Nick Barnes

Going home after infant cardiac surgery: a UK qualitative study

Objective To qualitatively assess the discharge processes and postdischarge care in the community for infants discharged after congenital heart interventions in the first year of life. Design Qualitative study using semistructured interviews and Framework Analysis. Setting UK specialist cardiac centres and the services their patients are discharged to. Subjects Twenty-five cardiologists and nurses from tertiary centres, 11 primary and secondary health professionals and 20 parents of children who had either died after discharge or had needed emergency readmission. Results Participants indicated that going home with an infant after cardiac intervention represents a major challenge for parents and professionals. Although there were reported examples of good care, difficulties are exacerbated by inconsistent pathways and potential loss of information between the multiple teams involved. Written documentation from tertiary centres frequently lacks crucial contact information and contains too many specialist terms. Non-tertiary professionals and parents may not hold the information required to respond appropriately when an infant deteriorates, this contributing to the stressful experience of managing these infants at home. Where they exist, the content of formal ‘home monitoring pathways’ varies nationally, and families can find this onerous. Conclusions Service improvements are needed for infants going home after cardiac intervention in the UK, focusing especially on enhancing mechanisms for effective transfer of information outside the tertiary centre and processes to assist with monitoring and triage of vulnerable infants in the community by primary and secondary care professionals. At present there is no routine audit for this stage of the patient journey.

Diagnosis and management of late complications after liver transplantation

Liver transplantation is the only effective treatment for end stage liver disease. In recent years the results of this major procedure have improved progressively in adults and children.1-4 At Addenbrooke’s Hospital, Cambridge, the children’s liver transplantation programme was started in January 1984. By December 1996, 200 children had received 284 liver grafts. In December 1998, 138 (69%) of these children were alive more than two years after their first liver graft, 120 were alive after more than five years, and 37 were alive after more than 10 years. In the past 10 years the one year survival rate has increased to 87%. After a successful transplant, children can return to full health and activity, with normal growth and development, but have to continue lifelong immunosuppression. Liver transplantation remains a difficult and dangerous operation. Most of the acute and life threatening problems occur in the first postoperative days and weeks, and therefore during the initial admission, but important later complications develop in as many as one third of children.3 4 As the number of children surviving transplantation has increased, many general paediatricians and general practitioners have become involved in sharing the care of these children with transplant units. It is therefore important that the local medical team is conversant with the potential late complications of transplantation. In this paper we review our own and the reported experience of late complications in children after liver transplantation. Guidelines on preliminary investigation and management are summarised in table 1, and fig 1 illustrates possible sites of biliary and vascular strictures and occlusions. View this table: Table 1 Medium and late term complications after liver transplantation in children Figure 1 Biliary and vascular complications after liver transplantation. IVC, inferior vena cava. The average hospital stay after liver transplantation is five weeks, but some children who have an uncomplicated course …

Neonatal infective endarteritis complicating patent ductus arteriosus.

Infective endarteritis complicating patent ductus arteriosus (PDA) is a rare occurrence. Most cases are reported in older children and adults, and there are little published data describing this condition in the preterm neonate. We outline the presentation, clinical course, management and outcome of two affected infants born at less than 27 weeks of gestation.