key: cord-0858138-uz3z54bt authors: Volot, Fabienne; Soudry‐Faure, Agnes; Callegarin, Anamaria; Ksiazek, Eléa; Delienne, Stephanie; Cottin, Yves; Maynadié, Marc; Boulin, Mathieu title: Impact of first COVID‐19 lockdown on paediatric and adult haemophilia patients treated in a French Haemophilia Comprehensive Care Centre date: 2022-03-03 journal: Haemophilia DOI: 10.1111/hae.14526 sha: 53b69cae74ee77349618c0d8812f50912ebfb1ab doc_id: 858138 cord_uid: uz3z54bt INTRODUCTION: The coronavirus disease 2019 (COVID‐19) pandemic has created an unprecedented global health crisis. AIM: To investigate the impact of the 1(st) COVID‐19 lockdown on haemophilia patients in terms of symptoms, management, medication adherence, mental health and lifestyle behaviours. METHODS: A prospective cross‐sectional phone survey using a two‐part questionnaire was conducted in haemophilia patients (adults and children) followed‐up in a French Haemophilia Comprehensive Care Centre between May 5, 2020 and June 2, 2020 (CLEO CD study: NCT04390126). RESULTS: Among 284 haemophilia A or B patients with FVIII or FIX < 40% contacted for the study, 239 (84%) including 183 adults and 56 children participated to the survey. In 81% of children and 78% of adults, bleeding episodes remained unchanged or decreased. Medication adherence was 82.0% in adults and 98.2% in children. Non‐adherence concerned haemostatic agents in six patients and analgesics in three. Overall, 67% of adults and 71% of children felt as good as before lockdown. In both adults and children, the three major changes in lifestyle behaviours were: increase in screen time (49% and 57%), decrease in physical activity (43% and 48%), and weight gain (32% and 27%), respectively. CONCLUSIONS: Encouraging results were observed in terms of haemophilia symptoms, medication adherence, and mental health. Conversely, a negative impact was observed on lifestyle behaviours in a cohort of French haemophilia patients during the 1(st) lockdown. Although such effects have already been partly investigated in the general population, 5 among healthcare professionals, 6 and in patients suffering from cancer, 7 little is known on their global impact in haemophilia patients. [8] [9] [10] [11] [12] [13] [14] [15] Concerns have rapidly emerged regarding the pandemic's impact of and its deleterious consequences on healthcare access and global management of haemophilia patients. Moreover, the COVID-19 pandemic may also encourage adverse changes in health behaviours, such as decrease in physical activity 16 and sleep times, or increase in alcohol consumption, thereby altering the patients' general health and well-being. 17 We thus hypothesised that younger and older haemophilia patients might experience further discomfort, unusual anxieties, and peculiar fears during this pandemic. Therefore, we aimed to investigate the impact of the 1 st COVID-19 lockdown on haemophilia symptoms and management, as well as mental health and lifestyle behaviours. The Haemophilia Comprehensive Care Centre at Dijon University Hospital offers 24h/24 dedicated care, every day of the year, to haemophilia patients, involving a multidisciplinary team with three haematologists, one nurse, and two medical secretaries. Since the beginning of the first French COVID-19 lockdown, local protocols in accordance with the recommendations established by the World Federation of Haemophilia (WFH) for optimal management and follow-up of haemophilia patients were adopted in our centre. [18] [19] [20] [21] [22] In a first step, all of our 40 patients suffering from severe haemophilia A or B were contacted by phone. Calls primarily sought to reassure patients on the continuity of care during lockdown period. Patients were informed that the hospital pharmacy would continue to supply them with haemostatic treatments based on regular appointments. They were also informed that they had to attend the centre only in case of emergency (overt bleeding or haemarthrosis). Non-urgent faceto-face visits were performed by phone or reported after June 2020. Non-urgent surgeries were reported. Physical presence of the multidisciplinary team was limited to the strict necessary, with one full-time haematologist in the centre and another one in the haemostasis laboratory. Finally, all members of the multidisciplinary team could be contacted by phone at any time, if necessary. The The recruitment to the CLEO-CD study was previously described. [23] [24] [25] [26] The entire haemophilia patient population followed-up in our centre was invited to participate to the study. Inclusion criteria were: haemophilia A or B or haemophilia A or B carriers, with factors (F) VIII or IX activities < 40%; children aged between 1 and 18 years or adults over 18 years. Exclusion criteria were: non-response to three phone calls at different times of the day and different days of the week, impossibility to communicate orally due to language barrier or cognitive impairment, refusal to participate, and death. The phone survey was based on a structured two-part questionnaire, with a general and specific part. General and specific parts were slightly different for adults and for children. All questionnaires were tested and slightly modified before the beginning of the study. In the general questionnaire, patients were mainly