Hospice symptom management system benefited patients, caregivers

Issue: November 25, 2014

A telephone-based symptom monitoring and coaching system improved patient symptoms and their caregiver’s well-being during hospice care, according to study results presented at the Palliative Care in Oncology Symposium.

Perspective from Jyoti D. Patel, MD

“Within hospice care, there is this important triad that is made up of the hospice nurse, the dying patient and the family caregiver,” researcher Bob Wong, PhD, director of applied statistics and research associate professor at the University of Utah College of Nursing, said during a press conference. “This study differs from many studies in the past that have focused on either the patient or just the caregiver themselves.”

The analysis included 319 families who were receiving hospice care. Wong and colleagues assigned 153 families to the automated telephone symptom monitoring system. The other 166 patients received usual care.

Caregivers from all the families called into the monitoring system daily to report the patient’s symptoms — including pain, difficulty breathing, change in thinking, constipation or diarrhea, bladder difficulties, nausea/vomiting, fatigue/weakness, negative mood, anxiety, trouble sleeping and poor appetite — from the previous 24 hours. The caregivers also were asked about their own fatigue, anxiety, sleep and mood.

Families who were assigned the intervention then received automated coaching suggestions to address the symptoms of the patient and caregiver, and reports on unrelieved symptoms were sent to the hospice nurse.

“A piece of additional contact in the intervention group was the normalization of the process, as well as coaching tips provided to the symptom care group,” Wong said. “So at the start of the study, the system through recordings would normalize the burden of the process of hospice care. Throughout the study, depending on the level of the symptoms being reported and the type of symptoms, the system would tailor tips to help care for the patient as well as the caregiver. For example, if a patient symptom was difficulty breathing, the coaching tip could be about how to reposition the patient to help with that particular symptom.”

The most common patient symptoms were fatigue (70%), pain (64%), poor appetite (54%) anxiety (39%) and change in thinking (38%).

Caregiver vitality — measured by a composite of fatigue, trouble sleeping and impact on daily activities — remained relatively steady in the intervention arm, but decreased throughout the study in the usual care group (P=.003).

Patient symptom severity also improved in the intervention arm in the first four weeks of hospice care and overall (P=.003). The benefit of the intervention on patient symptoms persisted until the last few days of life.

“Automated collection of patient-reported symptoms is increasingly used in oncology, but it has not yet extended to home hospice settings,” researcher Kathi Mooney, PhD, RN, distinguished professor of nursing at the University of Utah College of Nursing and co-leader of the Cancer Control and Population Science Program at the Huntsman Cancer Institute, said in a press release. “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.”

For more information:

Mooney K. Abstract #85. Scheduled for presentation at: Palliative Care in Oncology Symposium; Oct. 24-25, 2014; Boston.

Disclosure: The study was funded by the NCI. The researchers report no relevant financial disclosures.

Perspective

Jyoti D. Patel, MD

Caregiving is truly a 24-hours-a-day, 7-days-a-week job. Most caregivers cannot do it alone. This tele-monitoring system can certainly help lessen the burden and proactively address symptoms and concerns as they escalate during often-difficult weeks in both patients’ and caregivers’ lives.

Jyoti D. Patel, MD

Thoracic oncologist

Northwestern University Feinberg School of Medicine

Disclosures: Patel reports research funding from Astex Therapeutics, Genentech, Lilly and Novartis.