key: cord-0074648-ff3l2xg7 authors: Sophia Delicou, S; Aikaterini Xydaki, A; Konstantinos Manganas, K; Lucia Evliati, L; Chrysoula Kalkana, C; Michael Diamantidis, M; Achilles Manafas, A; Marianna Katsatou, M; Leonidas Roumpatis, L; Theodoros Aforozis, T title: P130: PROVIDING ADEQUATE HEALTHCARE TO PEOPLE WITH HEMOGLOBINOPATHIES DURING THE PANDEMIC (COVID-19) date: 2022-01-31 journal: Hemasphere DOI: 10.1097/01.hs9.0000821612.51153.9b sha: 3f446b72ce412261a53a669e3a000596da1227e2 doc_id: 74648 cord_uid: ff3l2xg7 nan Background: Countries around the world were dealing with an increase in demand for COVID-19 healthcare, which was exacerbated by fear, confusion, and mobility restrictions, all of which impacted the provision of health care for all conditions. Patients with severe diseases, such as hemoglobinopathies, seem to pose additional challenges. Aim-Methods: An anonymous questionnaire was developed and given to 130 patients from four Thalassemia and Sickle Cell Disease Units of the National Health System of Greece Hospitals using stratified random sampling technique. To perform statistical analysis on the questionnaires, the MedCalc 2018 application was used. Results: There were 130 participants (51 % women, 49 % males) with transfusion-dependent thalassemia (84%), transfused sickle cell disease (15%), 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 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? Languages of Care in Narrative Medicine. Words, Space and Time in the Healthcare Ecosystem Real-life patient journey in neovascular age-related macular degeneration: a narrative medicine analysis in the Italian setting Narrative medicine to integrate patients', caregivers' and clinicians' migraine experiences: the DRONE multicentre project COVID-19: Operational guidance for maintaining essential health services during an outbreak P131 REAL-TIME VACCINATION IMPACTS IN SICKLE CELL DISEASE: A REAL-WORLD PATIENT CASE STUDY FOR INFLUENZA AND COVID-19 VACCINATION