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The survey of 367 women with advanced breast cancer, which was conductedby Y-ME National Breast Cancer Organization, also underscores the growingimportance of the Internet as an information resource for patients. Thesurvey uncovered that patients with MBC feel that the Internet can be utilizedmore effectively by healthcare professionals and patient advocates.
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"Despite the growing recognition of unmet medical, educational, andpsychosocial needs among women with advanced breast cancer, there has beenlittle information regarding which of these needs are most important to thispatient population," said Margaret C. Kirk, CEO, Y-ME National Breast CancerOrganization. "This survey identifies psychosocial support as a high priorityfor women with metastatic breast cancer, one that should be pursued in tandemwith the search for more effective and better-tolerated treatments."
Additionally, survey participants' responses about treatment-related sideeffects, fears and anxieties, and the overall treatment experience suggestthat healthcare professionals would benefit from more education.
Survey Highlights Negative Experiences with Disease and Treatment
The survey identified a host of challenges among women with MBC. A vastmajority (94%) of respondents indicated that they had experienced weakness orfatigue while dealing with their disease; and nearly three-quarters (73%) saidthey had suffered from depression. Two-thirds (67%) noted they hadexperienced cognitive disorders associated with treatment (e.g., the so-called"chemo-brain" syndrome); and more than half (51%) complained of sexualdysfunction. When asked what has concerned them most about their treatment,nearly one-third of survey participants mentioned side effects (29%), fearthat the treatment would not work (29%) and fear of the unknown (27%).Respondents noted that fatigue (30%) was the most impactful of side effectsassociated with standard treatment, followed by pain (21%) and hair loss(14%).
When the survey participants were asked who has given them the mostsupport in dealing with MBC, family member (43%) was mentioned most often,followed by caregiver (16%), friend (14%), and medical oncologist (13%).Nearly as many respondents said they get most of their information about MBCfrom the Internet (39%) as from their doctors (42%), and 86 percent said Web-based MBC education and support materials would be most helpful to them.
The survey uncovered gaps in the treatment of MBC. Twenty-two percentexpressed unhappiness with the care they have received for their disease; 73%were not offered entry into a clinical trial at diagnosis; 36% disagreed withthe statement that women with MBC have a variety of treatment optionsavailable to them; 41% indicated that options were not clear to them at thetime of diagnosis; and 52% said their healthcare provider does not offer avariety of treatment options or keep them informed of relevant drug approvalsand clinical trials.
The survey also uncovered a strong desire for more patient advocacy groupsto focus on MBC, as voiced by 82% of respondents. Nearly half of those polled(47%) expressed a wish for more monetary support in the area of MBC researchto extend survival.
"Although the breast cancer advocacy communities have made great stridesin developing and disseminating information about metastatic breast cancer, itis clear that we need to do a better job in these areas," said Kirk. "Thesurvey results should serve as a wake-up call to healthcare professionals andadvocacy groups to step up and improve their communication and support topatien
