ABSTRACT
Introduction/Background: Following first reports of paediatric inflammatory multisystem syndrome temporally associated with COVID-19 (PIMS-TS) in April 2020, services have rapidly been developed to manage these patients. In our tertiary paediatric rheumatology service a daily virtual PIMS-TS multidisciplinary (MDT) team meeting was set up in January 2021. This meeting facilitates discussions between the tertiary centre (routinely including paediatric rheumatology and infectious diseases/immunology teams) and general paediatric teams in district general hospitals (DGHs) and within our centre. The aim of this project was to evaluate the service and understand general paediatric opinion in order to consider the future direction of the meeting. Description/Method: We looked at a one month period after meetings were initiated and compared it with a one month period a year later (February 2021 and February 2022) to define patient numbers and outcomes. Alongside this we constructed an online survey aimed at general paediatricians to determine opinion of the current structure of the MDT and how it may be developed in the future. The survey was sent to general paediatricians within our own centre and in the eleven DGHs falling within our region. Results were analysed descriptively. Discussion/Results: During February 2021, 19 new referrals were discussed within the PIMS-TS MDT;each referral was discussed for a median of 5 days (interquartile range (IQR) 3-6 days). Of these, 11/19 (58%) had a final primary diagnosis of PIMS-TS and 5/19 (26%) patients were transferred for tertiary care (of whom 4/5 (80%) had PIMS-TS). In February 2022, 14 new referrals were discussed for a median of 2.5 days (IQR 2-5.75 days). Of these, 3/14 (21%) had a final diagnosis of PIMS-TS and 2/14 (14%) were transferred for tertiary care (of whom neither had PIMS-TS). We received responses from 20 general paediatricians covering 9/11 (82%) DGHs within our region plus our own centre. Most clinicians had discussed up to 6 patients in the meeting (9/20 (45%) 1-3 patients;9/20 (45%) 4-6 patients;2/20 (10%) >6 patients). All clinicians felt the MDT helped facilitate appropriate diagnostic work-up and treatment decisions. 18/20 (90%) felt that the meeting helped avoid unnecessary tertiary paediatric transfers. Interestingly, 9/20 (45%) felt that a routine PIMS-TS MDT meant they were more likely to discuss a patient with rheumatology (1/20 (5%) less likely). All clinicians felt the meeting improved care for patients and most felt it increased their confidence in looking after patients with PIMS-TS (19/20, 95%) and was useful for continuing professional development/training experience (19/20, 95%). Considering the future direction of the meeting, all clinicians felt it should be continued but most (16/20, 80%) felt it should be aimed at a wider patient group. 11/20 (55%) felt a later time of day would be more convenient (currently 11am). Over half (11/20, 55%) thought it should be combined with a currently separate meeting for acute COVID-19 patients (7/20 (35%) don't know;2/20 (10%) no). A minority (4/20, 20%) reported difficulty accessing the meeting. Key learning points/Conclusion: As the initial phase of the pandemic draws to a close and numbers of PIMS-TS cases decline this is important data to reflect on how services can go forward into the next phase. While numbers of PIMS-TS cases reduced, the meeting was still wellused and evolved to include patients with other diagnoses. The survey confirms that most general paediatricians believe it improves patient care and would like the meeting to continue but that review of the format may be helpful. Particular considerations are to broaden the scope of the meeting beyond PIMS-TS, revise the timing and consider how to improve ease of access to the meeting for all. Further work will focus on evaluating patient numbers and diagnoses over the full period of the PIMS-TS MDT and adapting the format of the current MDT in response to the feedback received.
