Cancer Clinical Trial
Official title:
Enhancing End-of-Life and Bereavement Outcomes Among Cancer Caregivers: Symptom Care by Phone for Hospice Caregiver Support and Cancer Symptom Relief
Improving end-of-life care and the suffering caused by poorly controlled symptoms is an important public health concern. The development of an automated telephone symptom monitoring and support system that assists caregivers in providing end-of-life care and communicating information to the patient's hospice nurse has the potential to enhance the management of common end of life symptoms, thus reducing the suffering of patients at end of life as well as the suffering of their family caregivers. This study has developed such a system and is testing the effectiveness of this system.
Individuals dying from cancer often live out their lives at home with a host of poorly
controlled symptoms. Ineffective symptom management results, in part, from inadequate
monitoring of patients once they leave the treatment-focused arena of the clinical setting.
The changing pattern of symptoms is challenging as care strategies and recommendations from
previous encounters with healthcare providers become quickly outdated. The burden of
end-of-life care largely falls to family caregivers, usually a spouse or partner, who feel
enormous pressure to provide physical and supportive care but often lacks the knowledge and
skill resulting in significant caregiver burden and distress that may extend into
bereavement.
This prospective, clinical trial proposes to develop and test a telecommunication system,
Symptom Care by Phone- Hospice that has been designed to bridge the divide between home and
palliative care support for patients at the end of life and their family caregiver.
SCP-Hospice has three elements: 1) daily monitoring of symptoms common at end of life, 2)
automated alerting of the hospice nurse case manager about symptoms that have exceeded a
pre-set threshold for symptom severity or caregiver distress about symptoms, and 3)
automated, just in time, tailored care management strategies for the caregiver to implement
to address the patient's symptoms. Caregivers call the SCP-Hospice system daily to report
patient symptoms and then are immediately provided automated, tailored care suggestions
paired to the specific symptom profile.
The specific aims of the study are to test whether the SCP-Hospice intervention reduces
severity and distress from 12 different symptoms and whether it decreases caregiver burden,
anxiety, depressed mood and distress about the patient's symptoms and improves caregiver
sleep when compared with usual care. The mechanisms that explain how SCP-Hospice affect
these outcomes also will be explored. Other aims will compare patient care strategies
utilized by caregivers and evaluate caregiver and Hospice nurse satisfaction with the SCP
system.
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