key: cord-0074647-j8fz758i
authors: Agrippa, O; Summers, K; Anie, K; Telfer, P; James, J; Low, E
title: P131: REAL-TIME VACCINATION IMPACTS IN SICKLE CELL DISEASE: A REAL-WORLD PATIENT CASE STUDY FOR INFLUENZA AND COVID-19 VACCINATION
date: 2022-01-31
journal: Hemasphere
DOI: 10.1097/01.hs9.0000821616.86814.35
sha: 5043d1b1414140839238016920256729c8f87eb8
doc_id: 74647
cord_uid: j8fz758i

nan

, and other conditions (1%). During the pandemic, patients' main concern was a lack of blood for transfusions (64 percent). The consistency of scheduled transfusions was not impaired (72 %) during the lock-down, while they were occasionally delayed (21 %) or did not appear at all (7 %). Similarly, when it came to systemic iron chelation therapy, 82 % were consistent, whereas 6 % stopped taking the drug on a regular basis because of worry of not having enough. The pandemic and lockdown had an impact on the annual follow-up of basic disease comorbidities, with 42% postponing the standard cardiac evaluation, 30% postponing magnetic resonance imaging of the liver-heart, and 23% cancelling major assessments or treatments such as biopsies or in vitro fertilisation (IVF) therapeutic interventions. Finally, 6% of scheduled surgeries had to be rescheduled. Conclusion: Patients with hemoglobinopathies received their scheduled transfusions without delay during the pandemic. A small percentage of patients modified their home medications because they were concerned about not being adequate during the pandemic. The significant consequence of the pandemic on our patients was the postponement of scheduled assessments and medical procedures required for chronic complications of their underlying condition. It is a chronic disease characterised by morphological RBC abnormalities in low oxygen due to β-globin mutation, causing vascular obstruction and complications including pain crisis and stroke [2] [3] [4] . The pandemic has seen patients with SCD face a higher risk of severe forms of COVID-19 infection and mortality 5 . Despite the approval of COVID-19 vaccinations, there is limited understanding of their impact in SCD. Evidence suggests that this has led to poor vaccine uptake due to patients feeling uncertain of their safety, potentially putting patients with SCD at risk, in addition to negatively impacting quality of life. Aims: To improve understanding of the real-world impacts of COVID-19 vaccination on both patient-reported outcomes and automatically recorded biometric datapoints in real-time, specifically in the context of Sickle Cell Disease, in order to support the improvement of patient confidence and vaccine uptake, thereby reducing COVID-19 risk. Methods: An FDA approved, CE marked smartwatch was provided to a 37 year old male with diagnosed HbSC following informed consent. This device was worn day and night over a 15-month period, automatically recording key biometrics including sleep quality, heart rate, and activity levels. This was supplemented by manual patient self-recording of SpO 2 levels and ECG traces through the device, as well as self-reported pain scores (0-10, low-high), psychological scores (0-10, lowhigh), and symptoms entered via a patient-reported outcomes (PRO) portal. Metrics were compared as a 7-day pre-vaccination average, day of vaccination snapshot, and post-vaccination 2-day and 5-day average, in order to track any changes in patient wellbeing across the period following vaccination with reference to their baseline. Results: Live monitoring of day-by-day indicators of patient health revealed that, following an initial spike post-COVID-19 vaccination, physiological and psychological wellbeing metrics, as well as real-time biometrics such as sleep quality and activity levels, returned to pre-vaccination levels within 5 days.

While pain scores remained statistically significantly high following influenza vaccination, this had returned to pre-vaccination levels over the 5-days following COVID-19 vaccine (Dose 1). Notably, while no significant difference was seen after 2-days of the second dose, pain scores had dropped significantly lower than even pre-vaccination levels post-Dose 2 in regards to the 5-day average. No significant changes were seen following the combined COVID-19 booster and flu vaccinations.

