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Context: Primary Care Research seeks to "meet our patients where they are" to make research more accessible and inclusive. During the COVID-19 pandemic, recruitment practices shifted. Letters, emails, phone calls took the place of in-person recruitment. Objective: Evaluate the effect of COVID-19 on recruitment demographics across primary care practices within a single health system for "The CAPTURE study: Validating a unique COPD case finding tool in primary care." Study Design and Analysis: Comparative analysis of demographics including race, gender, age from ten urban and rural clinics. The analysis included five practices with in-person recruitment pre-pandemic and 5 with virtual recruitment practices during the pandemic. Setting : Family and Internal Medicine practices, rural and urban. Population Studied: Patients (45-80, male and female) Intervention/Instrument: Before March 2020, pre-pandemic, our team focused on in-person recruitment. Clinicians' schedules were screened for patients who were then consented and enrolled during a clinic visit. After March 2020, our team transitioned to virtual recruit using a population report to identify patients. An email or mailed letter was sent to patients followed by a phone call. Outcome Measures: Percent enrolled relative to total clinic populations (pop). Results: In-person, 31.6% of enrollees were male compared to the clinic pop. of 41.5%. With virtual recruitment, 40.9% of enrollees were male compared to the clinic pop. of 39.9%. This gender difference was statistically significant (t-test p<0.05). In-person, 21.0% of enrollees were self-reported African American/Black (AA/Black) compared to the clinic pop. of 14.6%. With virtual recruitment, 18.1% of enrollees self-reported as AA/Black compared to the clinic pop. of 23.6%. In-person, 60.0% of enrollees were between the 45-64 compared to the clinic pop. of 55.0%. With virtual recruitment, 54.7% of enrollees were 45-64 compared to the clinic pop. of 60.8%. Although there was a trend toward fewer AA/Black enrollees and enrollees 45-64 through virtual recruitment, the difference was not statistically significant. Conclusion : During the COVID-19 pandemic, remote recruitment significantly increased the proportion of male participants but trended toward reduced proportion of AA/Black participants as well as those between the age of 45-64. These results suggest changing recruitment strategies between in person and virtual can alter recruitment outcomes. Copyright © 2023 Annals of Family Medicine, Inc.
ABSTRACT
Introduction/Background: 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<.05). However, parents felt telemedicine was not as good as in-person appointments.Table 1P65 Mean scores for a range of aspects of telemedicine (1-worst;5-best). EuropeCanadaPEasy to schedule3.50 (3.18, 3.82) *4.33 (4.14, 4.52) *†On time3.22 (2.89, 3.55)4.07 (3.85, 4.28) *†Enough time with doctor3.51 (3.19, 3.83) *4.24 (4.02, 4.45) *†As good as in-person visit2.21 (1.96, 2.46) **2.66 (2.42, 2.90) ** Easier to see doctor2.84 (2.55, 3.13)3.51 (3.25, 3.77) *†Easy to sign-in3.52 (3.22, 3.82) *4.25 (4.06, 4.43) *†Quality of video3.23 (2.93, 3.53)3.87 (3.66, 4.07) *†Quality of sound3.54 (3.26, 3.81) *3.94 (3.75, 4.14) * Able to speak freely3.61 (3.34, 3.88) *4.05 (3.85, 4.24) * Able to understand doctor3.61 (3.32, 3.90) *4.09 (3.90, 4.28) * Quality of care provided3.43 (3.12, 3.73) *3.78 (3.56, 4.00) * Overall telemedicine experience3.23 (2.91, 3.55)3.78 (3.57, 3.99) *†*Positive score (p<.05).**Negative score (p<.05).†Difference between Canadian and European cohorts is statistically significant (p<.05), chi-square. Key learning points/Conclusion: Overall respondents said they would prefer the next appointment to be in-person (82% Europe, 62% Canada, p<.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.
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Introduction/Background: 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. Description/Method: 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. Discussion/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<.001, chi-square). Key learning points/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.
