Seriously ill and dying patients often suffer from treatable symptoms, both physical and psychological. There are several possible explanations for the persistence of significant symptom distress in this setting and population: 1) Patient-level pharmacologic or non-pharmacologic interventions may ineffective or inadequately studied in the terminally ill population; 2) Care providers (either informal or professional) may not recognize symptom distress, leading to under treatment of distressing symptoms; 3) Those who are experiencing the symptom distress (patients) and those who have the ability to address the distress (health care providers) may not have effective means of communicating. The purpose of this proposed project is to study the feasibility and determine preliminary effect sizes of implementing a patient-centered technology-based system for improving symptom management in hospice/palliative care settings.
The Specific Aims of the proposed project are to: 1) Develop, test and refine components of a patient-centered health information technology (HIT) intervention that incorporates sequential standardized symptom and quality of life assessments with real-time feedback into routine care; and 2) Conduct a feasibility study of the reach and effectiveness of the patient-centered symptom management HIT intervention with diverse organizations providing hospice/palliative care and diverse people with advanced cancer receiving care from these organizations. This feasibility study will test a bi-directional system where patients, informal caregivers and hospice/palliative care providers can enter data and receive reports that summarize symptom distress information and prompt care interventions. The study will be conducted in a community-based hospice/palliative care research network. If shown feasible as a two-way symptom management and alerting system, the patient-centered system may be adapted to assist with symptom management in other settings and other cancer stages. Findings from this project will inform preparation of an R01 proposal for a larger-scale randomized clinical trial to test the efficacy of the symptom management HIT intervention for decreasing symptom distress among persons with advanced cancer. ? ?
| Kilbourn, Kristin M; Costenaro, Allison; Madore, Shannon et al. (2011) Feasibility of a telephone-based counseling program for informal caregivers of hospice patients. J Palliat Med 14:1200-5 |
