Decisional Needs of Equity-Deserving Groups Diagnosed With Brain-Heart Conditions: A Mixed-Methods Study

Brain-heart conditions disproportionately affect equity-deserving groups. Disparities extend to health decision-making, yet little is known about the decisional needs of people from equity-deserving groups with brain-heart conditions.

In this study, we aimed to investigate the decisional needs of equity-deserving patients facing brain-heart health decisions.

We conducted an explanatory sequential mixed-methods study. Eligible participants were adults (≥18 years) from an equity-deserving group (eg, racialized; lesbian, gay, bisexual, transgender, queer or questioning, intersex, asexual, and additional sexual orientations [LGBTQIA+]; and living with disability), with a brain-heart condition, and faced a health decision in the past year. We analyzed quantitative survey data using descriptive statistics and qualitative interviews thematically. Data integration occurred at various levels, with results represented through joint displays.

We surveyed 23 patients who participated in the parent study between June 2024 and March 2025. Thirteen (56.5%) had a brain-heart condition, 9 (39.1%) had a heart condition with risk factors for a brain condition, and 1 (4.3%) had a brain condition with risk factors for a heart condition. Decisions included lifestyle changes (n = 22, 95.7%), medications (n = 21, 91.3%), and diagnostic tests (n = 14, 60.9%). Seven experienced clinically significant decisional conflict (30.4%) and 6 experienced decision regret (30.0%). Challenges included worrying about choosing the wrong option (n = 12, 52.2%) and feeling that brain implications were never discussed (n = 10, 43.5%). Five participants were interviewed, and themes revealed barriers to decision-making, including information gaps, complex emotions, and poor communication.

Unmet decisional needs among equity-deserving patients with brain-heart conditions were decisional conflict, decision regret, and other factors. Decision support interventions tailored to equity-deserving groups could address unmet decisional needs.