Personalized care for every single patient with congenital heart disease: The time is now

Abstract

Fifty-one consecutive adult congenital heart disease (ACHD) patients attended a single site, day-case facility -in the midst of the Covid pandemic-for cardiac assessment tailored to their individual needs. All patients responded positively to our one to one invitation to attend, despite Covid restrictions, and to our anonymized questionnaire. The latter showed an overwhelming support for personalized care and for more patient education, support and empowerment. A subset of patients have since been enrolled in a pilot App with HUMA on an ACHD education, self-reporting and self-managing tool, with potential worldwide implications for ACHD care.

Keywords

• Adult congenital heart disease
• Health care models
• Personalized patient care
• Patient education
• Patient empowerment
• Clinical nurse specialist