Breastcancer.org Survey Reveals Severe Side Effects and Gaps in Long-Term Care Discussions for Breast Cancer Patients

PR Newswire · 10/15 18:44

PHILADELPHIA, Oct. 15, 2024 /PRNewswire/ -- Breastcancer.org has released the results of its 2024 insights survey, uncovering important data on the side effects and challenges breast cancer patients face during treatment. The survey, conducted with over 1,400 global participants, offers critical perspectives into the physical, emotional, and medical struggles experienced by those undergoing chemotherapy, hormone therapy, and surgery. Released during Breast Cancer Awareness Month, this landmark survey underscores the need for healthcare providers to offer more comprehensive discussions on long-term effects, timely referrals, and increased access to supportive resources.

A survey of 1400+ people with breast cancer reveals treatment gaps: 19% report long-term side effects weren’t explained.

Key findings from the Breastcancer.org survey include:

  • Widespread Side Effects: Physical and cognitive side effects from treatment were reported by 99.9%, a majority of respondents, with chemotherapy patients experiencing particularly severe physical symptoms, including physical changes, gastrointestinal, and musculoskeletal side effects. Cognitive effects, such as memory and focus issues, were commonly cited by those on both chemotherapy and hormone therapy.
  • Lack of Long-Term Side Effect Discussions: While 96.8% of patients reported short-term side effects that were explained to them to some extent, long-term side effects were often not discussed (18.7%).
  • Support Gaps: Although 70.6% felt supported and comfortable communicating side effects with their healthcare provider, 12.7% of respondents felt uncomfortable or embarrassed, 12.2% expressed concerns about not receiving enough time to discuss their symptoms, 12.8% said their HCP didn't believe their side effects were from medication, and 10.6% were made to feel they should be able to better handle side effects.
  • Referral and Resource Use: 1 in 3 patients did not receive referrals to specialists such as physical therapists or mental health counselors.
  • Online Communities as Key Resources: Almost all patients (95.9%) turned to the internet for information, with 42.9% saying online communities like Breastcancer.org were "extremely helpful" in managing their treatment journey.

"While medical advancements have improved survival rates, this survey highlights ongoing gaps in patient care and communication about side effects people are likely to experience," said Dr. Marisa C. Weiss, Chief Medical Officer and Founder of Breastcancer.org. She added, "We need to ensure that patients are not only surviving but thriving by addressing these challenges as a whole." Maurice J. Berkowitz, M.D., a breast medical oncologist with UCLA Health, contributed to the research.

Additional information to help support those experiencing chemotherapy side effects has recently been published on Breastcancer.org and includes articles and exercise videos to help people manage common side effects of treatment:

Insights and reporting from this survey are part of an annual signature program of Breastcancer.org's education and support resources. A global audience of one million unique visitors per month is invited to share their voices to advance a better understanding of the patient experience and advocate for improvements in breast cancer care.

For more information on this research or to explore patient resources, read the full Side Effects Management Series.

Register to attend Breastcancer.org's webinar Managing Chemo Side Effects Before, During, and After Treatment on October 15, 2024 at 4:30 p.m. ET, featuring advice from expert panelists and patients.

About Breastcancer.org

Breastcancer.org is a leading patient-focused resource dedicated to providing reliable, up-to-date information and support to those affected by breast cancer. Founded in 2000 by chief medical officer Marisa C. Weiss, MD, it empowers people with research, expert information, and a dynamic peer support community to help them make the best decisions for their lives. Since its inception, the nonprofit organization has reached 232 million people worldwide.

Contact:

Daisy Diaz 

ddiaz@breastcancer.org

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SOURCE Breastcancer.org