Involving Families in Cardiac Care: Actionable Recommendations for Effective Remote Patient and Family Management (Preprint)

BACKGROUND In cardiovascular care, illness and recovery affect patients and their families, particularly within home-based Remote Patient Management (RPM). A recent American Heart Association scientific statement highlighted the importance of involving family systems, identifying digital technologies as a key opportunity. Despite this, research into families' needs and RPM implications remains limited. OBJECTIVE This study explored the lived experiences of patients and relatives across RPM-supported perioperative and myocardial infarction care trajectories. Based on these experiences, we co-designed actionable recommendations for Remote Patient and Family Management (RPFM) to address identified gaps. METHODS This qualitative study was conducted at a Dutch university hospital with over a decade of RPM experience. A multi-step co-design approach was employed, including focus groups with 24 participants (13 patients, 11 relatives). Subsequent thematic analysis and expert consensus discussions informed the identification of unmet needs and the development of actionable RPFM recommendations. RESULTS Experiences were summarised in a family-centred journey map. We identified 59 unmet needs across six domains: informational (n=17), psycho-emotional (n=17), social (n=11), physical (n=7), practical (n=6), and spiritual (n=1). The most significant gaps, described as ‘black holes’ in care and support, emerged during pre-admission and early post-discharge. Based on these needs, 74 RPFM recommendations were co-created. CONCLUSIONS This study highlights experience-based opportunities to enhance RPM-supported cardiac care, particularly in terms of informational and psycho-emotional support for families. Drawing on extensive RPM experience, we advocate a shift toward RPFM. For this, we propose a strategy that offers guidance for developing RPFM across cardiovascular and other care contexts.