ABSTRACT
Introduction/Background: 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. Description/Method: 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. Discussion/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<.05). However, parents felt telemedicine was not as good as in-person appointments (mean 2.66, 95% CI 2.42-2.90).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.P62 Table 1Mean scores for a range of aspects of telemedicine (1-worst;5-best).AspectMean (95% CI)Easy to schedule4.33 (4.14, 4.52) *On time4.07 (3.85, 4.28) *Enough time with doctor4.24 (4.02, 4.45) *As good as in-person visit2.66 (2.42, 2.90) **Easier to see doctor3.51 (3.25, 3.77) *Easy to sign-in4.25 (4.06, 4.43) *Quality of video3.87 (3.66, 4.07) *Quality of sound3.94 (3.75, 4.14) *Able to speak freely4.05 (3.85, 4.24) *Able to understand doctor4.09 (3.90, 4.28) *Quality of care provided3.78 (3.56, 4.00) *Overall telemedicine experience3.78 (3.57, 3.99) **Positive score (p<.05)**Negative score (p<.05). Key learning points/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.
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BACKGROUND: Following the outbreak of COVID-19, global healthcare systems have had to rapidly adapt. People with multiple sclerosis (pwMS) were required to make decisions about their individual risk and consequent work and social behaviors. This study aimed to evaluate risk perception and patterns of shielding behavior amongst pwMS at the onset of the COVID-19 pandemic and the subsequent impact on patients' employment and access to disease modifying therapies (DMTs). METHODS: Postal surveys were sent to 1690 people within a UK population-based MS cohort during the first wave of the COVID-19 pandemic. Patients were surveyed on: (i) perceived vulnerability to COVID-19; (ii) isolation behavior; (iii) interruption to DMT; (iv) employment status; (v) level of satisfaction with their current working arrangement. RESULTS: Responses were received from 1000 pwMS. Two thirds of patients reported isolating at home during the first wave of the pandemic. This behavior was associated with increased age (p<0.0001), higher disability (p<0.0001) and use of high-efficacy DMTs (p = 0.02). The majority of patients reported feeling vulnerable (82%) with perceived vulnerability associated with higher EDSS (p<0.0001) and receiving a high-efficacy DMT (p = 0.04). Clinician-defined risk was associated with shielding behavior, with those at high-risk more likely to self-isolate/shield (p<0.0001). Patients on high-efficacy DMTs were more likely to have an interruption to their treatment (50%) during the first wave of the pandemic. Most pwMS experienced a change to their working environment, and most were satisfied with the adjustments. CONCLUSION: This study highlights the risk perception, social behavioral practices and changes to treatment experienced by pwMS during the first wave of the COVID-19 pandemic in a large, well-described UK cohort. The results may help inform management of pwMS during future pandemic waves.
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Background: A major concern across rheumatology in recent years is how contracting COVID-19 may impact the control of rheumatic diseases. Objectives: To quantify any difference in rheumatic disease control between those who did and did not contract COVID-19 between March and December 2020 and whether rheumatic disease control changed after COVID-19 was contracted. Methods: Adults with rheumatic diseases recruited to the COVID-19 European Patient Registry, a patient-led, online, self-referred prospective cohort recruiting participants from around the globe, were included if enrolled between March and December 2020. Rheumatic disease control was self-reported weekly on a scale of 0 (very poor) to 10 (very well). Dates of contracting COVID-19 were self-reported. Differences in rheumatic disease control trends between those who did and did not contract COVID-19 over the study period were tested via multilevel linear regression. Within those who contracted COVID-19, differences in rheumatic disease control trends were tested via segmented multilevel, multivariable linear regression, adjusting for month of COVID-19 contraction and with the interruption point set at the point of COVID-19 contraction. Results: Of 3646 adults with rheumatic diseases, the majority were female (89%), most commonly from the UK (82%) and the most common rheumatic disease diagnosis was RA (63%). Between March and December 2020, 3% of the cohort contracted COVID-19 (n=103). Over the study period, rheumatic disease control for adults who did not contract COVID-19 decreased weekly by 0.01 points (95% CI 0.01, 0.02, p<0.001). In those who contracted COVID-19, rheumatic disease control decreased weekly by 0.03 points (95% CI 0.2, 0.05, p<0.001), with a significant weekly difference of 0.86 points between groups (95% CI 0.28, 1.44, p=0.004) (Figure 1a). Within those that contracted COVID-19, there were signifcant differences in rheumatic disease control trends before and after contracting COVID-19 (p=0.001). In the run up to contracting COVID-19, rheumatic disease control signifcantly decreased weekly by 0.03 points (95% CI 0.02, 0.04, p<0.001), dropped signifcantly by 0.53 points (95% CI 0.23, 0.83, p=0.001) at the point of COVID contraction and then stabilised with no further reductions or improvement in rheumatic disease control for the remainder of follow-up (p=0.831) (Figure 1b). Conclusion: People who contracted COVID-19 had initial decreases in rheumatic disease control before contracting the virus, after which their disease control stabilised at a lower level. Those with disease flares should consider increased screening for COVID-19 and COVID-19 mitigation measures. The stabilising lower disease control post-COVID is concerning and should prompt further work into restoring disease control pre-COVID-19 levels.
