BOSTON – An automated system for monitoring the symptoms of patients in home hospice and supporting their caregivers with coaching can both improve patient comfort and relieve at least some of the stress on the caregiver, said investigators in a pilot program.
In a prospective, randomized controlled trial, caregivers assigned to symptom care by phone, in which they received automated coaching tailored to the specific situation, had better overall vitality, and the patients they cared for had less fatigue and anxiety than caregiver-patient pairs assigned to usual care, reported Dr. Kathi Mooney, professor of nursing at the University of Utah College of Nursing, Salt Lake City.
“The family inclusion in hospice care, the philosophy around that, offers the opportunity to extend PROs [patient-reported outcomes] to FCROs, family caregiver reported outcomes. We call that an opportunity to use electronic monitoring to monitor a family,” she said at the Palliative Care in Oncology Symposium.
Dr. Mooney and her colleagues have previously reported on the use of automated symptom monitoring for support of patients undergoing ambulatory chemotherapy. In the current study, she described its application in home-based end-of-life care to support both the patient and the caregiver.
The investigators recruited 319 cancer patient/caregiver dyads from 12 hospices in Illinois, Massachusetts, Oregon, and Utah. The mean age of the patients was 72 years, and the mean age of caregivers was 59 years.
The caregivers were randomly assigned either to the symptom care by phone (SCP) system or to usual care. The SCP system is an automated system in which caregivers phone in to report the patient’s symptoms and their own levels of stress, anxiety, etc., and receive automated responses based on the severity of symptoms and number of days reported without relief. The system offers both patient care and self-care strategies, and identifies and reinforces issues that should be addressed by contacting the hospice team. At the end of the call, the data are sent to the nurse, including alerts to matters that require prompt attention.
Caregivers in each group made daily automated monitoring calls to report 1 or more of 11 patient symptoms and 5 caregiver symptoms on a 0-10 scale, and to report the patient’s and their own distress about the symptoms.
“We have developed algorithms to provide just-in-time, tailored suggestions related to the pattern that they have reported,” Dr. Mooney said.
Data reported by caregivers in the control (usual care) group were recorded but not acted upon, whereas data reported by those in the SCP intervention group triggered the automated coaching and hospice nurse alerts for moderate to severe symptoms.
“People in the usual care group understood that they were just contributing symptom information, and they were told on every call and at consent that if they had any concerns to call their hospice nurse,” Dr. Mooney said.
For clinicians, the automated system triggers an alert at preset thresholds of severity (4-10), as well as trend alerts. Hospice nurses have online and mobile access to the alert website, where they can view a report of symptoms over the previous 24 hours, and review graphs of symptoms over time to see trends. The nurses were instructed to log that they had seen the alert and what their planned action was, which was left to their professional judgment.
The average length of the calls was 7 minutes, 4 seconds for the usual care group, and 7 minutes, 59 seconds for the intervention group. Control group caregivers completed 59% of expected calls, and those in the intervention group completed 64%.
Reported symptoms present in more than 50% of patients included fatigue (88.8%), pain (60.2%), eating/drinking problems (76.6%), difficulty thinking (69.6%), anxiety (67.6%), negative mood (67.3%), bowel problems (61%), and trouble sleeping (58.3%).
Among caregivers, 73.3% reported fatigue, 66.7% anxiety, 61% trouble sleeping, and 57.1% negative mood.
In a mixed-effects model looking at caregiver vitality – a composite of caregiver symptoms – the authors found that the severity of symptoms in the usual care group increased steadily over the course of hospice care, out to at least 91 days. In contrast, the severity of symptoms among caregivers in the SCP group rose only slightly. The between-group difference was significant (P < .001).
Similarly, among patients the overall symptom severity scores were lower for those in the intervention group than for controls (P =.03). Additionally, the onset of benefit, defined as time to the first symptom-free day, was significantly earlier among patients in the SCP group (P < .02)
Patterns of patient and fatigue during the last 8 weeks of life also favored the symptom-care intervention, Dr. Mooney noted.`