppressive therapies may drive anxiety among adults and parents of children and young people (CYP) with rheumatic diseases. This study explored trajectories of COVID-related anxiety in adults and parents of CYP with rheumatic diseases. Methods Adults and parents of CYP participating in the international COVID-19 European Patient Registry were included in the current study if they had enrolled in the 4 weeks following 24 March 2020. COVID-related anxiety scores (0–10) were collected weekly for up to 28 weeks. Group-based trajectory models explored COVID-related anxiety clusters in adult and parent populations, with optimal models chosen based on model fit, parsimony and clinical plausibility. Demographic, clinical and COVID-19 mitigation behaviours were compared between identified clusters using univariable statistics. Results In 498 parents of CYP and 2640 adults, four common trajectory groups of COVID-related anxiety were identified in each cohort: persistent extreme anxiety (32% and 17%), persistent high anxiety (43% and 41%), improving high anxiety (25% and 32%) and improving moderate anxiety (11% and 10%), respectively. Few characteristics distinguished the clusters in the parent cohort. Higher and more persistent anxiety clusters in the adult cohort were associated with higher levels of respiratory comorbidities, use of immunosuppressive therapies, older age and greater self-isolation. Conclusions COVID-19-related anxiety in the rheumatic disease community was high and persistent during the COVID-19 pandemic, with four common patterns identified. In the adult cohort, higher COVID-related anxiety was related to perceived risk factors for COVID-19 morbidity and mortality.
    Type of Medium: Online Resource
    ISSN: 2514-1775
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2022
    detail.hit.zdb_id: 2899298-2
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  • 3
    In: The Lancet Rheumatology, Elsevier BV, Vol. 4, No. 4 ( 2022-04), p. e237-e240
    Type of Medium: Online Resource
    ISSN: 2665-9913
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2022
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  • 4
    In: Rheumatology, Oxford University Press (OUP), Vol. 60, No. 7 ( 2021-07-01), p. 3474-3475
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 1474143-X
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  • 5
    In: Rheumatology, Oxford University Press (OUP), Vol. 60, No. Supplement_1 ( 2021-04-25)
    Abstract: Background/Aims  Younger and older people with rheumatic diseases may experience increased anxiety during the COVID-19 pandemic, due to the uncertainty regarding their likelihood of contracting the virus, its complications alongside their existing condition and whether their immunosuppressive treatments pose additional risks. This study explored trajectories of anxiety in parents of children and young people (CYP) with rheumatic diseases and adults with rheumatic diseases in the six months following March 2020 during the COVID-19 pandemic. Methods  CYP and adults recruited to the international COVID-19 European Patient Registry, a parent-led, online, self-referred prospective cohort recruiting participants globally, were selected if enrolled within 20th March to 17th April 2020. Anxiety scores (0-10, 10=Highest anxiety) were collected weekly for up to 28 weeks and denoted parent anxiety in the CYP cohort and self-reported anxiety in the adult cohort. Group-based trajectory models explored anxiety clusters using censored-normal models in the CYP and adult populations, separately. Linear, quadratic and cubic polynomials were tested within 1 to 10 clusters and optimal models selected based on a combination of model fit (BIC), parsimony and clinical plausibility. Demographic (country, age, gender) and clinical (diagnosis, disease control, respiratory comorbidity, immunosuppressive therapy) information and COVID-19 mitigation behaviours (isolation, distancing, none) were collected at initial enrolment and compared between clusters using Chi-squared, Fisher’s exact and Kruskal-Wallis tests. Results  Among 498 CYP and 2640 adults, most were female (65%, 89%) and from the UK (50%, 84%), respectively. The most common diagnoses were polyarticular JIA (37%) and oligoarticular JIA (29%) among CYP and RA among the adults (63%). Respiratory comorbidities were uncommon in the CYP (10%) and adult (17%) cohorts, and most were taking any immunosuppressive therapies (85%, 87%), respectively. As of March 2020, 88% and 79% were self-isolating, respectively. In both the parents of CYP and adult cohorts, four trajectory clusters were identified with similar patterns: Persistent extremely high anxiety (32%, 17%), persistent high anxiety (43%, 41%), high anxiety that marginally improved (25%, 32%) and moderate anxiety that improved (11%, 10%). Among CYP, few characteristics distinguished the clusters. However, in the adult cohort, clusters with greater and more persistent anxiety were associated with higher levels of respiratory comorbidities, higher use of immunosuppressive therapies, higher initial levels of self-isolation and slightly older age than those with lower or improving anxiety over time. Conclusion  This study reports four trajectories of anxiety during the COVID-19 pandemic that are consistent across parents of CYP with rheumatic diseases and among adults with these conditions. Despite relatively lower risks for CYP, parental anxiety regarding COVID-19 was high and not associated with characteristics of their child or of their child's disease. Among adults with rheumatic diseases, greater anxiety was associated with risk factors potentially associated with COVID-19 morbidity and mortality. Disclosure  S.J.W. Shoop-Worrall: None. S.M.M. Verstappen: None. W. Costello: None. S.P. Angevare: None. Y. Uziel: None. C. Wouters: None. N. Wulffraat: Honoraria; Sobi. Grants/research support; Abbvie. R. Beesley: None.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 1474143-X