ABSTRACT
Introduction/Background: Following first reports of paediatric inflammatory multisystem syndrome temporally associated with COVID-19 (PIMS-TS) in April 2020, services have rapidly been developed to manage these patients. In our tertiary paediatric rheumatology service a daily virtual PIMS-TS multidisciplinary (MDT) team meeting was set up in January 2021. This meeting facilitates discussions between the tertiary centre (routinely including paediatric rheumatology and infectious diseases/immunology teams) and general paediatric teams in district general hospitals (DGHs) and within our centre. The aim of this project was to evaluate the service and understand general paediatric opinion in order to consider the future direction of the meeting. Description/Method: We looked at a one month period after meetings were initiated and compared it with a one month period a year later (February 2021 and February 2022) to define patient numbers and outcomes. Alongside this we constructed an online survey aimed at general paediatricians to determine opinion of the current structure of the MDT and how it may be developed in the future. The survey was sent to general paediatricians within our own centre and in the eleven DGHs falling within our region. Results were analysed descriptively. Discussion/Results: During February 2021, 19 new referrals were discussed within the PIMS-TS MDT;each referral was discussed for a median of 5 days (interquartile range (IQR) 3–6 days). Of these, 11/19 (58%) had a final primary diagnosis of PIMS-TS and 5/19 (26%) patients were transferred for tertiary care (of whom 4/5 (80%) had PIMS-TS). In February 2022, 14 new referrals were discussed for a median of 2.5 days (IQR 2–5.75 days). Of these, 3/14 (21%) had a final diagnosis of PIMS-TS and 2/14 (14%) were transferred for tertiary care (of whom neither had PIMS-TS).We received responses from 20 general paediatricians covering 9/11 (82%) DGHs within our region plus our own centre. Most clinicians had discussed up to 6 patients in the meeting (9/20 (45%) 1-3 patients;9/20 (45%) 4-6 patients;2/20 (10%) >6 patients). All clinicians felt the MDT helped facilitate appropriate diagnostic work-up and treatment decisions. 18/20 (90%) felt that the meeting helped avoid unnecessary tertiary paediatric transfers. Interestingly, 9/20 (45%) felt that a routine PIMS-TS MDT meant they were more likely to discuss a patient with rheumatology (1/20 (5%) less likely). All clinicians felt the meeting improved care for patients and most felt it increased their confidence in looking after patients with PIMS-TS (19/20, 95%) and was useful for continuing professional development/training experience (19/20, 95%).Considering the future direction of the meeting, all clinicians felt it should be continued but most (16/20, 80%) felt it should be aimed at a wider patient group. 11/20 (55%) felt a later time of day would be more convenient (currently 11am). Over half (11/20, 55%) thought it should be combined with a currently separate meeting for acute COVID-19 patients (7/20 (35%) don’t know;2/20 (10%) no). A minority (4/20, 20%) reported difficulty accessing the meeting. Key learning points/Conclusion: As the initial phase of the pandemic draws to a close and numbers of PIMS-TS cases decline this is important data to reflect on how services can go forward into the next phase. While numbers of PIMS-TS cases reduced, the meeting was still well-used and evolved to include patients with other diagnoses. The survey confirms that most general paediatricians believe it improves patient care and would like the meeting to continue but that review of the format may be helpful. Particular considerations are to broaden the scope of the meeting beyond PIMS-TS, revise the timing and consider how to improve ease of access to the meeting for all.Further work will focus on evaluating patient numbers and diagnoses over the full period of the PIMS-TS MDT and adapting the format of the current MDT in response to the feedback received.
ABSTRACT
Introduction/Background: Young people with juvenile onset rheumatic disease are treated in paediatric centres until they are required to transfer to an adult centre. Transitional care is a process which begins in early adolescence and prepares young people for this change. There is a rapidly evolving evidence base to support transitional care for young people with long term health conditions with European rheumatology-specific guidance available. The third stage of transitional care, i.e. that which follows transfer to adult care, however, is the least researched. Description/Method: The aim of the study is to evaluate rheumatology service provision for the third stage of transition, i.e. young adult rheumatology provision, at a large NHS trust. A retrospective case-note review was conducted. Relevant patients were identified from young adult rheumatology clinic lists from 2017 to 2022. Of note, no clinics took place during the COVID 19 pandemic lock down in 2020 and transfer of patients during that time was postponed until face to face clinics resumed in adult practice. Patients were assigned study numbers and data was then collected from clinical letters, general correspondence and other annotations uploaded to the Electronic Patient Records (EPR). Patient records searched included those up to 24 years old on current adult rheumatology clinic lists. Discussion/Results: 86 patients (79.1% female, n = 68) were identified. The mean age at transfer was 17.1 years with 53.4% having inflammatory arthritis (n = 46). 59.3% (n = 51) had more than 1 diagnosis. 