Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure

Abstract

IMPORTANCE Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life. OBJECTIVE To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks. DESIGN, SETTING, AND PARTICIPANTS This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-today medical care. Participants were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs medical center from August 2016 to October 2018. INTERVENTION Four weekly psychosocial and problem-solving support telephonic sessions lasting between 20 and 60 minutes facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The usual care group received no additional intervention. MAIN OUTCOMES AND MEASURES The primary outcomes were quality of life (measured using the Bakas Caregiver Outcomes Scale), mood (anxiety and/or depressive symptoms measured using the Hospital Anxiety and Depression Scale), and burden (measured using the Montgomery-Borgatta Caregiver Burden scales) over 16 weeks. Secondary outcomes were global health (measured using the PROMIS Global Health instrument) and positive aspects of caregiving. RESULTS A total of 158 family caregivers were randomized, 82 to the intervention and 76 to usual care. The mean (SD) age was 57.9 (11.6) years, 135 (85.4%) were female, 82 (51.9%) were African American, and 103 (65.2%) were the patient's spouse or partner. At week 16, the mean (SE) Bakas Caregiver Outcomes Scale score was 66.9 (2.1) in the intervention group and 63.9 (1.7) in the usual care group; over 16 weeks, the mean (SE) Bakas Caregiver Outcomes Scale score improved 0.7 (1.7) points in the intervention group and 1.1 (1.6) points in the usual care group (difference, −0.4; 95% CI, −5.1 to 4.3; Cohen d = −0.03). At week 16, no relevant between-group differences were observed between the intervention and usual care groups for the Hospital Anxiety and Depression Scale anxiety measure (mean [SE] improvement from baseline, 0.

Palliative Care for Patients on Extracorporeal Membrane Oxygenation for COVID-19 Infection

“…Previous studies have demonstrated the beneficial effects of palliative care in patients with conditions such as advanced cancer 28 - 31 and advanced heart failure. 32 , 33 A recent randomized controlled trial of early palliative care involvement in critically ill ICU patients resulted in increased use of hospice services, and a decrease in burdensome interventions at the end-of-life such as tracheostomies, without an increase in mortality compared to patients receiving usual care. 34 The patients and families in our cohort received frequent psychosocial support and counseling from the interdisciplinary palliative care team.…”

Can you hear me now?: Improving palliative care access through telehealth

“…(Powell et al, 2017). ENABLE has demonstrated success in multiple oncology clinical trials (Bakitas et al, 2009;Bakitas, Tosteson, et al, 2015) and was most recently tested in patients with advanced HF, where it showed a potential benefit to patients experiencing poor QOL and their family caregivers Dionne-Odom et al, 2020). ENABLE is initiated at diagnosis of advanced disease and consists of two primary components: (1) an in-person outpatient comprehensive PC assessment by a board-certified provider and (2) a series of six weekly, 30-60 min telephone nurse-led coaching sessions using the Charting Your Course© guidebook (see Figure 1).…”

“…family, and the healthcare team, a common misperception is that PC cannot provide the same degree of human compassion using remote technology (Andone & Artemis, 2019). Despite this concern, a number of telephone-based PC studies have been conducted, yielding positive results for both patients and caregivers (Bakitas et al, 2004(Bakitas et al, , 2009Bakitas, Tosteson, et al, 2015;Dionne-Odom et al, 2020). Although there is ample evidence that telehealth enhances patient access to PC services, some still considered providing PC via telehealth as "nontraditional" (Guzman et al, 2020).…”

Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature

“… 253 Dionne-Odom and colleagues (2020) suggest early telehealth-base interventions targeting distressed caregivers and assessing caregiver effects on patient outcomes. 256 They proposed an early longitudinal 6-week phone intervention that includes all aspects of palliative care and self-care. 256 While implementation of telehealth-based interventions for underserved and rural non-Hispanic Black communities are strongly encouraged, the acceptability, feasibility, and effectiveness of these programs need to be carefully tested.…”