Adam Brufksy, MD
In 2014, Novartis Oncology commissioned the Harris Poll to conduct the Make Your Dialogue Count survey to identify the emotional needs of patients newly diagnosed with metastatic breast cancer (MBC) as well as during treatment change. The goal of the project was to improve patient–provider communication about treatment and side effects and facilitate shared decision making concerning treatment plans and goals.
The survey was conducted online, via telephone, or on paper; respondents were women aged ≥21 years diagnosed with advanced breast cancer (n = 359) and licensed US medical oncologists (n = 252) who treat at least 5 patients with advanced breast cancer per month.
Findings revealed that what patients expected from discussions with their oncologists did not always align with what was actually discussed in these interactions:
- 89% of patients surveyed felt it important to discuss a long-term treatment “roadmap” with their doctor at initial diagnosis, yet 43% reported not having that conversation.
- 70% of patients and 65% of oncologists said that it’s important or very important to refer patients to support services at their initial advanced breast cancer diagnosis; however, only 36% of patients reported that this was something their doctor did.
- 23% of oncologists responded that at times, their emotions have kept them from sharing certain information with their patients with MBC.
Adam Brufksy, MD, Medical Director of the Women’s Cancer Center at the University of Pittsburgh Cancer Institute and an advisor to the survey, said that these results reveal “fairly important gaps” in the way oncology providers and patients with MBC view the experience of having this diagnosis:
“That 23% of oncologists find prognosis discussions difficult, especially with younger patients, is concerning,” he said in an interview with Oncology Nursing News
“Oncologists need to take the cue from patients about how much they want to know. They may err on the conservative side and assume patients don’t want to know much, but what this survey shows is that patients want to know more.”
The survey results, along with input from the MBC community, provided the foundation for the development of a personalized Make Your Dialogue Count discussion guide to help patients make the most of their time with their healthcare providers. Questions cover six broad areas, including breast cancer subtype, treatment status, side effects, challenges with treatment adherence, interactions with providers, and psychosocial concerns. Based on the individual patient’s responses, a customized discussion guide is generated with tips for initiating a dialogue with providers and questions to ask at the next appointment.
The discussion tool also can be revisited regularly as patients’ needs, concerns, and priorities often change over time, another important takeaway of this survey.
“The great value of these findings lies in how they can help inform oncologists about what’s important to women as we talk to them about their disease and planning treatment,” said Brufsky.
Patient can access the Make Your Dialogue Count tool at makeyourdialoguecount.com.
Brufsky AM, Ormerod C, Bell Dickson R, Citron ML. Understanding the needs of patients with metastatic breast cancer: results of the Make Your Dialogue Count Survey [published online ahead of print September 13, 2016]. Breast J