Feasibility and acceptance of electronic quality of life assessment in heart transplant recipients

Improved knowledge of the health-related quality of life (HRQoL) of heart transplant patients is needed. However, collecting such data is often challenging. As part of a larger project aiming to implement HRQoL tools for heart transplant patients in a national heart transplant registry, this study evaluated the feasibility and acceptability of collecting HRQoL via patient interviews and a pilot test of three questionnaire administration methods. Fourteen heart transplant recipients were asked about their experience with completing questionnaires and their general knowledge about QoL tools. Transcriptions of these interviews were analyzed using deductive thematic analysis, a cohort of heart transplant recipients was assigned to one of three QoL questionnaire delivery methods: e-mail, tablet, or Quick Response (QR) code. Participants completed two HRQoL questionnaires (the Medical Outcomes Study 12-item Short Form and the Medication Experience Scale in Immunosuppressants) using the assigned method and provided feedback on these tools. Interviews revealed five key themes related to HRQoL questionnaires: experience using them, perceived usefulness and purpose, desired characteristics, preferred administration methods, and specific HRQoL domains to be assessed. All recipients agreed that the questionnaire should be brief and easy to complete. In total, 34 heart transplant recipients agreed to participate, but only 19 patients (12 men) actually completed the study. Participants preferred completing the questionnaire in the hospital setting. Each of the three administration methods was considered acceptable by most respondents. The choice of a QoL measurement tool to be implemented within a heart transplant registry must take into account patient opinions to ensure successful long-term data collection. Electronic tools do not appear to represent a major barrier for patients.