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Background: 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 benefts of telemedicine, concerns remain. Objectives: This patient and parent-led project sought to understand the views of parents/carers about telemedicine, identifying the benefts and limitations of remote technology-assisted appointments, and comparing views between Canadian and European cohorts. Methods: 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 autoinfammatory conditions. Fieldwork took place in April 2021 in Europe and May 2021 in Canada. Consent was provided during enrollment. Results: A total of 290 responses were received (133 Europe;157 Canada). Of these, 73% were 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 signifcantly higher proportion of respondents in Canada (87%). Consequently, in-person appointments represent a greater time burden amongst Canadian car-egivers, 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. When asked about aspects of telemedicine, a greater proportion of respondents from Canada answered favourably compared to those from Europe with the majority reporting telemedicine appointments had saved them time, enabled them to have an appointment and that it made the appointment safer. However, most felt that their consultant could not properly assess their child (72% Europe, 78% Canada, P<.05). Overall respondents said they would prefer the next appointment to be in-person (82% Europe, 62% Canada, p<.05), although 31% from Canada were amenable to a combination of in-person and telemedicine-based care. Conclusion: There are advantages to telemedicine, notably saving time and making appointments accessible. Families from Canada tended to view telemed-icine 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.
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Background/Aims 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<.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.
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Background/Aims 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% enthesitisrelated 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<.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.
ABSTRACT
Introduction: 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, vaccination of children under 16 years is not yet available. Objectives: 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, translated into multiple languages and shared via social media and patient organisations, targeted at parents of children and young people (CYP) with rheumatic, autoimmune and autoinflammatory conditions. Fieldwork took place between 2 and 22 April 2021. Consent was provided during enrolment. Results: A total of 133 CYP were included (66% female, median age 12). The majority were from the UK, Ireland and Greece (53%, 26%, and 9% respectively). The primary diagnosis for the majority was Juvenile Idiopathic Arthritis (JIA;46% polyarticular, 16% oligoarticular, 13% enthesitis-related JIA, 7% psoriatic, and 7% systemic), although no significant differences in outcomes between any diagnoses were identified. At the time of completing the survey, the majority of CYP had received no vaccination against COVID-19 (93%), although 5% had received one dose and 2% had received both doses;those receiving any vaccination were all aged 16 and over. The majority of parents/ carers (65%) would agree for their child to be vaccinated to prevent COVID-19 if the vaccine was approved and available at no cost, with only 8% saying they would not agree, and 21% unsure. Overall, 45% would allow their child to have the vaccine as soon as it was available, with a further 20% who would prefer to wait, and 11% 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. When asked about the sources of information most likely to influence their decision about vaccination against COVID-19 for their child, the majority (90%) cited their doctor or health professionals;however this varied significantly (p=.015, chi-square) based on whether they currently would agree to have their child vaccinated, with only 64% of parents who would not vaccinate their child saying their healthcare professional would influence their decision. Around one-third of parents would be influenced by information from their patient organisation. Unsurprisingly, parents who indicated they would not be vaccinated themselves were less likely to agree for their child to be vaccinated (p<.001, chi-square). Conclusion: Healthcare professionals and patient organisations play a key role in supporting, advising and influencing parental decisionmaking with regards to COVID-19 vaccination amongst CYP with rheumatic and autoinflammatory conditions, particularly amongst parents/carers who are currently undecided whether to vaccinate or not. As vaccines become available for CYP there is a need for accurate, reliable and clear information for parents and carers to make informed decisions.
