The results of the ASCO Breast Cancer Registry Pilot Program, funded by Susan G. Komen for the Cure, were recently published as two studies in the journal Cancer.  One study found that an overwhelming majority of surveyed participants were satisfied with the program and found it useful to their practice, while another found that patients were highly pleased as well.

ASCO launched the program in 2009 with the three goals of:

1. Creating a breast cancer registry database to inform and guide future quality of care and research initiatives.
2. Utilizing treatment plan and summary reports generated by the registry to evaluate practices' perceived burden, value, usefulness, and effectiveness of patient discussions regarding treatment and survivorship.
3. Evaluating patients' perspectives on treatment and survivorship discussions, which use the treatment plan and summary reports generated by the registry.

Twenty diverse oncology practices participated in the pilot program, entering 2014 patients into the web-based registry (similar to the interface used for inputting data for ASCO’s Quality Oncology Practice Initiative), which collected demographic, clinical, and treatment information. The registry then automatically generated treatment plans and summaries developed by ASCO for patients with newly diagnosed breast cancer. The practices then participated in an end-of-pilot survey on their experience participating in the program. The participating patients also had the opportunity participate in surveys about their experience as well.

The Breast Cancer Registry Pilot concluded in July of 2011. Ann Partridge, MD is lead author of the article on the surveyed practices, which expands upon preliminary results presented at the 2011 ASCO Annual Meeting.  She and her colleagues report that:

Fifty-two percent of the oncology professionals who participated in the pilot program replied to an end-of-pilot survey, with 73 percent being satisfied with the registry and web-based tool. Among those who created or shared the treatment plans and summaries, 90 percent thought the tools improved communication between patients and oncologists, and 95 percent favored using registry data for improving quality of care.

Victoria Blinder, MD is lead author of the article reporting on the patient perspective. The study reported that 94 percent of patients who recalled receiving treatment plans and summaries believed they improved patient-physician communication, and 72 percent said they increased their peace of mind.

“The results of the study demonstrate that implementing and evaluating treatment plans and summaries in multiple practices through a registry is feasible and generally well-received,” said Dr. Partridge. “We are now exploring how we can further integrate informatics to make it less burdensome and more streamlined with usual clinical care for practices to participate in registries.”

Dr. Partridge and members of the Breast Cancer Registry Steering Group are currently working on two papers regarding analyses of the clinical data from the registry.