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Kawasaki disease: patients' transition journey and recommendations for adult care
Nita Chahal1,2, Janet Rush3, Arnelle Lardizabal4
1Labatt Family Heart Centre, The Hospital for Sick Children, Toronto, ON, Canada.
Insights
Young adults with Kawasaki disease and coronary artery aneurysms face significant challenges during health care transition. Improved transition programs are needed to address self-care behaviors and patient experiences.
Area of Science:
- Cardiology
- Pediatric Cardiology
- Transition Medicine
Background:
- Kawasaki disease can lead to coronary artery aneurysms in children, increasing cardiovascular risk.
- Lifelong adult specialist follow-up is necessary post-pediatric care.
- Gaps exist in understanding patient experiences and outcomes during health care transition.
Purpose of the Study:
- To explore self-care behaviors and experiences of young adults after transitioning from pediatric to adult cardiac care.
- Utilized the Theoretical Domains Framework to guide the investigation.
Main Methods:
- Qualitative description approach using virtual, one-on-one interviews.
- 11 participants recruited post-health care transition from a Canadian regional cardiac center.
- Directed content analysis was employed to analyze interview data.
Main Results:
- Participants reported compounded health, psychosocial, and lifestyle challenges, alongside a sense of loss.
- Six key themes emerged, categorized within the Theoretical Domains Framework.
- Participants provided recommendations for enhancing health care transition programs.
Conclusions:
- Health care transition presents multifaceted stressors for young adults with Kawasaki disease and coronary artery aneurysms.
- Findings will inform the development of improved health care transition programs.
- Future programs will incorporate outcome evaluations to assess effectiveness.
Background:
Children who develop coronary artery aneurysms after Kawasaki disease are at risk for cardiovascular morbidity, requiring health care transition and lifelong follow-up with an adult specialist. Follow-up losses after health care transition have been reported but without outcome and patient experience evaluation.
Objective:
The Theoretical Domains Framework underpinned our aim to explore the required self-care behaviours and experiences of young adults' post-health care transition.
Methods:
A qualitative description approach was used for virtual, 1:1 interviews with 11 participants, recruited after health care transition from a regional cardiac centre in Ontario. Directed content analysis was employed.
Results:
Health, psychosocial, and lifestyle challenges were compounded by a sense of loss. Six themes emerged within the Theoretical Domains Framework categories. Participants offered novel health care transition programme recommendations.
Conclusions:
The realities of health care transition involve multiple, overlapping stressors for young adults with Kawasaki disease and coronary artery aneurysms. Our findings will inform a renewed health care transition programme and will include outcome evaluation.
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