ABSTRACT
Introduction: During the COVID-19 (coronavirus) pandemic, some provision of healthcare has shifted to remote, technology-assisted appointments (telemedicine). Whilst parents/carers of children and young people (CYP) have reported benefits of telemedicine, some concerns remain. Objectives: To understand the views of parents/carers about telemedicine, identifying the benefits and limitations of remote technology-assisted appointments. Methods: An online survey was developed, translated into multiple languages and shared via social media and patient organisations, targeted at parents of CYP with rheumatic, autoimmune and autoinflammatory conditions. Fieldwork took place 2-22 April 2021. Consent was provided during enrolment. Results: A total of 133 CYP were included (66% female, median age 12). The majority were from the UK, Ireland and Greece (53%, 26%, and 9% respectively). Over half of respondents (53%) reported that it takes over an hour to travel to in-person appointments with their paediatric rheumatologist, 51% reported an appointment usually takes over three hours in total, and 45% take a full day out of school to attend. Parents reported taking time off work to attend appointments (41% take a full day, and 4% take two days off per appointment). Prior to COVID-19, 47% visited their paediatric rheumatologist four times per year. Overall, this represents a significant time burden for families. Prior to COVID-19, 92% had never had a telemedicine appointment. Since March 2020, 71% had at least one telemedicine appointment (median 2, range 0-20). Table 1 shows the scores (1 worst, 5 best) given by parents about their telemedicine experience. Overall, most aspects scored positively (p<.05). However, parents felt telemedicine was not as good as in-person appointments (mean 2.2, 95% CI 1.96-2.46). 56% of respondents reported telemedicine appointments had saved them time. 50% said it enabled them to have an appointment and 47% felt that it made the appointment safer. However, 76% felt that their consultant could not properly assess their child, 27% were concerned that the doctor could not identify changes in their child's condition, 26% said it was hard to explain their child's condition, and 27% of parents and 23% of CYP disliked telemedicine. Overall 82% said they would prefer the next appointment to be inperson. Conclusion: Whilst there are advantages to telemedicine, notably saving time and making appointments accessible, parents reported concerns about the ability to assess their child. There may be value in providing training to parents to allow for homebased assessments, particularly when the disease is stable. However, parents continue to report the value of in-person appointments.
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Background: People with rheumatic diseases may be at increased risk of contracting COVID-19 due to their rheumatic disease or immunosuppressive treatments. It is currently unclear what the COVID-19 disease burden is for these people and whether any of their personal or disease characteristics are associated with contracting COVID-19. Objectives: To explore the proportion of, and characteristics associated with, contracting COVID-19 in children and young people (CYP) with rheumatic diseases and adults with rheumatic diseases from March 2020 to December 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 from around the globe, were included in current study if enrolled between 20th March 2020 and 30th December 2020. Demographic information was collected at enrolment and rheumatic disease, diagnoses of COVID-19 and lifestyle factors were collected at weekly intervals. The proportion of CYP and adults diagnosed with COVID-19 were assessed separately. Associations between contraction of COVID-19 at any point over follow-up and participant demographics, rheumatic disease and lifestyle factors at enrolment were assessed descriptively and via Mann-Whitney U-tests, Chisquared tests and Fisher's exact tests. Results: Within 642 CYP and 3646 adults, the majority were female (67%, 89%) and most commonly from the UK (43%, 82%), respectively. The most frequent diagnoses were polyarticular JIA (37%) in the CYP cohort and RA in the adults (63%). Comorbidities were common (45%, 61%) and the majority were taking one or more immunosuppressive therapies (88%, 92%), respectively. At the time of enrolment, 51% and 54% were practising social distancing, respectively. In both cohorts ∼3% contracted COVID-19 at some point during follow-up (n=18 (2.8%) in CYP and n=103 (2.8%) in the adult cohort). In CYP, those who contracted COVID-19 were older (no COVID, median: 10, IQR: 7, 13, vs COVID, median: 14, IQR: 12, 16, p<0.001) and less often had oligoarticular JIA (no COVID: 31%, COVID: 22%) or polyarticular JIA (No