asked about sociodemographic, global and mental health data, as well as lifestyle behaviours during lockdown. Specific questionnaires focused on symptomatic or therapeutic (haemostatic and analgesics) changes, health care, and psychosocial aspects for children. The 30-min interviews were conducted by different members of the multidisciplinary team of our centre (two haematologists, one nurse, and one medical secretary) with the help of two medicine/pharmacy students specifically recruited for the study. All interviewers were trained to CLEO-CD questionnaires before they started phone calls. Phone calls were performed between May 5 and June 2, 2020 (i.e., between the end of the 1 st lockdown period and the beginning of the Sociodemographic and clinical characteristics of the study population are summarised in Table 1 using polymerase chain reaction during the period, with all found to be negative. Of the 239 patients, 221 (92%) were living in a house or an apartment with terrace or garden, and only 18 (8%) in an apartment without terrace nor garden. Overall, 144 (60%) patients lived in a rural area. Only 29 (16%) adults were living alone. During the 1 st lockdown period, 21 scheduled face-to-face visits were performed by phone, nine were reported, and two were cancelled. Of the 27 scheduled interventions/surgeries, 11 were carried out with two of them in severe HB patients (one anal fistula and one coronarography). Sixteen non-urgent interventions/surgeries were reported or cancelled in one child (circumcision) and 15 adults (dental, n = 7; orthopaedic, n = 3; digestive, n = 3, gynaecologic, n = 1, varicose veins, n = 1). Haemophilia symptoms, haemostatic treatment adherence and mental health during the 1 st lockdown period are presented in Table 2 for adults and in Table 3 but 38% of children declared they presented difficulties at studying. In adults and in children (< 10 and ≥10 years), only two significant differences in terms of haemophilia symptoms, haemostatic treatment adherence and mental health depending on type and severity of the disease were observed (Tables 2 and 3 ). In HA adults, bleeding episodes were significantly different in severe, moderate and minor patients (43%, 42% and 22%, respectively; p = .04; Table 2 ); HA children were significantly less serene than HB children (53% vs. 84%; p = .02; Table 3 ). Only slight differences were observed for other criteria. As examples, severe HB adults presented a higher percentage of haemorrhagic signs increase (33%), joint pain increase (50%) and psychological distress (33% with a K6 score ≥5) ( Table 2 ); in children, increase in haemorrhagic signs and/or joint pain were not only observed in case of severe A or B disease (Table 3 ). In both adults and children, the three major changes in lifestyle behaviours included increase in screen time (49% and 57%), decrease in physical activity (43% and 48%), and weight gain (32% and 27%), respectively. In adults, a 16%-decrease in alcohol consumption was reported, as well as a 12%-increase in smoking/vaping (12%) ( Table 5 ). Limited data are currently available concerning the impact of COVID-19 on haemophilia patients and their management. 13 In particular, showing particular thoughts and worries regarding COVID-19 with significant differences between caregivers and patients. 12 We did not observe any significant differences in mental health data reported by children ≥10 years old or their parents when they were < 10 years old. More than two-thirds of adults and children felt good or very good at the time of our survey, in accordance with a low 16%percentage among adults considered as suffering from psychological distress (i.e., K6 score > 5). Moreover, for more than two-thirds of children, behaviours towards their parents and family were unchanged. We only observed that HA children were less serene than HB chil- Abbreviation: MD, missing data. We strongly believe that, in order to prevent negative lockdownrelated consequences in haemophilia patients, a strong hospitalcentred follow-up should be maintained. This is exactly the way our patients are being cared for by our dedicated staff. For more than 10 years, our reference centre has been involved with patients, seeking to develop therapeutic education though numerous individual and collective sessions. Despite the study's encouraging results, face-to-face visits were reimplemented in our centre, along with the concomitant development of telemedicine tools, in order to ensure maximum benefits for all of our patients. Due to practical reasons, the major limitation of our study is the lack of follow-up of the patients over a longer time period, in particular over the second and third lockdowns. Therefore, our results cannot be generalized to a longer timeframe. A second limitation is that the analysis was restricted to a single French centre. A third limitation is the absence of patient electronic diaries to verify in particular data on bleeding episodes and medication adherence as the e-diary is not yet available in France. The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions. 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The authors stated that they had no interests which might be perceived as posing a conflict or bias. Mathieu Boulin https://orcid.org/0000-0002-3504-7250