Purpose of the study The purpose was to explore the experience, information, support needs and decision-making of parents with congenital heart disease (CHD) during the COVID-19 crisis. Study design On-line survey design Setting An on-line survey with open/closed questions to explore the experiences of parents of children, as well as children and young people (CYP) with CHD during the COVID-19 crisis Patients Parents of children with CHD and CYP Results 184 parents and 36 CYP completed the survey. Parents worry about the virus (86.4%) vs. CYP (69.4%), whilst (89%) parents are vigilant for symptoms of the virus vs. CYP(69.4%). A thematic analysis of the qualitative comments covered 34 subthemes, forming eight-overarching themes: Virus 1)risk of infection, 2)information, guidance and advice, 3)change in health care provision, and 4)fears and anxieties; Lockdown and isolation 5)psychological and social impact, 6)keeping safe under lockdown, 7)provisions and dependence on others, 8)employment and income. Conclusions Parents and CYP were worried about the virus, although CYP less so. Parents and children however, were frustrated with the lack of specific and paediatric focused information and guidance, expressing disappointment with the adult centric information available. Parents also felt alone, especially with their concerns around the implications of cardiac service suspension and the implication for their childs health. In order to better support children and their families, resources need to be developed to address families and CYP concerns for their health during this pandemic.

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IntroductionSeveral studies suggest that maintenance enteral nutrition (MEN) post induction in Crohns Disease (CD) may have a role in prolonging remission. This retrospective study compares growth outcomes and relapse rate in CD patients supplemented with MEN versus an unsupplemented group.MethodsData including anthropometry, treatment type and outcome were collected for 78 patients at diagnosis, start of MEN, at 3 months and at 1 year from 2012–14. Patients who received MEN (n = 42) post induction therapy were compared with those on normal diet (ND; n = 36).Clinical remission was determined using a physician global assessment and blood biochemistry. Relapse was defined as a change in medication due to symptoms. Data are presented as median values.ResultsAge at diagnosis was 13 years, 62/78 (79%) were male. All groups had similar rates of clinical remission post induction therapy. The length of MEN was 3 months. The energy content of MEN was 635kcals representing 33% of energy requirement. 32/42 (76%) MEN patients received EEN as induction therapy, 7/42 (17%) received PEN and 3/42 (7%) steroids.Abstract G46(P) Table 1Relapse rates, HAZ and BMIZ in MEN and ND groups from diagnosis to 1 yearDiagnosisStart of MEN3 months1 yearNo of patients relapsing at less than 6 monthsMEN (n = 42)HAZBMIZ- 0.34-1.63**- 0.23- 0.56- 0.26- 0.28- 0.31- 0.30**10/42* (24%)ND (n = 36)HAZBMIZ- 0.28- 0.63***- 0.32- 0.08- 0.360.16- 0.32- 0.20***19/36* (53%)*P = 0.009 **MEN p < 0.001; ***ND p = 0.0224% of MEN group relapsed within 6 months of diagnosis versus 53% ND (p = 0.009). Body mass index z score (BMIZ) significantly improved in both groups (MEN: p < 0.001; ND: p = 0.02). There were no differences in height-for-age z scores (HAZ).ConclusionCD patients treated with MEN who received EEN or PEN as induction therapy were less likely to relapse within 6 months of diagnosis. BMIZ improved towards normal in both groups. Prolonged nutritional support from diagnosis may extend length of remission.