COVID: 38%, COVID: 11%). Systemic JIA (no COVID: 7%, COVID: 11%) and enthesitis-related JIA (no COVID: 5%, COVID: 22%) were more common in those who contracted COVID. No other differences between those with and without COVID-19 were observed with respect to country of residence (p=0.335), gender (p=0.624), control of rheumatic disease (p=0.459), comorbidities (p=0.752), immunosuppressive medication (p=0.713) or social distancing (p=0.729). In the adult cohort, those contracting COVID-19 were more commonly from Russia (no COVID: 2%, COVID: 14%) and less commonly from the UK (no COVID: 82%, COVID: 71%, p<0.001). There was greater female representation in those that contracted COVID-19 (no COVID: 88%, COVID: 93%, p=0.022). Although there were no differences in overall presence of comorbidity (p=0.923), kidney disease was overrepresented in those that had contracted COVID-19 (no COVID: 2%, COVID: 8%, p<0.001). Finally, there were lower levels of social distancing in those who contracted COVID (no COVID: 54%, COVID: 44%, p=0.047). There were no significant differences in age (p=0.203), BMI (p=0.617), smoking status (p=0.120), rheumatic disease (p=0.181) and its control (p=0.218) or immunosuppressive use (p=0.208) between those who did and did not contract COVID-19 in the adult cohort. Conclusion: A low proportion of CYP and adults with rheumatic diseases contracted COVID-19 in the 9 months since March 2020. However, given the self-reported nature of the survey and limited testing available across many countries, this study may underestimate the true burden of COVID-19 in the rheumatic disease community. Factors associated with COVID-19 differ between CYP and adults, with age and type of rheumatic disease associated in CYP and gender, kidney comorbidity and social distancing associated in adults.
ABSTRACT
Background: Juvenile Idiopathic Arthritis (JIA) is a heterogenous group of autoimmune disorders characterised by chronic joint inflammation, diagnosed in around 1 in 1,000 children and young people (CYP) under the age of 16. Delays in diagnosis are common [1], awareness is low, and paediatric rheumatological conditions have a considerable impact on young people and their families [2]. A lack of understanding amongst families of newly-diagnosed children leads to uncertainty and anxiety. Objectives: This patient and parent-led project developed a resource pack for parents of CYP newly-diagnosed with JIA, to provide information and support. Following a pilot, feedback from recipients was collated and analysed to help improve future provision. Methods: A young person with JIA identified the need for direct family support. Juvenile Arthritis Research (a UK charity) developed a unique pack of support information, containing resources for both children and their families -called A Little Box Of Hope. This included information about JIA and support services available for families, as well as Kipo (a children's book about JIA) and accompanying finger puppet. Clinicians at one paediatric rheumatology centre provided information about the packs to newly diagnosed families, who then requested a free box to be posted to them. Following an initial pilot study, recipients were invited to complete a short online questionnaire and provide feedback to allow refinement of the provision. Results: Respondents were asked a series of questions, each on a scale of 1-5. Every respondent gave a score of 5 in response to What do you think of the idea of A Little Box Of Hope Every parent of children under ten years old gave a score of 5 for every item when asked How useful is each item in your Little Box Of Hope Respondents also gave free-text comments: ∗ It was very well thought out and I felt supported ∗ I know so much more about JIA now than I did before. I cannot thank you enough. ∗ It was extremely useful and made me feel supported during a very stressful time and this enabled me to support my son more effectively. ∗ It made my daughter feel less alone. Some parents of older children felt that some information specifically for teens would be useful, and a Teen pack is being developed. Conclusion: Recipients of A Little Box Of Hope have found the information useful and feel supported. Following the pilot study, we have developed My JIA, a booklet reviewed by a multi-disciplinary clinical team, with comprehensive information for families affected by JIA. A Teen pack, for children aged around 10 years or older, is being developed to provide targeted support to this group. The COVID-19 pandemic has adversely affected access to healthcare services, increasing the need for remote parent-and charity-provided support through A Little Box Of Hope. As such, we intend to expedite the roll-out of the project across the country building on the success of the pilot project.
