Expectations and experiences of heart transplantation: insights from in-depth patient interviews

Background Advanced HF affects a growing number of patients, for whom heart transplantation (HTx) or LVAD implantation are often the only life-saving options. While HTx improves survival and quality of life, patients face significant physical and psychosocial challenges, including identity changes, anxiety, and limitations in social or work participation. A better understanding of patients’ expectations regarding post-transplant outcomes is essential to inform tailored interventions that optimize life after transplant. Purpose This study aimed to explore the expectations and experiences of patients after a HTx, focusing on psychosocial needs such as resilience, social support, self-efficacy, and preparation for post-transplant challenges. Methods Semi-structured, in-depth interviews were conducted with patients who had undergone HTx. The interviews lasted on average 47 minutes (range 33–72 minutes). Participants were purposively selected with guidance from the HTx care team to include both individuals who reported high satisfaction and those who reported disappointment with their transplant experience. Inclusion criteria were: age ≥18 years, HTx within the past 10 years, ongoing treatment at a university medical center in central Netherlands, and ability to provide informed consent. Patients were excluded if they had severe post-transplant complications affecting current functioning or insufficient Dutch language proficiency for an interview. Interviews were conducted at patients’ homes or in a quiet hospital setting, depending on the patient preference and audio-recorded via Microsoft Teams. Data were analyzed with content analysis. Results Eight patients participated (four men, four women) with a mean age of 51.3 years, mean time post-transplantation 4.7 years, and mean waiting-list time 3.1 years; five had a prior LVAD and two were listed urgently. All participants were married or cohabiting, and seven had children; three were employed. All participants had expected improved physical quality of life after HTx, with some reporting unrealistic expectations such as full recovery. Most reported to have experienced greater emotional impact than they had anticipated, including identity changes and altered partner roles. Social network changes, medication management, and adapting activities were common challenges. Expectations were influenced by personal outlook, family support, peer experiences, and interactions with healthcare professionals, while anxiety during the waiting period affected confidence in outcomes. Conclusion Patients with a HTx anticipated improved physical quality of life but frequently encountered unmet expectations regarding emotional adjustment, social roles, and return to work. Personal, social, and professional factors shaped expectations and coping strategies. These findings underscore the importance of tailored psychosocial support during the waitlist period to better prepare patients for post-transplant challenges.