Health-Related Quality of Life among Patients with Mechanical Circulatory Assistance: Clinician Perspectives

Abstract

Purpose There is a lack of validated outcome measures that assess health-related quality of life (HRQOL) among patients with mechanical circulatory support (MCS). The purpose of this qualitative study was to obtain health care clinicians’ perspectives on factors that influence HRQOL, both positively and negatively, among advanced heart failure patients with MCS. Methods and Materials We conducted semi-structured qualitative interviews with 15 clinicians who provide care to MCS patients (including 3 cardiac surgeons, 3 cardiologists, 2 palliative care physicians, 3 ventricular assist device coordinators, 2 social workers, and 2 psychologists). Interviews lasted 30-60 minutes, were audio-recorded, and transcribed verbatim. Data were analyzed using a 2-phase strategy of descriptive and thematic coding. Results Clinicians described a wide range of issues that impact on HRQOL of patients with MCS. Clinicians identified positive outcomes: improved physical function, decreased symptom burden, and increased life expectancy, often described as “the gift of time.” Importantly, clinicians identified negative outcomes related to the emotional impact of MCS: loss of independence and autonomy, uncertainty about the future, and concerns about being a burden to loved ones. Disturbed role performance and anxiety about device management were identified as problems in the early post-implant phase but tended to resolve over time. Finally, clinicians indicated that a small subset of patients, typically those with device-related complications, expressed regret over their decision to receive a device. Conclusions HRQOL among patients with MCS is a multi-dimensional construct that includes symptom burden, physical function and role performance, and emotional and relational impact. Clinicians indicated that MCS can have both a positive and negative impact on HRQOL. These findings indicate the necessity of developing a measure of HRQOL for patients with MCS. This will be done by triangulating clinician interviews with patient and caregiver interviews.