64% (n = 55) had no other named specialties involved in care at transfer. The median number of medications at transfer was 3, range 0-11. Of those taking medications, 86.7% (n = 72) were self-managing these.59.3% (n = 51) had a transfer letter. 29.1% (n = 25) had a transfer summary completed. 14% (n = 12) had no transfer documentation. Transition readiness checklists were identified in 41.9% records (n = 36). At the time of transfer, copy clinic letters were addressed solely to parents in 4 (4.7%).Young people had attended a median of 5 appointments (range 1-12) in the 12 months prior to transfer. 59.3% (n = 51) attended more than 50% of these appointments independently. 26.7% (n = 23) did not attend between 1-2 of their scheduled appointments in the 12 months pre-transfer.The mean duration between last paediatric and first adult appointment was 4 months (range 1-12). 47.7% (n = 41) did not attend at least one appointment in the 12 months post-transfer, with 23.3% (n = 20) not attending 3 or more appointments.67% (n = 58) of the final paediatric letters covered at least one of 11 psychosocial topics, with a median of 2 topics covered (range 1-5). In the first adult clinic letter a median of 3 topics (range 1-7) were covered in 82.6% (n = 71) letters.Around the time of transfer, disease activity was addressed in only 18 patients (20.9%) with a median score for Physician Global Assessment of 0 (0-10). 36% of patients (n = 31) had a CHAQ score documented, median score 0.5 (0-1.875). 29.1% (n = 25) had pain scores recorded, median 16, range 0-87. Self-reported wellbeing scores were recorded for 23.3% (n = 20), median 16.5, range 0-75. Key learning points/Conclusion: We describe a cohort of young people recently transferred from paediatric rheumatology care with the majority having inflammatory arthritis, being female and being on medication. A third had other specialties involved thus requiring greater coordination at the time of transfer. Transitional care preparation appeared effective with the majority seeing professionals independently prior to transfer, self-managing their medication and in receipt of clinic letters copied to them rather than their parents. Documentation of transitional care is important for multidisciplinary care but was sub- optimal with less than half of the records having transition check lists and a minority with formal transfer documentation. With limited clinic time and a childhood onset disease, a brief summary of relevant information including previous medications tried is important for the adult team and core to current transitional care guidance.The time between last paediatric and first adult appointment has been reported to be important in transitional care and it was reassuring to see this was a median of 4 months. There were higher rates of non-attendance in the young adult clinic compared to paediatrics which could reflect this wide range for continuity and will be an important area for future attention to ensure engagement of young people and the avoidance of lapses in care and potential disease flares. Disease activity was poorly documented in the peri-transfer period however, so it is difficult to comment on prevalence of uncontrolled disease at this time.Documentation of routine psychosocial screening was better post transfer but may reflect that these appointments are essentially a new patient appointment and therefore reflects the adult team getting to know the young person.This service evaluation has therefore identified areas of good transitional care practice as well as areas for improvement in this service and will be a useful baseline for future development.
ABSTRACT
Introduction/Background: A paediatric rheumatology multi-centre survey was conducted to understand the impact of COVID-19 on services and provide useful learning points that could change future practice. The survey focused on clinicians' views of the pandemic. The aim of this study was to gather the perspectives of young people regarding the results of the initial survey. This was done via a group discussion with members of the national youth advisory panel for adolescent rheumatology – Your Rheum. It is important when evaluating service provision that not only the clinician’s perspective but the patient’s voice is heard. Description/Method: The initial survey was sent, in August 2021, to Consultants in all UK paediatric rheumatology centres, to the paediatric rheumatology trainees network and to the JIA topic specific group members via email. 20 staff responded (17 consultants and 3 trainees at registrar level) across the 4 UK nations. Results of the survey showed changes to the frequency of blood monitoring (n = 17), an increase in disease flares (n = 4) with all respondents reporting changes to the type of consultation used with a large increase in the use of virtual consultations. Increases in clinic waiting lists due to capacity issues were also reported (n = 7). 