Interactive Symptom Monitoring Helps Patients, Caregivers During Hospice Treatment

A telephone-based symptom monitoring and coaching system not only alleviated hospice patients’ symptoms during their final weeks of life, it also improved the well-being of family caregivers, according to a new study.

The study, presented at the 2014 Palliative Care in Oncology Symposium, is the first to monitor family caregiver well-being or coach families on how to improve care to a family member.

“Within hospice care, there is this important triad that is made up of the hospice nurse, the dying patient, and the family caregiver,” Bob Wong, PhD, director of applied statistics and research associate professor, College Of Nursing, University of Utah said at a presscast held in advanced of the symposium. “This [study] differs from many studies in the past, which have focused on either the patient or just the caregiver themself.”

In previous studies, automated symptom monitoring systems have been only used to measure feasibility or satisfaction of care. In this study, the automated, telephone-based symptom monitoring system used computer-based technology to have ‘conversations’ with family caregivers about the patient’s symptoms in the past 24 hours as well as the caregivers’ own well-being.

The study compared the symptom care intervention with usual care (symptom reporting alone) of 319 families enrolled in one of 12 hospices in Illinois, Massachusetts, Oregon, or Utah. About half of the families (n=153) were assigned to receive symptom care intervention while the remaining families received usual care.

The caregivers using the symptom care intervention called in everyday and reported on 11 different patient symptoms, such as pain, difficulty breathing, or change in thinking, as well as 5 of their own symptoms, such as fatigue, anxiety, and trouble sleeping. The caregiver was asked to rate these symptoms on a 0-10 scale, with 0 being no presence of the symptom.

While both the control group and the intervention group called in and reported the symptoms, the intervention group received additional support.

If a caregiver from the intervention group reported an unrelieved symptom (any symptom reported as a 4 or higher), it was reported to the family’s hospice nurse.

“Nurses were provided iPads with mobile Wi-Fi to check symptoms if they were in the field or they could view the unrelieved symptoms from their office computer,” said Wong, who is also an author on the study. “The webpage provided graphs so that the nurses could track the trends over time.”

The intervention group also received automated coaching to improve the caregivers’ family member’s comfort as well as tips to address their own well-being.

During the call, the caregiver was provided automated customized, real-time coaching based on the nature and severity of symptoms the caregiver reported. This included suggestions such as how to position their family member for greater comfort, or improve breathing, or improve time together such as looking at old photo albums. For caregivers, suggestions included how to organize other people to assist, how to schedule time for self, how to improve sleep, or how to decrease anxiety and deal with sadness.

Coaching would also normalize the end-of-life symptom experience and help to explain what was happening and what they should discuss with their hospice nurse.

The study found that family caregivers greatly benefited from monitoring and coaching and experienced 44% fewer days of moderate or severe symptoms compared with the usual family caregiver group.

The study also showed that patients in the intervention group reported less severe fatigue and anxiety than the control group.

“Although this system is the initial prototype version, it clearly shows that using smart technology for symptom monitoring and coaching adds another layer of support during hospice care and provides additional comfort for patients at the end of life, while also helping improve the well-being of family caregivers,” Kathi Mooney, PhD, RN, lead author on the study, and Distinguished Professor of Nursing at University of Utah College of Nursing and Co-leader of the Cancer Control and Population Science Program at the Huntsman Cancer Institute in Salt Lake City, Utah, said in a statement.

Mooney K, Berry P, Wong B, et al. Helping cancer-family caregivers with end-of-life home symptom management: Initial evaluation of an automated symptom monitoring and coaching system. Presented at: 2014 Palliative Care in Oncology Symposium; October 24-25, 2014; Boston, MA. Abstract 85.

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