key: cord-0814652-q8e9seam
authors: Motta, Irene; Marcon, Alessia; Carrabba, Maria Domenica; Cassinerio, Elena; Migone De Amicis, Margherita; Branchi, Adriana; Giuditta, Marianna; Maira, Diletta; Fabio, Giovanna; Graziadei, Giovanna; Baldini, Marina
title: Management of chronic patients during the COVID-19 pandemic: the experience of a referral center for rare hematological disorders in the hardest-hit region in Italy
date: 2021-02-02
journal: Ann Hematol
DOI: 10.1007/s00277-021-04442-x
sha: 54986b5cdeed042e7df52280e3ffe6d0cdb7fbac
doc_id: 814652
cord_uid: q8e9seam

nan

because of the overwhelmed laboratories and the shortage of kits. Thus, only symptomatic cases were tested (Fig. 1 ). Those who tested positive and did not require hospital admission received their specific therapy in a dedicated COVID-19 area managed by the physicians of the Center, ensuring personalized treatment even during the pandemic [3] .

From March to May 2020, scheduled but deferrable consultations were canceled, as well as follow-up exams; the ongoing clinical trials and the psychological service were suspended.

Blood transfusions were guaranteed for more than 200 thalassemia and SCD transfusion-dependent patients, as well as replacement therapy for PID patients. Since intravenous immunoglobulin (IVIG) cannot be administered at home in Italy, some patients shifted from IVIG to subcutaneous immunoglobulin home treatment after training by the nurses of the Center. Since traveling across regions was prohibited, patients from other regions were temporarily transfused/infused in local hospitals (Fig. 1 ). Home treatment monitoring and issues were managed by phone or e-mail, unless hospital evaluation was required. The vast majority of patients appreciated the possibility of obtaining medical aid while minimizing hospital access and physical contact.

Our experience shows that improving patients' information from physicians and specialized nurses is essential. This approach allowed the continuity of care and the delivery of lifesaving therapies. The active participation of our patients and their support were pivotal.

We are now facing a new wave of COVID 19, and key-learning points from the first wave should be of particular value:

-Remote contact, and testing with nasopharyngeal swab in symptomatic subjects before accessing the hospital for treatment;

-Dedicated COVID+ areas for life-saving treatments to ensure individualized therapy; -Home delivery and monitoring of oral and IV drugs to avoid unnecessary hospital access; -The continuation of clinical trials, ensuring the safety of enrolled patients; -Psychological support for chronic fragile patients.

The COVID-19 pandemic is a unique, intense, personal, and professional emotional experience. The resilience of health care professionals demonstrated that we can reach our full human potential to care for rare, complex, and fragile patients. Institutions should ensure dedicated and specialized personnel, areas, and time for chronic patients' care.

Acknowledgements We thank all the nurses and the administrator of the Center, whose collaboration and energy are inspiring: Simona Carboni, Damiana Bellotta, Katia Bussoli, Simona Orlando, Paolo Paludetti, Roberto Saiani, Maria Tabini, and Marina Zarantonello. We thank all the patients whose support was essential. This work is generated within the European Reference Network on Rare Hematological Diseases (ERN-EuroBloodNet). FPA 739541.

Author contributions IM wrote the paper. AM, MDC, and MMDA collected the data. All authors take care of patients and contributed to critical revision and final approval of the version to be published.

Declarations All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This is an observational study. The Research Ethics Committee "Comitato Etico Milano Area 2" has confirmed that no ethical approval is required. 

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