key: cord-1049297-jz9st3po authors: Hall, Rhys; Meenan, John; Mihalca, Diana; Katumba, Alvin; Badle, Saket; Osakonor, Dede‐Kossi; Bello‐Sanyaolu, Oloruntoyin; Orebayo, Funmilayo; Lewis, Natasha; Chatterjee, Basabi; Coughlin, Stephanie; Tsitsikas, Dimitris A. title: The real impact of COVID‐19 on an East London Sickle cell population: results of a service‐wide survey date: 2021-09-14 journal: Br J Haematol DOI: 10.1111/bjh.17740 sha: 7058ac673d244ac0da74111e019def7422cab46a doc_id: 1049297 cord_uid: jz9st3po nan Since the beginning of the coronavirus disease 2019 (COVID-19) pandemic in early 2020, patients with sickle cell disease (SCD) have been considered a 'high-risk' group as a result of their impaired immunity, as well as the potential of co-existing comorbidities in the context of a systemic illness. To date, a lot of data on the effect of COVID-19 in SCD have been published [1] [2] [3] [4] including our own experience. 5 However, the focus has largely been on patients presenting to hospital while a lot less is known about the true incidence of COVID-19 including patients who tested positive in the community without seeking specialist input or symptomatic cases that never got tested. At the same time, widespread scepticism on social media around the COVID-19 vaccines has raised concerns around vaccination uptake by this vulnerable group of patients. We undertook a telephone survey contacting every adult patient with SCD registered in our service to address the following questions: (i) were they at any point diagnosed with COVID-19 by a positive reverse transcription polymerase chain reaction (RT-PCR) test and if so, was it in hospital or the community and when, (ii) did they develop symptoms suggestive of COVID-19 even if they did not have a test or tested negative. To meet this criterion, patients should have had simultaneously at least three of fever, dry cough, loss of smell/taste or myalgias, (iii) for patients with COVID-19 infection whether confirmed or suspected how long it took to return to their baseline state of health and finally, and (iv) had they received or were due to receive one of the licensed COVID-19 vaccines. A total of 265 of 315 (84%) registered active patients were contacted successfully and gave verbal consent for their anonymised data to be published (Appendix 1). In all, 109 patients were males and 156 females. A total of 151 (57%) patients had homozygous disease (HbSS) and 114 (43%) had HbSC/HbSb + /other. The median age was 41 years. A detailed analysis of the answer distribution according to genotype, age and gender can be seen in A total of 34 (13%) patients had a confirmed COVID-19 infection since the beginning of the pandemic. Of those, 16 were hospitalised, while 18 were diagnosed in the community including four asymptomatic patients. There were no patients treated in the community who had to be subsequently hospitalised. The course and outcomes of hospitalised patients are summarised in Table I . A total of 30 (11%) patients had a possible COVID-19 infection including four who were hospitalised. These patients had characteristic symptoms despite not having had a COVID-19 test or having had a negative one. The four cases that were treated in hospital also had suggestive radiographic and biochemical/haematological features. Overall, the incidence of COVID-19 infection in our population was 13-24%. As one patient with multiple comorbidities died, the COVID-19 associated mortality was 1Á6-2Á9%. In all, 24 (37Á5%) and 40 (62Á5%) of the cases, whether confirmed or possible, occurred between March 2020 and August 2020 (first wave) and between September 2020 and April 2021 (second wave) respectively. The higher infection rate observed during the second wave corresponds to the picture across the UK and may be related to more virulent strains of the virus but also relaxation of patients' adherence to shielding. Of the 60 symptomatic patients, 32 (53%) recovered within 2 weeks, 18 (30%) between 2 and 4 weeks, six (10%) between 4 and 8 weeks and four (7%) were ill for >8 weeks. The symptoms of those reporting long recovery were mostly associated with profound fatigue and pain characteristic of their SCD. Older patients were more likely to have delayed recovery (Fig 1B) . 'Post-COVID-19 syndrome' has been described in the general population. It is defined by the National Institute for Health and Care Excellence (NICE) as being when 'signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for more than 12 weeks and are not explained by an alternative diagnosis' (https://www.nice.org.uk/guidance/ng188). The incidence of post-COVID syndrome is estimated at between 10% and 35%; fatigue is the most common symptom experienced. 6, 7 Patients with SCD may be more prone to prolonged recovery due to their underlying condition. A total of 180 (68%) patients had already received one or both doses of one of the approved vaccines, while an additional 33 (12%) were keen to be vaccinated and still waiting for the first dose at the time they were contacted. In all, 16 (6%) patients were still undecided and 36 (14%) were not willing to be vaccinated. Taking into consideration patients already vaccinated, as well as those willing to be vaccinated still awaiting the first dose, the vaccination uptake in our present SCD population was 80%. This figure compares favourably to the uptake among people aged >50 years identifying as Black Caribbean and Black African (66Á8% and 71Á2% respectively) despite the younger age of our population (https://www.ons.gov.uk/releases/coronavirusandvaccina tionratesinpeopleaged50yearsandoverbysociodemographiccha racteristicengland). A patient-driven campaign with YouTube videos and virtual 'question and answer' meetings was pivotal in influencing patients' opinion as the willingness to receive the vaccine in January 2021 appeared extremely low (https://www.youtube.com/channel/UC_5zp4HFOAq30-FZw Op1EDA). The excellent vaccination uptake we have observed subsequently highlights the importance of patient empowerment and involvement, and how close collaboration between specialist services and robust patient groups can lead to better patient outcomes. Overall, we see that more than half of the patients with SCD and COVID-19 infection were treated in the community without requiring hospitalisation, while the vast majority of hospitalised patients made a full recovery. The vaccination uptake can be greatly improved when promoted by patients and patient groups that act as 'vaccination champions'; this is of great importance for the future as re-vaccination will almost certainly be required. Prognosis of patients with sickle cell disease and COVID-19: a French experience Coronavirus disease among persons with sickle cell disease Real-time national survey of COVID-19 in hemoglobinopathy and rare inherited anemia patients Clinical predictors of poor outcomes in patients with sickle cell disease and COVID-19 infection COVID-19 infection and sickle cell disease: a UK centre experience Management of post-acute covid-19 in primary care Symptom duration and risk factors for delayed return to usual health among outpatients with COVID-19 in a multistate health care systems network -United States We wish to express our great appreciation to Solace SG, the patient support group for all their hard work in promoting vaccination against COVID-19 among patients with SCD. Rhys Hall, John Meenan and Diana Mihalca collected data and co-authored the paper. Alvin Katumba analysed data and critically reviewed the manuscript. Saket Badle, Dede-Kossi Osakonor, Oloruntoyin Bello-Sanyaolu, Funmilayo Orebayo, Natasha Lewis, and Basabi Chatterjee collected data and critically reviewed the manuscript. Stephanie Coughlin provided data and co-authored the paper and Dimitris A. Tsitsikas designed and led the project.