Decisions and decisional needs of patients with combined brain-heart conditions: a mixed methods systematic review

Abstract Background/Introduction Many people experience both heart conditions (e.g., heart failure, irregular heart rhythms) and brain/mental health conditions (e.g., stroke, depression) together. This makes their health decisions more complex. Quality decisions depend on whether people are informed about their conditions and options, and whether their values for features and outcomes are considered. This study aimed to identify the types of decisions and decisional needs faced by people with combined brain-heart conditions, and their caregivers. Methods We conducted a mixed-methods systematic review following Cochrane guidance, with protocol registered in Open Science Framework. Using a co-production approach, we partnered with clinicians, patients, and caregivers. Searches of Embase, MEDLINE, CINAHL, and PsycINFO (January 2010–August 2024) identified primary studies. Eligible studies included combinations of atrial fibrillation, coronary artery disease, or heart failure with stroke, cognitive dysfunction, or mental health conditions. Two reviewers independently screened, extracted data, and assessed quality. We used content analysis to group decisions and decisional needs, mapping them to the Ottawa Decision Support Framework (ODSF) and Bujold’s (2022) taxonomy, adding new categories as needed. Results Four searches yielded 31615 citations; 18663 were screened after de-duplication. Of these, 18387 were excluded based on title/abstract, and 272 full texts were reviewed. Fifteen studies (from 16 articles) were included. Included studies were published between 2012-2024 (10 quantitative, 3 qualitative, 2 mixed methods), involved 4893 participants (patients: 78%, caregivers: 10%, clinicians: 12%) across 10 countries. Most studies were of moderate quality. Decisions included medication choices (e.g., anticoagulation, antihypertensives), mental health treatment, cardiac procedures (e.g., LVAD, ICD), and use of services (e.g., rehabilitation, heart failure care). Most decisional needs were mapped to the ODSF (e.g., uninformed, unclear values, unsupported, uncertainty). Several manifestations specific to brain-heart conditions emerged: unawareness of the brain–heart connection, lack of a combined diagnosis, skepticism about mental health options, fear of stigma associated with mental health conditions, stoicism or feeling overwhelmed by physical illness, and too many separate appointments for brain and heart care. Few studies analyzed findings by sex/gender, and most used these terms interchangeably. Conclusion Decisional needs for people with combined brain–heart conditions aligned with the ODSF. New manifestations emerged that were specific to brain-heart connection. These findings can inform user-centered development of decision support tools that address unique challenges in comorbid brain-heart care, including mental health considerations, reducing stigma, and supporting patients who struggle to process decisions due to cognitive or emotional burden.