Patient Experiences and Perspectives of Their Decision-Making to Accept Lung Transplantation Referral: A Qualitative Study

Abstract

Providing early lung transplantation referral services should be considered to reduce pre-transplant mortality in patients with advanced disease. This study aimed to explore the reasons for lung transplantation referral decisions in patients and provide evidence for the development of transplantation referral services. This was a qualitative, retrospective, and descriptive study involving conventional content analysis. Patients in evaluation, listing, and post-transplant stages were interviewed. A total of 35 participants (25 male and 10 female) were interviewed. Four main themes were defined: (1) expectations for lung transplantation leading to the decision (a gamble for a silver lining, a return to normal life, and occupation); (2) facing uncertain outcomes (personal luck arranging everything; belief in success; incidents leading to “It’s decided then”; hesitation when making a decision due to fear); (3) facing various information from peers, doctors, and so on; (4) complex policy and societal support (providing transplantation referral services earlier, family attachment and oral approval responses contribute to the referral decision, and so on). The findings of this study might enrich existing referral services, including training for family members and healthcare providers, a checklist and package of critical events in the patient lung transplantation referral decision-making process, precision services based on behavioral personas, and a curriculum to enhance patient decision self-efficacy.