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Original research
Transfer of congenital heart patients from paediatric to adult services in England
  1. Ferran Espuny Pujol1,
  2. Rodney C Franklin2,
  3. Sonya Crowe1,
  4. Kate L Brown3,4,
  5. Lorna Swan5,
  6. Christina Pagel1,
  7. Kate M English6
  1. 1Clinical Operational Research Unit, UCL, London, UK
  2. 2Paediatric Cardiology, Royal Brompton and Harefield NHS Trust, London, UK
  3. 3Cardiorespiratory, GOSH, London, UK
  4. 4Heart and Lung Division, Great Ormond Street Hospital NIHR Biomedical Research Centre’, London, UK
  5. 5Adult Congenital Heart Disease, Golden Jubilee National Hospital, Glasgow, UK
  6. 6Department of Congenital Cardiology, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  1. Correspondence to Dr Kate M English, Department of Congenital Cardiology, Leeds Teaching Hospitals NHS Trust, Leeds LS1 3EX, UK; kateenglish{at}nhs.net

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.

  • Epidemiology
  • Health Care Economics and Organizations
  • Quality of Health Care
  • Heart Defects, Congenital

Data availability statement

No data are available. Data are subject to data agreements that do not allow third-party access.

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Data availability statement

No data are available. Data are subject to data agreements that do not allow third-party access.

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Footnotes

  • Contributors All authors planned the overall study design and analysis. FEP undertook the statistical analysis. RF used his coding expertise to allocate patients to complexity groupings, with clinical assistance from LS and KE. All authors were involved in the writing and approval of the final manuscript. KE is acting as guarantor.

  • Funding This study was funded by The Health Foundation (grant #685009).

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research as part of the LAUNCHES QI project.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.