People with cancer and chronic cancer-related illness experience a wide range of physical and psychological symptoms that can negatively impact their quality of life and significantly burden families and caregivers.

 

At Duke, we are developing a comprehensive clinical information system that focuses on the patient’s concerns and personal experience in the healthcare system. Measures include patients’ personal reports of quality of life, symptoms, satisfaction with care, and other concerns. Real-time assessment and reporting gives providers the opportunity to respond at the time a patient reports concerns.

 

Quality cancer care is synonymous with responsive cancer care that focuses on the individual. This novel Duke initiative is just one example of how we are putting the patient first.

 

The Quality Cancer Care Initiative focuses on patients undergoing stem cell transplant and pre-transplant therapies at Duke. The goal is to better understand the patient’s experience with, and quality of life throughout, the continuum of care for people with hematologic malignancies. Such understanding will lead to new interventions that may improve the patient’s experience.

Palliative care is about hope and relief from suffering, regardless of your place in the continuum of a cancer illness. Accordingly, palliative care is an excellent model for attending to the distressing symptoms of cancer and is critical for quality cancer care. End-of-life care includes, but is not restricted to, palliative care. Over 80% of patients referred to hospice and palliative care services have cancer.

 

For more on palliative care, please review the National Consensus Project for Quality Palliative Care web site.

 

To foster evidence-based practice in palliative care, strategies must be developed to overcome the barriers for palliative care research including opposition to randomization, recruitment difficulties, attrition, patient burden, lack of outcome measures, poor data management, and fragmented administrative data. Implementation of successful strategies, demonstrated to improve care, is critical in overcoming these barriers.

 

The Duke Palliative Care Clinical Research Initiative conducts high quality clinical trials that generate evidence-based solutions for common problems in palliative care such as cancer pain, dyspnea, and health service delivery models. Please review a summary of current on-going projects.

Amy Abernethy, MD