15 respondents reported changes in steroid usage for flare management with more ward based steroid injections performed and an increase in the use of oral steroids due to theatre unavailability.The online discussion group held with ‘Your Rheum’ members consisted of 9 Young People (YP) aged between 12-24 years. The discussion group was facilitated by a research assistant, paediatric rheumatology trainee and a consultant paediatric rheumatologist. A number of statements with Agree/Disagree/Unsure options were provided with an opportunity to vote on each statement. A follow up discussion was held after each statement around the issues raised. The online tool Mentimeter was used to form a word cloud on YP experiences of the pandemic which was followed by breakout rooms to facilitate further small group discussions. Discussion/Results: In contrast to the survey results which revealed that clinicians perceived that YP preferred virtual (telephone or video or combination of both) consultations, young people in ‘Your Rheum’ varied in their responses with the majority of comments describing that it depended on the clinical context (if unstable or stable disease) with virtual appointments being preferable when their disease was stable. YP also reported issues with virtual appointments including difficulties with phone signal, not being able to obtain a specific time for appointments (varied time slots), issues for YP with hearing difficulties as well as one YP commenting it is “easier to lie to the doctor and just say everything is going really well”. Negative points raised with face-face appointments included longer waiting times and the time spent travelling to appointments.The majority of young people agreed that changes to the normal pattern of blood monitoring was concerning as this could lead to a possible increase in flare of conditions. Specific comments including accessibility to appointments was difficult during the pandemic with the additional fear of getting COVID-19 if attending the hospital for blood monitoring.YP used a variety of words to explain their experiences of rheumatology services during the pandemic including: ‘rushed’, ‘frustrating’, ‘stressful’, ‘virtual’, ‘chaotic’, ‘poor communication’, ‘inaccessible’ but also ‘COVID safe’. Key learning points/Conclusion: Young people with rheumatic diseases offered different insights to the initial clinician survey findings highlighting the importance of considering their opinion as well as that of professionals when considering service provision and evaluation.Flexibility is essential for young people and a hybrid approach with virtual/face to face appointments is key. Overall YP prefer face-face but are willing to have virtual consulta ions depending on the nature of issues needing addressed and the stability of disease.Experiences of poor communication between YP and health professionals/hospital has always been a theme in their experiences to date but has worsened since COVID-19.YP within this group discussion preferred to have blood monitoring performed at regular frequencies (similar to pre-pandemic) but did have concerns about getting COVID-19 by attending these appointments during the pandemic. It is important that YP are encouraged and reassured about attending appointments whilst ensuring COVID-19 safe precautions.
ABSTRACT
Background/Aims Your Rheum is a UK young person's research advisory group, for those aged 11-24 years and diagnosed with a rheumatic condition. Prior to the COVID-19 pandemic, Your Rheum engaged with its members and researchers at face-to-face meetings, offering online activities to enable broader involvement. Aim(s) to explore the advantages and disadvantages of conducting research involvement activities virtually, from the perspectives of both young people and researchers. Methods Online surveys were sent to Your Rheum members and researchers, who have engaged with the Group virtually over the past 12 months. 8/ 16 young people responded and 3/6 researchers. Results Many young people commented on the convenience of meetings taking place virtually, allowing more young people to be involved regardless of location. Some highlighted that face-to-face meetings were often too far to travel to. For example. as one young person highlighted 'no travel is required so it is much less of a whole-day commitment, meaning it is much easier and more likely that I will be able to attend.' Similarly, researchers who responded also stated the convenient aspect to conducting virtual activities. Additionally, for some young people, speaking online is easier and more comfortable than face-to-face communication;with some expressing, there is less pressure to contribute to discussions. One researcher noted a positive feature was the ability to switch cameras off, helping younger or quieter members to participate. However, a number of young people felt the opposite was true and have found virtual meetings difficult to contribute to, 'it is more stressful everyone is looking at you and no one else is speaking. The format of having meetings online also makes the whole event feel much more formal which means that it can be quite intimidating to speak.' Difficulty building virtual relationships and connections was a significant disadvantage. This was highlighted by over half of respondents, who reported that it is easier to get to know others in person as you have the opportunity to deviate from the topic being discussed, allowing for natural conversations to occur. As one young person poignantly noted, online meetings 'lacking true human connection'. From a researcher perspective, the subtle insights gained from face-to-face interactions were missing. Conclusion This study has highlighted strengths of conducting research involvement activities virtually. For example, logistics and convenience, and for some young people, the development of personal skills such as speaking to others. However, the formal and rigid nature of virtual meetings makes interacting and connecting with other people difficult. Moving forward, Your Rheum will take a blended approach to activities (frequent virtual meetings, as well as bi-annual face-to-face meetings). When planning virtual meetings, consideration to social interactions and opportunities to get to know one another remains important for young people.