Our data identifies trends in the temporary impact of COVID-19 vaccination upon both PROs and real-time biometric datapoints. However, PROs highlighted a lesser impact in comparison with more traditional influenza vaccination. Furthermore, these impacts were seen to resolve within 5 days following vaccination, with post-vaccination SpO 2 , activity levels, sleep quality, and PRO averages returning to pre-vaccination levels following this initial spike. No ECG abnormalities were recorded pre-or post-vaccination.

In conclusion, this work indicates a visible but short-term impact of COVID-19 vaccination upon a patient with SCD, suggesting no heightened risk with COVID-19 vaccination in a previously poorly explored disease.

Quality of life in adults with sickle cell disease: an integrative review of the literature Rev Bras Enferm

Life for patients with myelofibrosis: the physical, emotional and financial impact, collected using narrative medicine-Results from the Italian 'Back to Life' project

Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents' experiences through a multicentre narrative medicine research

The patient-physician relationship. Narrative Medicine: a model for empathy, reflection, profession, and trust

Research studies on patients' illness experience using the narrative medicine approach: a systematic review

Narrative based medicine: why study narrative?

Cure Sickle Cell Initiative', National Heart, Lung, and Blood Institute 2. Ilesanmi et al

Brown et al, European Hematology Association Congress 2021 5. Panepinto et al

Tamblyn, W; Isabella Rahman, I

Background: At Guy's and St Thomas' NHS Foundation Trust, the Haematology Health Psychology Service (HPS) is embedded within the Clinical Haematology Department. As a centre of excellence for the care of people with Sickle Cell, HPS has been forward-thinking in its endeavour to find ways to provide integrated person-centred care since it was founded in 1997. This includes working alongside other healthcare professionals as part of a multi-disciplinary team on ward rounds and specialist clinics. A twice-weekly annual review clinic is held at Guy's Hospital for people with Sickle Cell in line with national guidelines. Aims: This poster presents the findings from a recent evaluation of the long-standing integrated psychology input at the Sickle Cell annual review clinic. The aim is to explore the outcomes of the annual review clinic for people with sickle cell and consider the benefits and limitations of this holistic model of care. Methods: This evaluation explores whether a need for further support was identified during the annual review appointment and what kind of support was offered. This could include a referral for psychological therapy in the service, a briefer intervention offered during or post the review or being signposted or referred to alternative sources of support. Clinical risk is also examined. Results: The analysis is currently still in progress. Summary/Conclusion: Although the analysis is still ongoing, the benefits of an increased presence of psychology in traditionally medical-only clinics will be discussed and the implications of a 'catch-all' approach will be explored; that many patients may have been seen for appropriate psychological support who might otherwise have not known it was available, or may have been reluctant to reach out for support. This will highlight the importance of holistic care when striving for excellence in person-centred Sickle Cell provision. In the Thames Valley we look after approx 200 YP with haemoglobinopathy disorders, a third between the ages of 13 & 18 years. A low prevalence area, a very wide geographical spread, making access to specialist services challenging. Access to technology and virtual connections, and a newly appointed psychologist led us to look at provision of an online wellbeing support group for teenagers. Aims: To invite teenagers between 13-18 years to a weekly 'drop in' group, where they would be able to access strategies and resources to support with varying aspects of well-being, as well as the opportunity to ask questions, in a safe supportive environment. Method: The group initially ran on a weekly basis for one hour at the end of the school day, led by 2 specialist nurses and a clinical psychologist. We covered subjects such as: stress, anxiety, low mood, fatigue, as well as more media related content like vaccinations and navigating social media. We used the Zoom platform, but then moved to Microsoft Teams, as this was the Trust's preferred platform. Our YP and their parents were contacted and asked if they would like to join and then they would be sent an invite via email. A reminder was also sent the day before the next meeting. Parents would be included in any email communication and resources; however, they were not encouraged to join the meeting. Meeting etiquette and ground rules were explained at the beginning of the meeting and with each new attendee, in order to establish trust and