Telehealth Palliative Care Does Not Improve Caregiver Quality of Life


The intervention is no better than usual care at improving the mood or burden of those caring for adults with advanced heart failure, according to new findings.

J. Nicholas Dionne-Odom, PhD, RN

J. Nicholas Dionne-Odom, PhD, RN

A telehealth palliative care intervention for caregivers of individuals with advanced heart failure was not significantly better than usual care at improving the quality of life, mood, and burden, according to recent study findings.

J. Nicholas Dionne-Odom, PhD, RN, and a team of investigators determined the effect of a nurse-led palliative 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 those with heart failure.

Dionne-Odom, a Postdoctoral Fellow in the School of Nursing at the University of Alabama at Birmingham (UAB), and colleagues recruited participants from the outpatient UAB heart failure clinic, the UAB hospital-based transitional care heart failure clinic, and the Birmingham Veteran’s Affairs Medical Center from October 2015-August 2018.

To be eligible, patients needed to: speak English; be >50 years old; have clinician-determined New York Heart Association class III/IV and/or American Heart Association/American College of Cardiology stage C/D heart failure; have reliable telephone access; and the ability to complete baseline questionnaires.

Caregivers were eligible if they were identified by the patients as “someone who knows you well and is involved in your medical care;” spoke English; were >18 years old; had reliable telephone access; and were able to complete baseline interviews.

For the intervention, nurse coaches were paired with family caregivers and facilitated a series of 4 weekly, 1-on-1, 20- to 60-minute phone sessions guided by a “Charting Your Course-Caregiver” guidebook.

The first session was focused on introducing and defining palliative care, learning the caregiver’s understanding of the illness and the activities they do to support the patient, discussing problem solving using the COPE framework (creativity, optimism, problem solving, expert information), and outlining problem solving steps.

In session 2, the coach and caregiver reviewed self-care tips, including healthy eating and nutrition, exercise, smoking, relaxation techniques, asking for help, and building a support team. Session 3 discussed partnering in symptom management, while the fourth session focused on the role of values and the family member in decision-making, advance care planning, and decision aids.

Following the 4 sessions, the coaches followed up monthly until 48 weeks. Each session lasted a mean of 44.1 minutes.

A blinded data collector administered questionnaires at baseline and every 8 weeks for 48 weeks. The primary measurements were quality of life, mood, and burden over 16 weeks.

Overall, 158 caregivers were randomized and 82 were assigned to the intervention group. The mean age was 57.9 years old. A majority (85.4%) of the caregivers were female, 51.9% were African American, and 65.2% were the patient’s spouse or partner.

The mean Bakas Caregiver Outcomes Scale score was 66.9 in the intervention group and 63.9 in the usual care group at week 16, with higher scores indicating higher quality of life. Over 16 weeks, the mean score improved .7 points in the intervention group and 1.1 points in the usual care group (difference, -.4; 95% CI, -5.1 to 4.3).

There were no relevant between-group differences between both groups for the Hospital Anxiety and Depression Scale anxiety measure (mean improvement from baseline, 0.3 vs 0.4; difference, −0.1) or depression measure (mean improvement from baseline, -.2 vs -.3; difference, .1) at week 16.

What’s more, there were no between-group differences in the Montgomery-Borgatta Caregiver Burden scales.

The findings highlighted that the telehealth intervention did not lead to clinically better quality of life, mood, or burden compared to usual care over 16 weeks.

In the future, interventions should target distressed caregivers and assess effects on patient outcomes, the study investigators concluded.

The study, “Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure,” was published online in JAMA Network Open.

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