Caring for Ukrainian refugee children with acute and chronic diseases

Abstract

Care for the increasing number of refugees from Ukraine is both a priority and a challenge for state authorities, social workers, and private initiatives. By March 29, 2022, more than 2·34 million refugees from Ukraine had crossed into Poland, most of them women and children.1Operational Data PortalUkraine refugee situation. Refugees fleeing Ukraine (since 24 February 2022).https://data2.unhcr.org/en/situations/ukraineDate: March 29, 2022Date accessed: March 30, 2022Google Scholar European countries must help prevent additional human catastrophes. Among these refugees is a vulnerable population of children with acute and chronic diseases and who must therefore be treated by general practitioners, paediatricians, internal medicine doctors, and other specialists. Some children will need immediate continuation of treatment for insulin-dependent diabetes or other rare diseases. Their general health status, and vaccination records, must be considered, and professional help for coping with traumatic experiences must be provided. This support will be needed immediately, before the question of general health insurance and reimbursement are resolved. The exact numbers of patients with inborn errors of metabolism in Ukraine are uknown. Apart from three rare congenital disorders (congenital hypothyroidism, cystic fibrosis, and congenital adrenal hyperplasia), the national screening programme includes only one metabolic disease, phenylketonuria, and therefore is far smaller in scope than existing screening programmes in many other European countries. Although the exact proportions of refugees with inborn errors of metabolism are unknown, the whole population of Ukrainian infants have been covered by the neonatal screening programme (Shkurko T, Center of Orphan Diseases, The Ukrainian National Children's Specialized Hospital Okhmatdyt, personal communication).2Hillert A Anikster Y Belanger-Quintana A et al.The genetic landscape and epidemiology of phenylketonuria.Am J Hum Genet. 2020; 107: 234-250Summary Full Text Full Text PDF PubMed Scopus (37) Google Scholar, 3Loeber JG Platis D Zetterström RH et al.Neonatal screening in Europe revisited: an ISNS perspective on the current state and developments since 2010.Int J Neonatal Screen. 2021; 7: 15Crossref PubMed Scopus (32) Google Scholar However, infants born 2 weeks before Feb 24, 2022, or after, might have not received neonatal screening or its results. As we learned from the refugee crisis in 2015, it is crucial that receiving countries implement systematic screening programmes for early identification and treatment of rare diseases, including inborn errors of metabolism, cystic fibrosis, and endocrinological disorders for immigrants to improve prognoses.4van Wegberg AMJ Trefz F Gizewska M et al.Undiagnosed phenylketonuria can exist everywhere: results from an international survey.J Pediatr. 2021; 239: 231-234Summary Full Text Full Text PDF Scopus (0) Google Scholar We recommend expanding neonatal screening (filter paper card with dried blood) according to national standards by the receiving countries as part of the routine immigration process. We also recommend this screening in all children younger than 1 year (or older, if the period of direct consequences of war in Ukraine extends this age) or if clinical symptoms are suspicious for metabolic disease (at any age). However, it is important to be realistic and to take into account both refugee numbers and the laboratory capacity of a receiving country such as Poland. European countries must cooperate to optimise neonatal screening and care of refugee children who show an atypical result. Questions from parents and health professionals can be directed at national or regional metabolic centres. We also recommend involving patient support groups as pathfinders. With their networks, patient support groups can effectively assist the integration of refugee families into both health-care systems and communities. FJvS, MG and AMJvW are members of scientific advisory boards. FM and FT declare no competing interests.