The majority of patients diagnosed with advanced breast cancer feel that their health care providers include them in most treatment decisions, according to the results of a global survey reported at the 9th European Breast Cancer Conference.

However, the data also show that more work needs to be done, especially in regions where the physical, social and psychological effects of such a diagnosis have not been widely studied.

Study advisors from CancerCare in New York, NY, and Harris Interactive in Rochester, NY, analyzed responses to the online survey that aimed to improve the support needs for women with advanced breast cancer.

Advanced breast cancer affects nearly 250,000 women worldwide and includes locally advanced and metastatic disease, advisor Kyle Hornyak, of CancerCare, says.

The disease has important health implications, requires lifelong treatment, and is a cause of substantial morbidity and mortality, yet support needs for these women are rarely met.

Overall, 1,273 female metastatic breast cancer patients who were 21 years of age or older completed the survey. Study participants were from the US, Canada, Mexico, Argentina, Brazil, the UK, Germany, Russia, Lebanon, India, Taiwan and Hong Kong.

Results showed that 57% of patients said health care providers (HCP) involve them in treatment discussions and include patients’ and/or caregivers’ concerns when deciding on a treatment plan. Meanwhile, 36% did not participate in these discussions and 7% reported neither.

Of the cohort of women who reported not being included in these conversations, 49% attributed their non-participation to trust in their HCP to make optimal decisions about their care, 21% were not aware of treatment options available, and 11% did not feel comfortable questioning their HCP.

The remaining 19% cited a variety of other reasons for why their HCP did not involve them in treatment discussions.

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Open dialogue between health care professionals and patients is key to making informed treatment decisions, researchers say.

The survey also queried women about the content of patient-HCP treatment discussions. The researchers found 70% of women had discussed potential treatment-related side effects, 62% had discussed pain and discomfort, 60% had discussed treatment goals, 58% had discussed side effects management and 53% had discussed other available treatment options.

Treatment satisfaction (39%), cost (37%), access (36%), and participation in clinical trials (22%) were discussed less often.

Nearly two thirds of women said that they felt their treatment options were limited.

Given that the impact of a diagnosis of advanced breast cancer has been examined largely in western white populations in early cancer, researchers also decided to explore more closely the effects of a diagnosis of advanced breast cancer in their study participants from countries that have had little “mapping” of the breast cancer experience.

These countries include Russia, Turkey, India, Taiwan, Hong Kong and Lebanon.

The main findings were as follows:

  • Most patients with advanced breast cancer in these countries are concerned or very concerned about their own personal health
  • Most women who are living with advanced breast cancer feel that no one understands what they are going through, and they feel isolated from the early breast cancer community
  • Even those women who actively seek information and inclusion in the breast cancer community cannot find information that addresses their needs
  • Many patients find that support from friends and family is reduced over time
  • Women with advanced breast cancer often feel valued for the support they provide (or used to provide) but worry that their disease may prevent them from offering ongoing support.

Researchers urge HCPs to foster an open dialogue with patients in order to be able to provide them with information necessary to make informed treatment decisions. The dialogue should include a discussion of available treatment options and ongoing clinical trials, side effects and emotional support.

The “Count us” global survey was commissioned by Novartis Oncology in partnership with the global advocacy community.

Jill Stein is a Paris-based freelance medical writer.