Knowledge And Attitudes Of Implantable Cardioverter Defibrillators In A Diverse Patient Population Nearing End Of Life

Abstract

Background While prior assessments of ICD knowledge have consistently demonstrated poor patient understanding, these analyses lack diversity. This is a critical shortcoming, particularly for patients at end of life, as differences in goals of care at end of life exist between different races and ethnicities. Objective To evaluate patient ICD knowledge and perceptions in a diverse patient population with defibrillators nearing end of life. Design Cross sectional analysis and telephone survey of patients with ICDs at a single center, within a large safety net county healthcare system. Patients within an existing palliative care registry were selected for inclusion, based on presence of an ICD as seen in Figure 1. Results A total of 113 patients met criteria for retrospective chart review. Patient demographics were 48% black, 26% Hispanic. Regarding funding status, 35% were uninsured, participated in the financial assistance program or had Medicaid (Table 1). Eight months following chart review, 44 patients had died (39%). Of the surviving patients, 26 (38%) completed the survey. Patients scored numerically worse on ICD knowledge questions compared to a prior study population. Lower knowledge scores were not associated with race or ethnicity. The majority of survey participants (69%) were unaware that ICD deactivation does not require surgery and nearly all (88%) said no that doctor had ever discussed the option of ICD deactivation. Conclusion Vulnerable and diverse patients nearing end of life may have worse understanding of ICDs than previously described patients. Decreased knowledge did not correlate with race or ethnicity. Challenges in healthcare delivery in this patient population may result in our most vulnerable patients being poorly equipped to align their ICD settings with goals of care when nearing end of life. While prior assessments of ICD knowledge have consistently demonstrated poor patient understanding, these analyses lack diversity. This is a critical shortcoming, particularly for patients at end of life, as differences in goals of care at end of life exist between different races and ethnicities. To evaluate patient ICD knowledge and perceptions in a diverse patient population with defibrillators nearing end of life. Cross sectional analysis and telephone survey of patients with ICDs at a single center, within a large safety net county healthcare system. Patients within an existing palliative care registry were selected for inclusion, based on presence of an ICD as seen in Figure 1. A total of 113 patients met criteria for retrospective chart review. Patient demographics were 48% black, 26% Hispanic. Regarding funding status, 35% were uninsured, participated in the financial assistance program or had Medicaid (Table 1). Eight months following chart review, 44 patients had died (39%). Of the surviving patients, 26 (38%) completed the survey. Patients scored numerically worse on ICD knowledge questions compared to a prior study population. Lower knowledge scores were not associated with race or ethnicity. The majority of survey participants (69%) were unaware that ICD deactivation does not require surgery and nearly all (88%) said no that doctor had ever discussed the option of ICD deactivation. Vulnerable and diverse patients nearing end of life may have worse understanding of ICDs than previously described patients. Decreased knowledge did not correlate with race or ethnicity. Challenges in healthcare delivery in this patient population may result in our most vulnerable patients being poorly equipped to align their ICD settings with goals of care when nearing end of life.