ABSTRACT
Background/AimsIn March 2020, the WHO characterised COVID-19 as a pandemic.Whilst many people with COVID-19 infection appeared to have mild orno symptoms, a significant proportion became seriously ill. At the time, little was known about how patients with rheumatic or autoimmuneconditions, many of whom use immunosuppressive medications, areaffected by the virus. The aim of the patient-led longitudinal survey (theCOVID-19 European Patient Registry, EPR) is to better understand theimpact of COVID-19 on these patients. This specific analysis aims tounderstand how the number of confirmed COVID-19 cases affects theself-reported level of worry experienced by participants.MethodsThe EPR comprises an online health questionnaire. Each weekparticipants are sent a short follow-up survey concerning exposureto COVID-19, symptoms, diagnosis, how worried they feel (scale, 0-10), and a range of behaviours. The weekly mean worry score fromparticipants was calculated by country, and compared to the weeklytotal number of cases of COVID-19 reported within each country. Theassociation between worry score and a range of behaviours was alsocalculated.ResultsTo 27 September 2020, a total of 3, 619 adults and 639 children wereincluded in the EPR. There is a correlation between the total number ofweekly cases and the mean worry score amongst UK-based adultparticipants in the EPR (linear regression, R2=0.779, P<0.001).Interestingly, there is no such correlation in any other country withparticipants in the EPR, nor amongst parents of children withrheumatic conditions. Additionally, the level of worry is associatedwith specific behaviours that affect exposure to the coronavirus for alladult participants. ConclusionThe number of confirmed cases of COVID-19 is associated with thelevel of worry, and consequent behaviour change, amongst UK adultswith rheumatic conditions. This suggests that the number of cases, government response, and media portrayal affect how worriedparticipants feel. This in turn drives behavioural change towardsCOVID-avoiding behaviours. This phenomenon appears exclusive toUK-based adults, suggesting differences in the perception of thethreat posed by COVID varies between countries.
ABSTRACT
Background/AimsYounger and older people with rheumatic diseases may experienceincreased anxiety during the COVID-19 pandemic, due to theuncertainty regarding their likelihood of contracting the virus, itscomplications alongside their existing condition and whether theirimmunosuppressive treatments pose additional risks. This studyexplored trajectories of anxiety in parents of children and youngpeople (CYP) with rheumatic diseases and adults with rheumaticdiseases in the six months following March 2020 during the COVID-19pandemic.MethodsCYP and adults recruited to the international COVID-19 EuropeanPatient Registry, a parent-led, online, self-referred prospective cohortrecruiting participants globally, were selected if enrolled within 20thMarch to 17th April 2020. Anxiety scores (0-10, 10=Highest anxiety)were collected weekly for up to 28 weeks and denoted parent anxietyin the CYP cohort and self-reported anxiety in the adult cohort.Group-based trajectory models explored anxiety clusters usingcensored-normal models in the CYP and adult populations, separately.Linear, quadratic and cubic polynomials were tested within 1 to 10clusters and optimal models selected based on a combination ofmodel fit (BIC), parsimony and clinical plausibility. Demographic(country, age, gender) and clinical (diagnosis, disease control, respiratory comorbidity, immunosuppressive therapy) informationand COVID-19 mitigation behaviours (isolation, distancing, none)were collected at initial enrolment and compared between clustersusing Chi-squared, Fisher's exact and Kruskal-Wallis tests.ResultsAmong 498 CYP and 2640 adults, most were female (65%, 89%) andfrom the UK (50%, 84%), respectively. The most common diagnoseswere polyarticular JIA (37%) and oligoarticular JIA (29%) among CYPand RA among the adults (63%). Respiratory comorbidities wereuncommon in the CYP (10%) and adult (17%) cohorts, and most weretaking any immunosuppressive therapies (85%, 87%), respectively. Asof March 2020, 88% and 79% were self-isolating, respectively. In boththe parents of CYP and adult cohorts, four trajectory clusters wereidentified with similar patterns: Persistent extremely high anxiety (32%, 17%), persistent high anxiety (43%, 41%), high anxiety that marginallyimproved (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 persistentanxiety were associated with higher levels of respiratory comorbidities, higher use of immunosuppressive therapies, higher initial levels of selfisolation and slightly older age than those with lower or improvinganxiety over time.ConclusionThis study reports four trajectories of anxiety during the COVID-19pandemic that are consistent across parents of CYP with rheumaticdiseases and among adults with these conditions. Despite relativelylower risks for CYP, parental anxiety regarding COVID-19 was highand not associated with characteristics of their child or of their child'sdisease. Among adults with rheumatic diseases, greater anxiety wasassociated with risk factors potentially associated with COVID-19morbidity and mortality.