Illness understanding in children and adolescents with heart disease

AIMS—To evaluate illness knowledge and understanding in children and adolescents with congenital and acquired heart disease, and whether the degree of understanding is related to age, sex, or complexity of the heart disease.
DESIGN—Prospective cohort study.
SETTING—Tertiary paediatric cardiac centre.
METHODS—Patients' understanding of their congenital heart disease was assessed in a representative sample of volunteers aged between 7-18 years using semistructured interviews based upon Leventhal's illness representation model.
RESULTS—63 of 69 interviews were suitable for analysis. There were similar numbers of boys and girls and a wide distribution of heart defects. Only 30% of patients had a good understanding of their illness; 77% did not know the medical name of their condition, and 33% had a wrong or poor understanding of their illness. Understanding was unrelated to age, sex, or the nature of the heart disease. Understanding of illness duration was significantly related to age, but not to sex or to the nature of the disease.
CONCLUSIONS—Illness understanding is poor in children and adolescents with heart disease, and many have an entirely wrong concept of their disease. Intensified efforts to ensure better patient and parental understanding are needed.


Keywords: understanding illness; children; heart disease     

Outcome following endoscopic transmural drainage of pancreatic fluid collections in outpatients

OBJECTIVE: To evaluate the performance of endoscopic transmural drainage of pancreatic fluid collections (PFCs) in outpatients. PATIENTS AND METHODS: We retrospectively reviewed 19 consecutive outpatient cases in 18 patients who underwent attempted endoscopic transmural drainage of PFCs by a single endoscopist at the Mayo Clinic in Rochester, MN, over a 5-year period (October 1998 to October 2003). All drainages were performed without EUS-guided entry, using an aspiration needle and no cautery. Two 10-Fr stents were placed after dilation of the entry site. RESULTS: The study group consisted of 12 men and 6 women (median age, 48 years; range, 28-79 years), with 14 cases of pseudocysts and 5 cases of pancreatic necrosis. Transmural drainage approaches included 13 transgastric, 5 transduodenal, and 1 combined transgastric/transpapillary. Drainage was established in 16 of 19 (84%) cases. Hospitalization was noted in 6 of 19 (32%) cases, with median hospitalization duration of 1.5 days (range, 1-19 days). Three patients were hospitalized for overnight observation only. In all instances, the decision to hospitalize was made while the patient was still in recovery. No deaths occurred. Follow-up imaging was available in 15 of 16 (94%) cases in which drainage was established, demonstrating PFC resolution in all 15. CONCLUSIONS: Endoscopic transmural drainage of PFCs can be performed safely and effectively in selected outpatients. It is our opinion that outpatient drainage of PFCs be considered only by experienced therapeutic endoscopists with readily available inpatient facilities. Future studies should seek to identify predictors of hospitalization and address cost-effectiveness.     

The discard of deceased donor kidneys in the UK

It is essential to minimize the unnecessary discard of procured deceased donor kidneys, but information on discard rates and the extent to which discard can be avoided are limited. Analysis of the UK Transplant Registry revealed that the discard rate of procured deceased donor kidneys has increased from 5% in 2002‐3 to 12% in 2011‐12. A national offering system for hard‐to‐place kidneys was introduced in the UK in 2006 (the Declined Kidney Scheme), but just 13% of kidneys that were subsequently discarded until 2012 were offered through the scheme. In order to examine the appropriateness of discard, 20 consecutive discarded kidneys from 13 deceased donors were assessed to determine if surgeons agreed with the decision that they were not implantable. Donors had a median (range) age of 67 (31–80) yr. Kidneys had been offered to a median of 3 (1–12) centers before discard. Four (20%) of the discarded kidneys were thought to be usable, and nine (45%) were possibly usable. As a result of these findings, major changes to the UK deceased donor kidney offering system have been implemented, including simultaneous offering and broader entry criteria for hard‐to‐place kidneys. Organizational changes are necessary to improve utilization of deceased donor kidneys.