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Loss to Specialized Cardiology Follow-Up in Adults Living with Congenital Heart Disease

Cheryl Dickson1,2,4, Danielle Osborn1, David Baker1,4, Judith Fethney3, David S. Celermajer1,4, Rachael Cordina1,4,*

1 Department of Cardiology, Royal Prince Alfred Hospital, Sydney, Australia
2 Department of Cardiothoracic Surgery, Westmead Hospital, Sydney, Australia
3 Susan Wakil School of Nursing and Midwifery, The University of Sydney, Sydney, Australia
4 Sydney Medical School, The University of Sydney, Sydney, Australia

* Corresponding Author: Rachael Cordina. Email: email

Congenital Heart Disease 2024, 19(1), 49-63. https://doi.org/10.32604/chd.2023.044874

Abstract

Background: Much has been written about the loss to follow-up in the transition between pediatric and adult Congenital Heart Disease (CHD) care centers. Much less is understood about the loss to follow-up (LTF) after a successful transition. This is critical too, as patients lost to specialised care are more likely to experience morbidity and premature mortality. Aims: To understand the prevalence and reasons for loss to follow-up (LTF) at a large Australian Adult Congenital Heart Disease (ACHD) centre. Methods: Patients with moderate or highly complex CHD and gaps in care of >3 years (defined as LTF) were identified from a comprehensive ACHD database. Structured telephone interviews examined current care and barriers to clinic attendance. Results: Overall, 407 (22%) of ACHD patients (n = 1842) were LTF. The mean age at LTF was 31 (SD 11.5) years and 54% were male; 311 (76%) were uncontactable. Compared to adults seen regularly, lost patients were younger, with a greater socio-economic disadvantage, and had less complex CHD (p < 0.05 for all). We interviewed 59 patients (14%). The top 3 responses for care absences were “feeling well” (61%), losing track of time (36%), and not needing follow-up care (25%). Conclusions: A large proportion of the ACHD population becomes lost to specialised cardiac care, even after a successful transition. This Australian study reports younger age, moderate complexity defects, and socio-economic disadvantage as predictive of loss to follow-up. This study highlights the need for novel approaches to patient-centered service delivery even beyond the age of transition and resources to maintain patient engagement within the ACHD service.

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APA Style
Dickson, C., Osborn, D., Baker, D., Fethney, J., Celermajer, D.S. et al. (2024). Loss to specialized cardiology follow-up in adults living with congenital heart disease. Congenital Heart Disease, 19(1), 49-63. https://doi.org/10.32604/chd.2023.044874
Vancouver Style
Dickson C, Osborn D, Baker D, Fethney J, Celermajer DS, Cordina R. Loss to specialized cardiology follow-up in adults living with congenital heart disease. Congeni Heart Dis. 2024;19(1):49-63 https://doi.org/10.32604/chd.2023.044874
IEEE Style
C. Dickson, D. Osborn, D. Baker, J. Fethney, D.S. Celermajer, and R. Cordina "Loss to Specialized Cardiology Follow-Up in Adults Living with Congenital Heart Disease," Congeni. Heart Dis., vol. 19, no. 1, pp. 49-63. 2024. https://doi.org/10.32604/chd.2023.044874



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