Sandra Skogby1, Philip Moons2, Bengt Johansson3, Jan Sunnegårdh4, Christina Christersson5, Edit Nagy6, Per Winberg7, Katarina Hanséus8, Aleksandra Trzebiatowska-Krzynska9, Shalan Fadl10, Eva Fernlund11, Kalliopi Kazamia12, Annika Rydberg13, Liesl Zühlke14, Eva Goossens15, Ewa-Lena Bratt16. 1. Institute of Health and Care Sciences, University of Gothenburg, Arvid Wallgrens Backe, Box 457, 405 30 Gothenburg, Sweden; Department of Paediatric Cardiology, Queen Silvia's Children's Hospital, Rondvägen 10, 416 50 Gothenburg, Sweden; KU Leuven Department of Public Health and Primary Care, Kapucijnenvoer 35, PB 7001, 3000 Leuven, Belgium. 2. Institute of Health and Care Sciences, University of Gothenburg, Arvid Wallgrens Backe, Box 457, 405 30 Gothenburg, Sweden; KU Leuven Department of Public Health and Primary Care, Kapucijnenvoer 35, PB 7001, 3000 Leuven, Belgium; Department of Paediatrics and Child Health, University of Cape Town, Klipfrontein Road Mowbray, Cape Town 7700, South Africa. 3. Department of Public Health and Clinical Medicine, Umeå University, 90185 Umeå, Sweden. 4. Department of Paediatric Cardiology, Queen Silvia's Children's Hospital, Rondvägen 10, 416 50 Gothenburg, Sweden. 5. Department of Medical Sciences, Cardiology, Uppsala University, Sjukhusvägen 7, 753 09 Uppsala, Sweden. 6. Heart and Vascular Theme, Congenital Heart Disease Group, Karolinska University Hospital, Stockholm, 171 76 Solna, Sweden. 7. Department of Paediatric Cardiology, Karolinska University Hospital, Eugeniavägen 23 C8:34, 17176 Stockholm, Sweden. 8. Department of Paediatric Cardiology, Skåne University Hospital, Barnhjärtcentrum avd 67, 221 85 Lund, Sweden. 9. Division of Cardiovascular Medicine, Department of Medical and Health Sciences, Linköping University, Sjukhusvägen, 581 85 Linköping, Sweden; Department of Cardiology, Department of Medical and Health Sciences, Linköping University, Sjukhusvägen, 58185 Linköping, Sweden. 10. Department of Paediatric and Women's Health Care, Örebro University Hospital, 701 85 Örebro, Sweden. 11. Department of Clinical and Experimental Medicine, Division of Paediatrics, Crown Princess Victoria Children's Hospital, Linköping University, 581 85 Linköping, Sweden; Department of Clinical Sciences Lund, Lund University, Skåne University Hospital, Department of Paediatric Cardiology, 221 85 Lund, Sweden. 12. Department of Paediatric Cardiology, Uppsala University, Sjukhusvägen 85, 75185 Uppsala, Sweden. 13. Department of Clinical Sciences, Unit of Paediatrics, Umeå University, Umeå University Hospital, 90185 Umeå, Sweden. 14. Division of Paediatric Cardiology, Department of Paediatric and Child Health, Red Cross War Memorial Children's Hospital, Faculty of Health Sciences, University of Cape Town, Klipfrontein Road Mowbray, Cape Town 7700, South Africa; Division of Cardiology, Department of Medicine, Groote Schuur Hospital, Faculty of Health Sciences, University of Cape Town, Anzio Road Mowbray, Cape Town 7700, South Africa. 15. KU Leuven Department of Public Health and Primary Care, Kapucijnenvoer 35, PB 7001, 3000 Leuven, Belgium; Research Foundation Flanders (FWO), Egmontstraat 5, 1030 Brussels, Belgium. 16. Institute of Health and Care Sciences, University of Gothenburg, Arvid Wallgrens Backe, Box 457, 405 30 Gothenburg, Sweden; Department of Paediatric Cardiology, Queen Silvia's Children's Hospital, Rondvägen 10, 416 50 Gothenburg, Sweden. Electronic address: ewa-lena.bratt@gu.se.
Abstract
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.
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.
Authors: Judson A Moore; Shreya S Sheth; Wilson W Lam; Alexander J Alexander; John C Shabosky; Andre Espaillat; Donna K Lovick; Nicole S Broussard; Karla J Dyer; Keila N Lopez Journal: Pediatr Cardiol Date: 2022-01-21 Impact factor: 1.838