Transfer of congenital heart patients from paediatric to adult services in England

Abstract

Objective: This study assessed the transfer of patients from paediatric cardiac to adult congenital heart disease (ACHD) services in England and the factors impacting on this process.

Methods: This retrospective cohort study used a population-based linked data set (LAUNCHES QI data set: 'Linking Audit and National datasets in Congenital Heart Services for Quality Improvement') including all patients born between 1987 and 2000, recorded as having a congenital heart disease (CHD) procedure in childhood. Hospital Episode Statistics data identified transfer from paediatric to ACHD services between the ages of 16 and 22 years.

Results: Overall, 63.8% of a cohort of 10 298 patients transferred by their 22nd birthday. The estimated probability of transfer by age 22 was 96.5% (95% CI 95.3 to 97.7), 86.7% (95% CI 85.6 to 87.9) and 41.0% (95% CI 39.4 to 42.6) for severe, moderate and mild CHD, respectively. 166 patients (1.6%) died between 16 and 22 years; 42 of these (0.4%) died after age 16 but prior to transfer. Multivariable ORs in the moderate and severe CHD groups up to age 20 showed significantly lower likelihood of transfer among female patients (0.87, 95% CI 0.78 to 0.97), those with missing ethnicity data (0.31, 95% CI 0.18 to 0.52), those from deprived areas (0.84, 95% CI 0.72 to 0.98) and those with moderate (compared with severe) CHD (0.30, 95% CI 0.26 to 0.35). The odds of transfer were lower for the horizontal compared with the vertical care model (0.44, 95% CI 0.27 to 0.72). Patients who did not transfer had a lower probability of a further National Congenital Heart Disease Audit procedure between ages 20 and 30 compared with those who did transfer: 12.3% (95% CI 5.1 to 19.6) vs 32.5% (95% CI 28.7 to 36.3).

Conclusions: Majority of patients with moderate or severe CHD in England transfer to adult services. Patients who do not transfer undergo fewer elective CHD procedures over the following decade.

Keywords: Epidemiology; Health Care Economics and Organizations; Heart Defects, Congenital; Quality of Health Care.

Figure 1

Inclusion and exclusion criteria. HES, Hospital Episode Statistics; NCHDA, National Congenital Heart Disease Audit; NHS, National Health Service.

Figure 2

Whole cohort estimated probability of transfer if alive. Overall estimate (left) and by complexity (right) over the follow-up period between the 16th and 22nd birthdays. The estimated probabilities conditional on survival of patients take into account the mortality and right-censoring of patients. Note all complexity conditional probability functions were significantly different pairwise (Pepe-Mori test p<0.001).

Figure 3

Outcomes by model of care and complexity. (A) Whole cohort by model of care. (B) Severe and moderate complexity by model of care. (C) Severe and moderate patients in the vertical model of care. (D) Severe and moderate patients in the horizontal model of care. The estimated probabilities conditional on survival of patients take into account the mortality and censoring of patients. For each subfigure, the pairs of conditional probability functions were significantly different (Pepe-Mori test p<0.001).

Figure 4

(A) Kaplan-Meier average (%, 95% CI) survival curves by transfer status at age 20. The sample is a subgroup of 4038 severe and moderate patients alive at age 20 and still followed by the data set (born before 1998/1999). (B) Cumulative probability functions of undergoing a further NCHDA procedure between the ages of 20 and 30 by transfer status at age 20. The sample for B is a subgroup of 3391 severe and moderate patients alive at age 20 and still followed by the NCHDA data set (born before 1997/1998). The two conditional probability functions were significantly different (Pepe-Mori test p<0.001). NCHDA, National Congenital Heart Disease Audit.