In the United States, heart failure affects a patient population of over 6.5 million. Through medication management, transportation, and emotional support, among the many tasks they assist with, these patients’ caregivers provide services valued at $7.9 billion annually.
In the United States, heart failure affects a patient population of over 6.5 million. Through medication management, transportation, and emotional support, among the many tasks they assist with, these patients’ caregivers provide services valued at $7.9 billion annually. This begs an important question, though: Are the caregivers receiving help of their own?
“Mounting research suggests that heart failure family caregivers play a critical role in promoting patient outcomes such as medication and treatment adherence, health, survival, self-management behaviors, and quality of care,” the study authors said. “Performing these tasks, often with no training and while also coping with seeing a close relative deal with a life-threatening illness, has been associated with high rates of caregiver physical and psychological distress and low quality of life.”
Their study results, published in JAMA Network Open, from the Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers single-blind, randomized clinical trial show that regular telehealth phone sessions may not produce noticeable improvements among caregivers of patients with New York Heart Association class III/IV and/or American Heart Association/American College of Cardiology stage C/D heart failure.
With primary outcomes that included improvement in quality of life, mood, and burden, 158 caregivers were recruited from 2 outpatient clinics between August 2016 and October 2018 and randomized to 2 cohorts: intervention (n = 82) and usual care (n = 76). Most were female (85.4%), a spouse or partner of the patient (65.2%), and African American (51.9%) or white (39.0%); their mean (SD) age was 57.9 (11.6) years. Most (40.2%) in the intervention group were retired, whereas a plurality (39.5%) of the usual care group worked full time.
Everyone completed baseline questionnaires before the intervention group received 4 weekly telephone counseling sessions from a nurse trained in palliative care telehealth and monthly follow-up for 48 weeks. Only 60.1% of the telehealth group participated in all 4 sessions.
Improvements were minimal, or none.
Quality of life was evaluated with the Bakas Caregiver Outcomes Scale. At week 16, the mean (SD) score was 66.9 (2.1) in the telehealth group and 63.9 (1.7) in the usual care group. By week 32, those scores had only improved by a mean (SE) 0.7 (1.7) and 1.1 (1.6) points, respectively.
The Hospital Anxiety and Depression Scale measured change in mood. At week 16, no improvement was seen. In the intervention and usual care group, the mean (SE) changes in anxiety were 0.3 (0.3) and 0.4 (0.3), respectively, and for depression, —0.2 (0.4) and –0.3 (0.3).
The Montgomery-Borgatta Caregiver Burden scales assessed burden, but no change was seen (d range, −0.18 to 0.0).
Major reasons proposed for the minimal improvement in scores was that the population surveyed was doing just fine and they had a good quality of life, but also that the intervention was either not significant enough to make a difference or too much to handle. In addition, 40% did not receive all the assistance that was offered.
“Insights from our results suggest that future interventions should be briefer, target more distressed caregivers than those in our sample, and assess effects on patient outcomes,” the team concluded. “Development of reliably efficacious interventions for diverse heart failure family caregivers remains elusive but is of such importance that continued efforts and testing are needed to optimize culturally appropriate support to this hidden workforce.”
To accomplish that end, the authors suggested more intensive preliminary screening for caregivers who may be suffering from extreme stress and need additional support, enhanced understanding of how supportive services may or may not lead to improvements for program participants, and support schedules that allow for greater flexibility with caregivers’ schedules.
Dionne-Odom JN, Ejem DB, Wells R, et al. Effects of a telehealth early palliative care intervention for family caregivers of persons with advanced heart failure: the ENABLE CHF-PC randomized clinical trial. JAMA Network Open. 2020;3(4):e202583. doi: 10.1001/jamanetworkopen.2020.2583.