ABSTRACT
Background The current COVID-19 pandemic has been an anxious time for children and young people (CYP) with end stage kidney disease and their families particularly as they were identified as a vulnerable group. Many transplant programmes closed and reopening brought new concerns for patients and professionals. We report patient experience on being transplanted during the pandemic. Objectives To obtain a better understanding of the concerns and experiences that CYP and families have about receiving a kidney transplant during the pandemic. Methods A questionnaire was sent to patients and families of 10 paediatric patients transplanted in the first six months of reopening our transplant programme. One patient refused transplant and one lacked social support to proceed with the transplant. Results All participants felt that their questions were answered before transplantation and 75% felt well informed about the SARS-CoV-2 effects on transplantation. 62.5% reported feeling nervous 37.5% were anxious 25% scared and 12.5% relaxed about transplantation during the pandemic. The majority of participants reported surgical complications being their biggest fear;two participants were worried about catching SARS-CoV- 2. 87.5% felt that care was delivered safely in inpatient and outpatient setting. 75% of participants found shielding easy. Overall 87.5% of patients were glad to have received a kidney transplant during the pandemic with one patient struggling with feeling isolated. Conclusions Receiving a kidney transplant can be a stressful experience particularly during a pandemic. Our results show that a significant number of patients felt scared that detailed counselling of CYP and families about risks and addressing their concerns related to SARS-CoV-2 contributed to a good patient and family experience on transplantation during the pandemic. Further studies are needed to look into the longterm effects of the pandemic on this vulnerable group of patients and strategies to mitigate them.