Outpatient volumes and medical staffing resources as predictors for continuity of follow-up care during transfer of adolescents with congenital heart disease

Research output: Contribution to journalArticle


Background: Providing continuous follow-up care to patients with congenital heart disease (CHD) remains a challenge in many settings. Previous studies highlight that patients with CHD experience discontinuation of follow-up care, but mainly describe a single-centre perspective, neglecting inter-institutional variations. Hospital-related factors above and beyond patient-related factors are believed to affect continuity of care. The present multicentre study therefore investigated (i) proportion of “no follow-up care”; (ii) transfer destinations after leaving paediatric cardiology; (iii) variation in proportions of no follow-up between centres; (iv) the association between no follow-up and outpatient volumes, and (v) its relationship with staffing resources at outpatient clinics. Methods: An observational, multicentre study was conducted in seven university hospitals. In total, 654 adolescents with CHD, born between 1991 and 1993, with paediatric outpatient visit at age 14-18 years were included. Transfer status was determined 5 years after the intended transfer to adult care (23y), based on medical files, self-reports and registries. Results: Overall, 89.7% of patients were receiving adult follow-up care after transfer; 6.6% had no follow-up; and 3.7% were untraceable. Among patients in follow-up care, only one remained in paediatric care and the majority received specialist adult CHD care. Significant variability in proportions of no follow-up were identified across centres. Higher outpatient volumes at paediatric outpatient clinics were associated with better continued follow-up care after transfer (OR = 1.061; 95% CI = 1.001 – 1.124). Medical staffing resources were not found predictive. Conclusion: Our findings support the theory of hospital-related factors influencing continuity of care, above and beyond patient-related characteristics.


  • Sandra Skogby
  • Philip Moons
  • Bengt Johansson
  • Jan Sunnegårdh
  • Christina Christersson
  • Edit Nagy
  • Per Winberg
  • Katarina Hanséus
  • Aleksandra Trzebiatowska-Krzynska
  • Shalan Fadl
  • Eva Fernlund
  • Kalliopi Kazamia
  • Annika Rydberg
  • Liesl Zühlke
  • Eva Goossens
  • Ewa Lena Bratt
External organisations
  • University of Gothenburg
  • Queen Silvia Children’s Hospital
  • University of Cape Town
  • Umeå University
  • Uppsala University
  • Karolinska University Hospital
  • Skåne University Hospital
  • Linköping University
  • Örebro University Hospital
  • Norrland University Hospital
  • Catholic University of Leuven
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Health Care Service and Management, Health Policy and Services and Health Economy


  • Adolescent, Continuity of patient care, Heart defects, congenital, Patient transfer, Transition to adult care, Young adult
Original languageEnglish
Pages (from-to)51-57
Number of pages7
JournalInternational Journal of Cardiology
Early online date2020
Publication statusPublished - 2020 Jul 1
Publication categoryResearch