P52 Survey on the experience of children and families attending the Paediatric Rheumatology daycare unit during the COVID pandemic

Abstract Introduction/Background Patients attend rheumatology daycare either for regular infusions or one episode depending on their treatment. A typical day for a child would involve observations, having a cannula put in and having the infusion before returning home. Due to the COVID-19 pandemic, there had been some changes to the day care pathway in our hospital including: only one parent being allowed to attend with their child; a strict timing schedule; COVID-19 testing prior to attending appointments. We felt it is vital to know the young person and the family’s perspectives of their experience at day care. Description/Method A special study module (SSM) medical student conducted a feedback survey over a 2 month period (December 2021 and January 2022). The aims and objectives were focused on the following: Whether the patients are receiving an appropriate level of care to optimise their experience at day-care. was their treatment given in a timely manner? Were there any delays, if so the reasons and actions taken to mitigate. 2 questionnaires were used, one for the patient and one for the parent/carers. The questionnaires were provided to the patient/carers during their admission by the admitting nursing staff. The medical student collected the questionnaires at the end of the day. Discussion/Results 39 patients attended the daycare during this period. 9 completed questionnaires were received. • Feedback from parents/carers: - Carers (100%) said they were happy with how they had appointment dates and most appointments took their availability and preferences into consideration. Due to COVID, families were notified of their appointment time only one day prior; this was highlighted as an area for improvement to ensure enough notice for the appointment time. - All parents (100%) agreed that they received enough information regarding their child’s appointment at daycare and this was delivered in an understandable manner. - 77.8% (7 out of 9) of parents did not experience long waiting times at their appointment. 22.2% (2 out of 9) parents said there were long waiting times at their appointment, and they were made aware of the reasons regarding the wait. The main reasons highlighted was busy ward with lots of patients. - 2 out of 7 parents indicate the care provided has remained the same pre- and post-pandemic. 3 out of 7 patients felt that their care has improved due to the following reason: treatment was completed more quickly; wards looked less busy as there were limited patients present at one time; there was a reduced length of stay compared to pre-COVID. • Children’s questionnaires: - 100% (9 out of 9) children were happy with the care received at daycare. - 22.2% (2 out of 9) children reported being worried/anxious due to having bloods and cannula taken (1) and missing school (1). - 5 out of 9 children had play therapist input and they all found it helpful. Key learning points/Conclusion Despite the COVID pandemic restrictions, all young people and families had a positive experience during their day care treatments. Effective communication and engaging the patients and families, and providing appropriate explanations to any delays in treatment is vital. The overall experience has provided an opportunity to reflect on the systems to manage the day care treatments, which we presume has been the case in many centres. Allied health professionals like play therapists and youth teams provide immense support to the young people who are attending day care for regular treatments. Provision of these services to all young people if appropriate will enable positive experiences to the patients. Limitation of this survey was a small sample size with the response rate of only 23%. Further survey over an extended period may provide more insight in this area.


