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Caregivers: Join the Cancer Experience Registry at CancerExperienceRegistry.org

As important as it is to think about access to providers (i.e., getting seen by a provider), it is also important to think about the quality of patient-provider communication.

Many people with cancer who are facing a significant treatment decision are overwhelmed and do not know what questions to ask their doctor or how to make the best use of the limited time with the physician. Research suggests that assisting these patients in advance of these appointments enables them to ask important questions, benefit from the information provided and engage actively with the physician in treatment decisions. Patients who report good communication with their providers have better quality of life, lower distress and are more satisfied with their treatment. Understanding the quality of the communication with providers from the perspective of the patient is even more vital with the evolution of personalized medicine.

The Cancer Support Community, through the Research and Training Institute (RTI), explores the nature and quality of patient-doctor interactions at every stage of the cancer experience with special emphasis on the shared decision making process. We use the Cancer Experience Registry® to understand the roles in communication that patients and caregivers undertake, and their perceptions on the quality of discussion with providers.

Open to Options®

The RTI also developed a treatment decision support program, Open to Options®, to help patients enhance communication and allow people to become more active, empowered participants in their care. In CSC’s novel decision support counseling program, a trained Open to Options specialist meets with the patient either in person or by telephone to help the patient brainstorm a personalized question list related to the person’s situation, understanding of the disease and treatment options, and the patient’s goals for treatment. The patient receives a typed list of their questions and concerns that can be shared with the doctor in advance or at the appointment.

In a pilot study funded by the Centers for Disease Control, we explored the benefits of Open to Options® for patients with hematological cancers. The data suggest that decision support helps patients reduce distress, anxiety and decisional regret by asking treatment-related questions of their doctor based upon their preferences and priorities. Physicians responded quite positively to this program citing that it focused their limited time with the patient and improved the dialogue about treatment options.

Importantly, 42% of patients discussed the option of participating in a clinical trial with their doctor, and 19% of patients actually joined a clinical trial. This is compared to the national average, in which only an estimated 3% to 5% of adult cancer patients enroll in a clinical trial. 

These exciting findings suggest that Open to Options can lead to greater patient-centered care and shared decision making. Today, the program is provided to persons with cancer through CSC affiliates and through the CSC helpline. Given the importance of patients being well-informed and having good communication with their health care team, we continue to prioritize communication-related research for those affected by cancer.