The Waiting Game: Adult Thoracic Transplant Patients' Experiences With Uncertainty

Abstract

SESSION TITLE: Transplant SESSION TYPE: Original Investigation Poster PRESENTED ON: Wednesday, November 1, 2017 at 01:30 PM - 02:30 PM PURPOSE: Little recent emphasis has been placed on the experiences of patients awaiting thoracic transplantation. However, these experiences are important to understand, especially as current transplant care often involves relocations, hospitalizations, technologic interventions, long waits, and rising out-of-pocket costs. Patients may be faced with high levels of ambiguity regarding symptoms flares, transplant timing, and prognosis. Uncertainty has been shown to interfere with self-management in other transplant populations, and self-management pre-transplant is an important predictor of medical adherence following transplant. We sought to understand the waitlist experiences of thoracic transplant patients using a qualitative research approach. METHODS: Participants were recruited from adult heart and lung transplant waiting lists between January and December 2016 and, following consent, completed semi-structured, individual interviews. Interviews were recorded, transcribed, and analyzed thematically using interpretive description (a systematic approach that begins with existing knowledge and theory, and then uses inductive reasoning to interpret meaning). Mishel’s Uncertainty in Chronic Illness theory provided an organizing framework for this study. RESULTS: Patients included 19 heart, 2 heart/lung, and 20 lung patients (median LAS=35.1, 49% male, 82% non-Hispanic white, 23% inpatient). “Waiting for transplant” under conditions of uncertainty can be presented in three domains: how patients make sense of their illness and its trajectory; strategies patients employ to cope with uncertainty and changes in social roles; and hopes and concerns about eventual return to health after transplant. Both in- and outpatient participants talked about limitations related to freedom, especially those caused by medical equipment (e.g., oxygen needs), and changes in relationships and hobbies. Patients often talked about their life before illness in terms of a sense of loss. Patients relayed actively managing emotions related to uncertainty by endorsing a one-day-at-a-time approach to waiting or increasing focus on other health-related behaviors that were within the patient’s control. Some patients exhibited distress with uncertainty ranging from ruminating thoughts to thoughts of self-harm. While they often reported appreciation for those who helped them or gratitude for what they were able to do, they also expressed frustration at the fact that they were no longer able to do things that they were good at, that they enjoyed, and that contributed to their sense of self. Consistent with Mishel's Uncertainty in Chronic Illness theory, factors impacting uncertaintly included duration of uncertainty, degree of social engagement/support, trust in the medical team, and perceptions/attitudes. Perceived self-care efficacy was related to these factors. CONCLUSIONS: Transplant researchers should consider coping with uncertainty an important target for future interventions and pay special attention to factors that might impact patients' ability to adapt. CLINICAL IMPLICATIONS: Transplant physicians should inquire about patient uncertainty and assist patients in developing effective coping strategies. DISCLOSURE: The following authors have nothing to disclose: Cassie Kennedy, Jennifer Ridgeway, Elizabeth Stevens, Janae Kirsch, Katherine Carroll, Roberto Benzo No Product/Research Disclosure Information