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  • 6
    In: Rheumatology, Oxford University Press (OUP), Vol. 61, No. Supplement_1 ( 2022-04-23)
    Abstract: Vaccination of children and young people (CYP) with rheumatic and auto-inflammatory diseases is reported to be lower than amongst healthy peers. Whilst vaccination to confer protection against COVID-19 is now underway amongst adults and adolescents, vaccination of CYP under 16 years was not available at the time of this study. This study sought to understand the views of parents/carers regarding vaccination against COVID-19 for CYP with rheumatic and autoinflammatory diseases. Methods An online survey was developed and shared via social media and direct contacts, targeted at parents of children with rheumatic and autoinflammatory conditions in Canada. Fieldwork took place during May 2021. Consent was provided during enrolment. Results A total of 157 responses were received (78% female, median age 12). The primary diagnosis for the majority was juvenile idiopathic arthritis (JIA; 39% polyarticular, 15% oligoarticular, 8% enthesitis-related JIA, 6% psoriatic, and 9% systemic). At the time of completing the survey, the majority of CYP had received no vaccination against COVID-19 (83%), although 17% had received one dose; none had received both doses. The majority of parents/carers (55%) would agree for their child to be vaccinated to prevent COVID-19 if the vaccine was approved and available at no cost, with only 10% saying they would not agree, and 18% unsure. Overall, 40% would allow their child to have the vaccine as soon as it was available, with a further 22% who would prefer to wait, and 10% who will allow their child to have the vaccine only when required to. Reasons given by parents choosing not to vaccinate their child against COVID-19 focussed on perceived safety, apparent lack of testing, and alleged potential damage caused by vaccines. In addition, some respondents advised that they had seen anti-vaccine videos on social media targeted at young people, but would still have their child vaccinated when it was available. The majority (92%) cited their doctor or health professionals would be a key source of information when deciding whether to vaccinate their child; however, this varied significantly (p=.0017, chisquare) based on whether they currently would agree to have their child vaccinated, with only 69% of parents who would not vaccinate their child saying their healthcare professional would influence their decision. Around 38% of parents would be influenced by information from their patient organisation. Parents who indicated they would not be vaccinated themselves were less likely to agree for their child to be vaccinated (p & lt;.001, chi-square). Conclusion Healthcare professionals play a vital role in supporting, advising and influencing parental decision-making with regards to COVID-19 vaccination amongst CYP with rheumatic and autoinflammatory conditions, particularly amongst parents/carers who are currently undecided. Working collaboratively with patient organisations to deliver simple, clear advice may help reduce vaccine hesitancy. Disclosure J. Wilson: None. W. Costello: None. S. Angevare: None. R.P. Beesley: None.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2022
    detail.hit.zdb_id: 1474143-X
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  • 7
    In: The Lancet Rheumatology, Elsevier BV, Vol. 3, No. 10 ( 2021-10), p. e707-e714
    Type of Medium: Online Resource
    ISSN: 2665-9913
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2021
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  • 8
    In: Rheumatology, Oxford University Press (OUP), Vol. 61, No. SI2 ( 2022-06-28), p. SI143-SI150
    Abstract: To examine the frequency of, and risk factors for, disease flare following COVID-19 vaccination in patients with systemic rheumatic disease (SRD). Methods An international study was conducted from 2 April to 16 August 2021, using an online survey of 5619 adults with SRD for adverse events following COVID-19 vaccination, including flares of disease requiring a change in treatment. We examined risk factors identified a priori based on published associations with SRD activity and SARS-CoV-2 severity, including demographics, SRD type, comorbidities, vaccine type, cessation of immunosuppressive medications around vaccination and history of reactions to non-COVID-19 vaccines, using multivariable logistic regression. Results Flares requiring a change in treatment following COVID-19 vaccination were reported by 4.9% of patients. Compared with rheumatoid arthritis, certain SRD, including systemic lupus erythematosus (OR 1.51, 95% CI 1.03, 2.20), psoriatic arthritis (OR 1.95, 95% CI 1.20, 3.18) and polymyalgia rheumatica (OR 1.94, 95% CI 1.08, 2.48) were associated with higher odds of flare, while idiopathic inflammatory myopathies were associated with lower odds for flare (OR 0.54, 95% CI 0.31–0.96). The Oxford-AstraZeneca vaccine was associated with higher odds of flare relative to the Pfizer-BioNTech vaccine (OR 1.44, 95% CI 1.07, 1.95), as were a prior reaction to a non-COVID-19 vaccine (OR 2.50, 95% CI 1.76, 3.54) and female sex (OR 2.71, 95% CI 1.55, 4.72). Conclusion SRD flares requiring changes in treatment following COVID-19 vaccination were uncommon in this large international study. Several potential risk factors, as well as differences by disease type, warrant further examination in prospective cohorts.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2022
    detail.hit.zdb_id: 1474143-X
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  • 9
    In: Rheumatology, Oxford University Press (OUP), Vol. 61, No. Supplement_1 ( 2022-04-23)
