key: cord-0943488-0irdlz66 authors: Dorfman, Lev; Nassar, Raouf; Rozenfeld Bar‐Lev, Michal; Shafir, Michal; Oseran, Ilan; Mozer‐Glassberg, Yael; Gavish, Rachel; Assa, Amit; Shamir, Raanan; Waisbourd‐Zinman, Orith title: Treatment adherence and behavior of pediatric liver transplant recipients during the COVID‐19 pandemic date: 2022-02-10 journal: Pediatr Transplant DOI: 10.1111/petr.14250 sha: 3fd780446c3c6cadbc5da5ad7b98d122d47b2634 doc_id: 943488 cord_uid: 0irdlz66 BACKGROUND: The COVID‐19 pandemic has affected medical care worldwide. Thus, we aimed to assess the impact of the COVID‐19 pandemic on pediatric LT recipients. METHODS: A cross‐sectional study based on a structured internet or telephone survey was conducted among pediatric LT recipients. Survey results were compared with results of a survey conducted among pediatric patients with IBD. RESULTS: Seventy‐six pediatric LT patients participated in the study. Of them, 58 (76.3%) reported fear of severe COVID‐19 infection due to LT or LT‐associated medications. Half of the patients reported needing emotional support. Most patients (51, 67.1%) reported strictly following official guidance, while more stringent protective measures were taken by 64 (84.2%) patients. None of the patients discontinued their medications due to COVID‐19. Compared to pediatric patients with IBD, a higher proportion of pediatric LT recipients reported fears of contracting severe COVID‐19 infection due to their illness or medications (45, 59.2% vs. 110, 45.1%). CONCLUSION: Among pediatric LT recipients a higher proportion reported fear of severe COVID‐19 infection, implemented additional protective measures and expressed a need for emotional support, compared to patients with IBD. Medical teams should provide adequate information and offer a support system for this vulnerable population. of nurseries and schools, was applied 2 months later, starting mid-May 2020. Medical care provision changed during the COVID-19 pandemic, to include more telemedicine-based practice and less frequent outpatient visits, as guided by the Center for Disease Control and Prevention. 3 These changes have affected all individuals with chronic diseases, including pediatric LT recipients. LT recipients are treated with chronic immunosuppressive therapy, turning them more vulnerable to infectious diseases. However, data are sparse regarding the effect of COVID-19 on these patients, including effects on daily life and routine. Moreover, data are conflicting as to whether LT recipients are at increased risk for severe COVID-19 infection. [4] [5] [6] The management of solid organ transplant recipients, infected with COVID-19, was diverse given no guidelines at that time, especially in pediatrics, and was changing along with the pandemic. The majority of adult patients were hospitalized and with some reduction in their immunosuppressive treatment. 7 In a consensus statement, the American Association for the Study of Liver Diseases advised that treating physicians should not make anticipatory adjustments to immunosuppressive therapy to LT recipients during the COVID-19 period. 8 At the end of the lockdown in Israel, the national pediatric association published a statement permitting school and nursery attendance by the general population, including immunocompromised individuals, such as solid organ transplant recipients. Despite the official recommendation of medical authorities to attend educational institutions, some LT recipients and their families considered avoiding nurseries and schools due to fear of infection and limited data regarding the possibility of more severe infection. In our study, we assessed the impact of the COVID-19 pandemic on healthcare provision, fear of COVID-19 infection, adherence to medical treatment, and compliance with officially recommended protective measures, in LT recipient children and adolescents early in the pandemic. The study was conducted after the first COVID-19 outbreak in Israel, prior to the second outbreak, at a time when there was no lockdown. Additionally, we compared this cohort to pediatric patients sharing similar characteristics of chronic disease with immunosuppressive therapy, namely IBD. As official recommendations for both groups were the same; we aimed to understand whether there are differences between the groups on how they perceive themselves in the pandemic. A cross-sectional study based on a structured internet or telephone survey was conducted of all pediatric LT recipients, aged 0-18 years, treated in the Institute of Gastroenterology, Nutrition and Liver Diseases in Schneider Children's Medical Center of Israel. Surveys were distributed early in the pandemic, after the first major COVID-19 outbreak in Israel and after the lockdown was released, between July 1, 2020, and September 10, 2020. Of 152 pediatric LT recipients who met study inclusion criteria, 76 patients or their parents participated in the study. The majority of surveys (53, 69.7%) were completed over the internet and 23 (30.3%) over the phone. The characteristics of the cohort are depicted in Table 1 . The median age of the study population was 11 years; four were aged 18 years. Forty (52.6%) were females. The median time after transplantation was 5.5 (IQR = 3.5-8.5) years. The survey questions and responses are presented in Table 2 . Most respondents (44, 57.9%) did not feel any difference in health service provision during the COVID-19 pandemic, while 6 (7.9%) noted a deterioration and 26 (34.2%) noted improvement. Figure 1 ). 10 In contrast, at the beginning of the pandemic, data were not consistent regarding risks of COVID-19 among pediatric LT recipients. The comparison to the descriptive findings among patients with IBD should be done with caution, due to age difference between the cohorts. The pediatric LT cohort was younger than the IBD cohort. As the survey was answered by one of the parents, it might reflect greater parental anxiety regarding younger children, or the families' perception that the LT recipients were "sicker" or at greater risk. The main implication of our study is universal-as it prompts clinicians to address families and patients fears and concerns, which might reflect their wellbeing and treatment adherence. Our study has several limitations including the lack of a control group of patients without immunosuppressive treatment who attended our pediatric gastrointestinal clinic during the pandemic and self-reporting of treatment adherence. Other limitations include the unvalidated questionnaire due to lack of validated tools for assessing during COVID-19 pandemic, age differences between the LT and the IBD groups and comparison of the LT group and a selection bias of patients who were interested to participate and answer the survey over the phone or via the internet. Additionally, only one parent was interviewed, thus precluding a full perspective for each patient. Despite the limitations, our study highlights the need to provide comprehensive and updated guidelines for patients, along with establishing programs to relate to patients and family stress and anxiety during those times. As our study was conducted early in the pandemic, further studies are needed and ongoing to assess the effect of COVID-19 pandemic in the long term, on the behavior and treatment adherence of pediatric LT patients, along with studies determining the effect of dedicated programs to provide comprehensive support. In conclusion, we found several distinct effects of the COVID-19 pandemic on pediatric LT recipients. These included high proportions who expressed fear of contracting severe COVID-19 infection, adopted more stringent protective measures than those recommended and reported high treatment adherence. We believe that further pro-active patient education and provision of emotional support can address these findings. None declared. OW and LD conceptualized and designed the study; MR, IO, YM, RG, AA, and RS participated in designing the study. LD, MS, RG, and RN participated in acquisition of data and analysis and interpretation of data. OW and LD drafted the manuscript. All the authors critically revised the manuscript and approved the final version. 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