Palliative care – the area of healthcare that focuses on relieving and preventing the suffering of patients – has often been synonymous with hospice care and thus limited only to patients nearing the end of life. However, palliative medicine has been shown to be beneficial for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases. Early palliative care has been demonstrated to improve survival, life quality, economic costs, and caregiver burden.
The Carolinas Palliative Care Database Consortium is a community/academic partnership, based at Duke University, which collects quality improvement data for the purpose of understanding patients’ needs and informing practice change. To demonstrate an association between quality of life and outcomes in palliative cancer care, Dr. Arif Kamal of Duke Cancer Institute and his colleagues created a Quality Data Collection Tool (QDACT).
RENCI experts helped design QDACT as an electronic quality monitoring system for community-based palliative care, to document care quality and link metrics to outcomes in palliative cancer care. Demographic data, including patient age, sex, and race, were obtained from local administrative data sets and supplemented by clinician data entry. The collaboration is focused on building a visual-based user-interface to assist with recording the patient entry and displaying information that can facilitate the decision making process.