REDUCTION OF BLOOD COVID-19 PANDEMIC
n Trust, Liverpool, University, Liverpool, Introduction/Background: Due to the immense pressures placed on primary care services and the additional shielding advice for patients on immunosuppressive treatments at the beginning of the COVID-19 pandemic, the rheumatology team at this paediatric tertiary centre decided to decrease the blood monitoring frequency for paediatric rheumatology patients on adalimumab and etanercept monotherapy to 6 monthly from 3 monthly. This service evaluation aims to identify whether this change in monitoring frequency led to a negative impact on patient safety. Description/Method: A record of all relevant patients was obtained using WellSkyV R dispensing records. Filters were applied in order to be able to compare data in patients who were on the drugs for sufficient time (6 months) both pre and post change in monitoring frequency (defined as May 2020). Derangements in blood results (neutropenia, thrombocytopenia and liver function tests [LFTs]) were recorded, categorised (clinically significant ¼ neutropenia <1 x 10 9 /L, thrombocytopaenia <100 x 10 9 /L, LFTs >3 fold upper limit of normal [ULN]) and compared. Adherence to suggested blood monitoring frequencies was evaluated pre and post change. It was deemed acceptable by the rheumatology team to be up to 1 month late for blood monitoring Discussion/Results: 585 blood tests were performed across 96 patients between April 2019 and October 2021. There were 101 blood derangements in total (17%, 101/585). 54.5% (55/101) of derangements occurred pre change, with 14.5% (8/55) being classed as clinically significant. Of the derangements that occurred post change, only 6.5% (3/46) were clinically significant and were observed in one patient. All clinically significant derangements (pre and post change) were related to the LFTs. All clinically significant derangements were observed in adalimumab patients. More patients adhered to the monitoring frequency post change (71% post change vs 55% pre change). Patients who had experienced clinically significant derangements pre change, did not show any post change. Key learning points/Conclusion: This service evaluation has many limitations that impede drawing definite conclusions. For instance, other potential causes of LFT derangements were not recorded. Dose and frequency of administration of adalimumab and etanercept were also not recorded. Nonetheless, changing to 6 monthly monitoring does not appear to have had a negative impact on patient safety. It appears that an increased frequency of blood monitoring in these patients results in an increase detection of mild blood derangements. The incidence of clinically significant derangements in LFTs was reduced post change and clinically significant neutropaenia and thrombocytopaenia were not detected. Lower frequency of monitoring benefits both the NHS, patients and their families. We conclude that for the majority of patients on adalimumab or etanercept monotherapy, the benefits of 6 monthly monitoring outweigh any potential risks and we will continue to apply this approach to our patients in the future. Introduction/Background: Patients attend rheumatology daycare either for regular infusions or one episode depending on their treatment. A typical day for a child would involve observations, having a cannula put in and having the infusion before returning home. Due to the COVID-19 pandemic, there had been some changes to the day care pathway in our hospital including: only one parent being allowed to attend with their child; a strict timing schedule; COVID-19 testing prior to attending appointments. We felt it is vital to know the young person and the family's perspectives of their experience at day care. Description/Method: A special study module (SSM) medical student conducted a feedback survey over a 2 month period (December 2021 and January 2022). The aims and objectives were focused on the following: . Whether the patients are receiving an appropriate level of care to optimise their experience at day-care. . was their treatment given in a timely manner? . Were there any delays, if so the reasons and actions taken to mitigate.
2 questionnaires were used, one for the patient and one for the parent/ carers. The questionnaires were provided to the patient/carers during their admission by the admitting nursing staff. The medical student collected the questionnaires at the end of the day. Discussion/Results: 39 patients attended the daycare during this period. 9 completed questionnaires were received.
• Feedback from parents/carers: -Carers (100%) said they were happy with how they had appointment dates and most appointments took their availability and preferences into consideration. Due to COVID, families were notified of their appointment time only one day prior; this was highlighted as an area for improvement to ensure enough notice for the appointment time.
-All parents (100%) agreed that they received enough information regarding their child's appointment at daycare and this was delivered in an understandable manner.
-77.8% (7 out of 9) of parents did not experience long waiting times at their appointment. 22.2% (2 out of 9) parents said there were long waiting times at their appointment, and they were made aware of the reasons regarding the wait. The main reasons highlighted was busy ward with lots of patients.
-2 out of 7 parents indicate the care provided has remained the same pre-and post-pandemic. 3 out of 7 patients felt that their care has improved due to the following reason: treatment was completed more quickly; wards looked less busy as there were limited patients present at one time; there was a reduced length of stay compared to pre-COVID.
• Children's questionnaires: -100% (9 out of 9) children were happy with the care received at daycare.
-5 out of 9 children had play therapist input and they all found it helpful. Key learning points/Conclusion: Despite the COVID pandemic restrictions, all young people and families had a positive experience during their day care treatments. Effective communication and engaging the patients and families, and providing appropriate explanations to any delays in treatment is vital. The overall experience has provided an opportunity to reflect on the systems to manage the day care treatments, which we presume has been the case in many centres. Allied health professionals like play therapists and youth teams provide immense support to the young people who are attending day care for regular treatments. Provision of these services to all young people if appropriate will enable positive experiences to the patients. Limitation of this survey was a small sample size with the response rate of only 23%. Further survey over an extended period may provide more insight in this area.