Hospital resource utilization in a national cohort of functionally single ventricle patients undergoing surgical treatment

Abstract

Objective: The study objective was to provide a detailed overview of health resource use from birth to 18 years old for patients with functionally single ventricles and identify associated risk factors.

Methods: All patients with functionally single ventricles treated between 2000 and 2017 in England and Wales were linked to hospital and outpatient records using data from the Linking AUdit and National datasets in Congenital HEart Services project. Hospital stay was described in yearly age intervals, and associated risk factors were explored using quantile regression.

Results: A total of 3037 patients with functionally single ventricles were included, 1409 (46.3%) undergoing a Fontan procedure. During the first year of life, the median days spent in hospital was 60 (interquartile range, 37-102), mostly inpatient days, mirroring a mortality of 22.8%. This decreases to between 2 and 9 in-hospital days/year afterward. Between 2 and 18 years, most hospital days were outpatient, with a median of 1 to 5 days/year. Lower age at the first procedure, hypoplastic left heart syndrome/mitral atresia, unbalanced atrioventricular septal defect, preterm birth, congenital/acquired comorbidities, additional cardiac risk factors, and severity of illness markers were associated with fewer days at home and more intensive care unit days in the first year of life. Only markers of early severe illness were associated with fewer days at home in the first 6 months after the Fontan procedure.

Conclusions: Hospital resource use in functionally single ventricle cases is not uniform, decreasing 10-fold during adolescence compared with the first year of life. There are subsets of patients with worse outcomes during their first year of life or with persistently high hospital use throughout their childhood, which could be the target of future research.

Keywords: Fontan; Norwood; hospital length of stay; hospital resources; hypoplastic left heart syndrome; registry; single ventricle.

Graphical abstract

Total hospital resource use in f-SV from birth to 18 years old.

Figure 1

Flowchart of f-SV study population inclusion and exclusion steps and classifications. Identification of patients with and without HLHS, and classification into diagnosis types were done using an algorithm described previously^, and further in the Appendix E1. NHS, National Health System; f-SV, functionally single ventricle; HLHS, hypoplastic left heart syndrome.

Figure 2

Hospital resource use in patients with f-SV from birth to 1 year of life. Reported as median number of days/month within 1-month age intervals. A, Total days spent in the hospital (inpatient, outpatient, and A&E without admission, cardiac, and noncardiac/ambiguous). B, Number of inpatient days (cardiac and noncardiac/ambiguous). C, Days in ICU. D, Number of outpatient days (cardiac and noncardiac/ambiguous). A to C show the median (horizontal black line line), IQR (colored solid bars), and 1.5× IQR (dotted vertical lines), whereas outliers outside these limits are not shown. Corresponding numerical values, including means, number of death, and censoring in each age intervals, are detailed in Table E5, Table E6, Table E7, Table E8. ICU data are available for patients who were born in 2002 and onward. Patients were included in each consecutive age interval if they had data (linked and available) and were alive or not censored in the lower age limit. ICU, Intensive care unit.

Figure 3

Hospital resource use in patients with single ventricle from birth to 18 years of life. Reported as median number of days/year, within 1-year age intervals. A, Total days spent in the hospital (inpatient, outpatient, and A&E without admission, cardiac and noncardiac/ambiguous). B, Number of inpatient days (cardiac and noncardiac/ambiguous). C, Days in ICU. D, Number of outpatient days (cardiac and noncardiac/ambiguous). A to D show the median (horizontal black line line), I (colored solid bars bars), and 1.5× IQR (dotted vertical lines). Inset panels show years 1 to 18 of life, with adjusted scale, after excluding the first year. Outliers outside these limits are not shown. Corresponding numerical values, including means, number of deaths, and censoring in each age intervals, are detailed in Table E10, Table E11, Table E12, Table E9. ICU data are available for patients who were born in 2002 and onward. Patients were included in each consecutive age interval if they had data (linked and available) and were alive or not censored in the lower age limit.

Figure 4

Understanding single ventricle resource use and at-risk populations can improve decision making, patient care, and counseling. LAUCHES, The Linking AUdit and National datasets in Congenital HEart Services; NCHDA, National Congenital Heart Disease Audit; PICANet, pediatric intensive care audit network; ONS, Office for National Statistics; HES, hospital episode statistics.