    Abstract: During the COVID-19 (coronavirus) pandemic, some healthcare provision shifted to remote, technology-assisted appointments (telemedicine). This study sought the views of parents/carers about telemedicine, identifying the benefits and limitations, to assist in improvement to future service provision. Methods An online survey was developed and shared via social media and direct contacts, targeted at parents of children with rheumatic and autoinflammatory conditions in Canada. Fieldwork took place during May 2021. Consent was provided during enrolment. Results A total of 157 responses were received (78% female, median age 12). The primary diagnosis for the majority was juvenile idiopathic arthritis (JIA; 39% polyarticular, 15% oligoarticular, 8% enthesitis-related JIA, 6% psoriatic, and 9% systemic). Respondents reported in-person appointments represent a considerable time burden (87% travel more than an hour to attend; 40% take a full day [or more] out of school to attend; 38% of parents take a full day off work). During the pandemic, the proportion having a telemedicine appointment increased from 5% to 82%. Table 1 shows the scores (1 worst, 5 best) given by parents about their telemedicine experience. Overall, most aspects scored positively (p & lt;.05). However, parents felt telemedicine was not as good as in-person appointments (mean 2.66, 95% CI 2.42-2.90). The majority of respondents reported telemedicine appointments had saved them time (68%), and many said it enabled them to have an appointment (63%) and made the appointment safer (59%), and many said it saved money (44%). However, 78% felt that their consultant could not properly assess their child, 22% were concerned that the doctor could not identify changes in their child’s condition, 14% said it was hard to explain their child’s condition, and 18% of parents and 22% of CYP disliked telemedicine. Overall, 61% said they would prefer the next appointment to be in-person, while 31% were amenable to some combination of in-person and virtual care. Conclusion There are advantages to telemedicine, notably saving time and making appointments accessible, and overall parents reported satisfaction with remote appointments. However, parents continue to report the value of in-person appointments. Disclosure J. Wilson: None. W. Costello: None. S. Angevare: None. R.P. Beesley: None.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2022
    detail.hit.zdb_id: 1474143-X
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  • 10
    In: Rheumatology, Oxford University Press (OUP), Vol. 60, No. Supplement_1 ( 2021-04-25)
    Abstract: Background/Aims  In March 2020, the WHO characterised COVID-19 as a pandemic. Whilst many people with COVID-19 infection appeared to have mild or no symptoms, a significant proportion became seriously ill. At the time, little was known about how patients with rheumatic or autoimmune conditions, many of whom use immunosuppressive medications, are affected by the virus. The aim of the patient-led longitudinal survey (the COVID-19 European Patient Registry, EPR) is to better understand the impact of COVID-19 on these patients. This specific analysis aims to understand how the number of confirmed COVID-19 cases affects the self-reported level of worry experienced by participants. Methods  The EPR comprises an online health questionnaire. Each week participants are sent a short follow-up survey concerning exposure to COVID-19, symptoms, diagnosis, how worried they feel (scale, 0-10), and a range of behaviours. The weekly mean worry score from participants was calculated by country, and compared to the weekly total number of cases of COVID-19 reported within each country. The association between worry score and a range of behaviours was also calculated. Results  To 27 September 2020, a total of 3,619 adults and 639 children were included in the EPR. There is a correlation between the total number of weekly cases and the mean worry score amongst UK-based adult participants in the EPR (linear regression, R2=0.779,P & lt;0.001). Interestingly, there is no such correlation in any other country with participants in the EPR, nor amongst parents of children with rheumatic conditions. Additionally, the level of worry is associated with specific behaviours that affect exposure to the coronavirus for all adult participants. P055 Table 1:BehaviourEffect of worrySocial distancing*Mean worry correlated with proportion of participants social distancingSelf-isolation (staying at home despite no symptoms or known exposure to cases)*Mean worry correlated with proportion of participants self-isolatingNo action to protect against coronavirus*Mean worry negatively correlated with proportion of participants not social distancing or self-isolatingMask wearing or remaining home**Participants with higher worry score more likely to not leave home at all during the weekParticipants with higher worry score more likely to remain outside and not enter buildings during the weekParticipants with higher worry score more likely to wear a mask every time they leave homeParticipants with lower worry score more likely to not wear a maskParticipants with lower worry score more likely to wear a mask only ‘sometimes’Level of self-reported worry, associated with a range of behaviours.*Pearson’s correlation, P & lt; 0.001.**ANOVA, P & lt; 0.05. Conclusion  The number of confirmed cases of COVID-19 is associated with the level of worry, and consequent behaviour change, amongst UK adults with rheumatic conditions. This suggests that the number of cases, government response, and media portrayal affect how worried participants feel. This in turn drives behavioural change towards COVID-avoiding behaviours. This phenomenon appears exclusive to UK-based adults, suggesting differences in the perception of the threat posed by COVID varies between countries. Disclosure  R.P. Beesley: None. W. Costello: None. S.P. Angevare: None. Y. Uziel: None. C. Wouters: None. N. Wulffraat: Grants/research support; NW has received funding for research by AbbVie, speakers honorarium by Sobi (not related to this study).
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 1474143-X
    Location Call Number Limitation Availability
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