ABSTRACT
Background/Aims Your Rheum is a national youth advisory group for adolescent and young adult rheumatology, to ensure meaningful involvement of young people at all stages of research. It was established in 2016 as a result of nationwide research, which reported that young people with rheumatic conditions wanted to be actively involved and had clear opinions of how they wanted to be involved and the priorities for such research. Young people ageing-out of the group remains challenging in view of the national nature of the group and was further compounded by the impact of the COVID-19 pandemic, which prevented the face-to-face meetings of the group. The aim of this project was to develop a short animation detailing what Your Rheum is about to encourage young people to join. Methods Content for the animation was gathered at a virtual Your Rheum meeting and via an online survey sent to members. A smaller group of members (n=4) then worked with the Your Rheum facilitator and a national animation company, More Than Minutes, to create a script, storyboard, to choose imagery, colour schemes and discuss a voiceover. The animation was subsequently revised in the light of feedback from the young people. Results Key areas of content included: who can get involved in Your Rheum and membership;the different ways the group works with researchers for example group virtual and face-to-face activities, individual online activities;examples of different projects and topics of research discussed;why it is important to involve young people in research;how to contact the Your Rheum team. It was important to ensure the animation imagery was bright, fun and highlighted diversity. Language used in the film had to be clear and simple to understand, to enable young people from the age of 11 years upwards to relate. Subtitles on the video were also an important feature. The animation was successfully launched in September 2021 - [https://youtu.be/ Y8OqmEJZ9Eo] Conclusion It is important to harness the experience and opinions of young people at all stages of research including recruitment strategies and dissemination, as this can result in resources that truly resonant with this age group.
ABSTRACT
Introduction: Your Rheum is a UK young person's research advisory group, for those aged 11-24 years and diagnosed with a rheumatic condition. Prior to the COVID-19 pandemic, Your Rheum mostly engaged with its members and researchers at face-to-face meetings twice a year, offering online activities to potentially enable broader involvement. Objectives: To explore the advantages and disadvantages of conducting research involvement activities virtually, from the perspectives of both young people and researchers. Methods: Online surveys were only sent to Your Rheum members and researchers, who have engaged with the Group virtually over the past 12 months. 8/16 of these young people responded;1 male, 7 female;age range 16-22 years and 3/6 researchers representing different research projects. Results: Many young people commented on the convenience of meetings taking place virtually, allowing more young people to be involved regardless of location. Some highlighted that face-to-face meetings were often too far to travel to and therefore required a significant commitment to attend. For example as one young person highlighted in regards to virtual meetings, no travel is required so it is much less of a whole-day commitment, meaning it is much easier and more likely that I will be able to attend. Similarly, researchers who responded also stated the convenient aspect to conducting virtual activities. Additionally, for some young people, speaking online is easier and more comfortable than face-to-face communication;with some expressing, it is not such an intimidating environment and there is less pressure to contribute to discussions. Using interactive tools on virtual platforms, such as breakout rooms, is another positive aspect of online meetings. One researcher noted a positive feature was the ability to switch cameras off, helping younger or quieter members to participate. However, a number of young people felt the opposite was true and have found virtual meetings difficult to contribute to, it is more stressful as everyone is looking at you and no one else is speaking. The format of having meetings online also makes the whole event feel much more formal which means that it can be quite intimidating to speak. Difficulty building virtual relationships and connections was a significant disadvantage. This was highlighted by over half of respondents, who reported that it is easier to get to know others in person as you have the opportunity to deviate from the topic being discussed, allowing for natural conversations to occur. As one young person poignantly noted, online meetings seem to be lacking true human connection. From a researcher perspective, the subtle insights gained from face-to-face interactions were missing. Conclusion: This study has highlighted strengths of conducting research involvement activities virtually. For example, logistics and convenience, and for some young people, the development of personal skills such as speaking to others and contributing to group discussions. However, the formal and rigid nature of virtual meetings makes interacting and connecting with other young people difficult. Moving forward, a blended approach to Your Rheum activities is proposed ie the inclusion of frequent virtual meetings, as well as regular bi-annual face-to-face meetings (COVID-19 restrictions permitting). However, when planning virtual meetings, consideration to social interactions and opportunities to get to know one another remains important for young people.