Decisions and decisional needs of people with brain-heart conditions: Cross-sectional survey of patients and caregivers

May 24, 2025 from 10:55am EST to 11:25am EST

People with heart conditions (e.g., heart failure, arrhythmias) are at increased risk for brain/mind conditions (e.g. stroke, depression). Little is known about whether people know about this connection and how it impacts decision-making about their brain and heart health. We aimed to identify common decisions and decision-making needs of patients affected by brain-heart conditions or their caregivers. 

Our study was co-designed by researchers, patients/caregivers, and clinicians. We surveyed patients with a brain and/or heart condition and caregivers identified from outpatient clinics in two hospitals in Ottawa, Ontario and recruited on social media. Guided by the Ottawa Decision Support Framework, we assessed which health-related decisions they faced, factors making their decision-making difficult, and whether they experienced decisional conflict or decision regret using validated scales. We analyzed the data using descriptive statistics. 

As of November 2024, 36 patients and two caregivers responded to the survey. Preliminary results showed that 32 participants (91%) faced a decision in the last year. Decisions included lifestyle changes (n=11;34%), cardiac ablation (n=5;16%), medications (n=5;16%), and diagnostic tests (n=4;13%). Factors challenging their decisions included feeling that brain implications were never part of the conversation for their heart condition (n=12; 31%), difficulty discussing the decision with important others (n=10; 25%), and worrying about choosing the wrong option (n=8; 22%). Eight participants (21%) experienced significant decisional conflict and three (9%) had significant decision regret. Recruitment is ongoing. 

Patients/caregivers have unmet decision-making needs when integrating brain-heart healthcare options. Interventions need to be designed to meet these needs to support people facing brain-heart decisions.

Speakers / Panelists