key: cord-0074646-2z3zybx6
authors: Lewis, A; McCarthy, L; McCubbin, I
title: P133: TEENAGE WELL-BEING -- A VIRTUAL SUPPORT GROUP
date: 2022-01-31
journal: Hemasphere
DOI: 10.1097/01.hs9.0000821624.46523.13
sha: b95958e63c89daaf3ce08fe33a348c77983624e5
doc_id: 74646
cord_uid: 2z3zybx6

nan

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. The pandemic in 2020 and measures to control the COVID-19 virus led to many teenagers and Young People(YP) isolated from their friends, through shielding and extended home schooling. It has affected their mental health and wellbeing, with an increasing demand upon mental health services (BMJ 2021 ,Miller et al 2020 ,Jeffery et al 2021 .

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 | 2022; 6:S1 inclusion. Following the meeting, a summary and any material used was circulated to the whole group. Results: 13 meetings January-November 2021 (Initially weekly, however we changed to monthly over the summer as demand dropped off). Subjects covered include: COVID-19 & dealing with anxiety, stress, Low mood/dealing with sadness, Vaccine safety, fatigue, returning to school, Paintalking to people about your diagnosis.Attendance was variablewith the maximum being 6 young people. A short survey was circulated to try and identify what was working, what needed to change and to have input from the YP on content. As a result of this feedback, we moved to a different day of the week and a later session time. Summary: small numbers YP would regularly attend, parents commented they looked forward to this group, which we took to be a sign of success. Other attendees, joined sporadically on 1 or more occasions. We found the YP to be engaged. Most were happy to say hello and introduce themselves on camera but would then prefer the camera off. We didn't have anyone comment on difficulties with access, many used their smartphone devices. Session preapration was time consuming, but as we progressed, we became more efficient at re-using material and needing less 'team brief' time as we understood how the sessions ran. It is an expensive service, professional time wise. However, we haven't compared to using a clinic environment or education room on site, which would take more organising and possibly less availability. There are no transport cost or travel time, so equitable for all Conclusion: This has been a valuable service for a small cohort Background: The chronic transfusion regimen consists of procedures that take time and that significantly impact the quality of life of patients with thalassemia or sickle cell disease; sometimes these procedures are carried out in uncomfortable environments where the patient tries with his own means to get distracted or "estranged". Therefore, the need to pay attention not only to the strictly physical needs but also to the psychological, emotional and social needs of patients emerges with the aim of recovering valuable time "monopolized" by therapy by enriching the therapeutic path with activities capable of involving more the person. Aims: From this need and the opportunities offered by the digital technologies available today, the AREAL project was born, developed by the Italian startup Softcare Studios in partnership with the pharma company Novartis. AREAL consists of a gaming experience enjoyed in virtual reality thanks to the use of suitable VR viewers, designed in collaboration with medical staff to enhance the time spent in the hospital during the transfusion routine of young adult and adult patients. Methods: AREAL consists of three gaming activities developed to immerse the patient in a sensorially stimulating scenario different from the hospital one in which the user is forced to spend his time, and designed to stimulate cognitive skills (memory, reflexes, attention, auditory processing and visual, logic and association, spatial navigation), providing added value to the patient's engagement / entertainment and compensating for the near physical immobility required during the transfusion / medical procedure (Figure 1 ). AREAL also integrates elements of patient education in therapy and recommended lifestyle habits to promote their well-being, and is equipped with a social functionality thanks to which patients can play together with other patients in the same hospital or between hospitals. different, laying the foundations for building a delocalized patient community. Results: AREAL is currently in use in 3 pilot hospital centers in Italy, Padova, Genova, Napoli, where, over a period of 4 months, evidence will be collected on its impact on the therapeutic experience of patients, usability will be assessed and the integration in the staff work routine will be refined. doctor, with the ultimate goal of extending the concept of "care" not only to clinical but also emotional and psychological aspects during all the time spent in the hospital. 

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Irene Fylaktou, I 4 ; Hashim Halim-Fikri

A 14

Marina Kleanthous

Background: Accurate and consistent interpretation of sequence variants is integral to the delivery of safe and reliable diagnostic genetic services. To standardize the interpretation process, in 2015, the American College of Medical Genetics and Genomics (ACMG) and the Association for Molecular Pathology (AMP) published a joint guideline based on different lines of evidence for the classification of sequence variants in Mendelian diseases. The generality of this guideline necessitates the application of expert judgment when evaluating and weighing evidence for variant interpretation. The Clinical Genome Resource (ClinGen) assembles Variant Curation Expert Panels (VCEPs) to perform gene-and