Many women who undergo breast cancer surgery say that they felt they were not completely informed and that they rushed decisions instead of researching all the options. A Web-based decision aid improved both aspects ― by using the aid, women said they felt better informed and realized they could take time to make a decision.
The findings come from two studies published online December 12 in the Journal of the American College of Surgery.
In the first study, Sunny Mitchell, MD, a breast surgeon in Stratford, Connecticut, and colleagues conducted a nationwide survey of women who had undergone breast cancer surgery. Of almost 500 patients, more than half indicated that they had not felt completely informed about their treatment options.
Respondents included women who had undergone lumpectomy only, mastectomy only, or both procedures. Overall, around a third of the women indicated that they felt that making a quick decision was more of a priority than taking time to research all the treatment options.
Dr Mitchell commented that she was “definitely surprised” by the findings. She noted that future studies should focus on determining which formats for the delivery of reliable and consistent information are most effective.
In the second study, led by Heather B. Neuman, MD, Wisconsin Surgical Outcomes Research Program, University of Wisconsin School of Medicine and Public Health, Madison, a Web-based decision aid was compared with sending women links to standard websites.
This team found that women who used the decision aid were better informed than the other women and, crucially, were more likely to recognize that taking the time to make a more informed decision would not affect their survival.
Dr Neuman said that their results underline that patients do not need to feel rushed into making decisions about their treatment.
Patients come in with this urgency, and this finding tells them they can slow down.
“Patients come in with this urgency, and this finding tells them they can slow down,” Dr Neuman said in a press statement. “They don’t need to have that anxiety.”
Dr Neuman added that it is very helpful to patients to receive information from a physician, rather than having to search for it online themselves.
“This process of sending something by email works, and for a general surgeon in a more rural area, that’s something they could do to improve care,” she said. Dr Neuman noted that her team is planning to conduct a similar similar study in an underserved community in Memphis, Tennessee.
Many Women Are Not Well Informed
The first study explored how well informed patients felt they were. Dr Mitchell and colleagues invited women from across the United States to complete an online survey. The women had been diagnosed with breast cancer and undergone lumpectomy, mastectomy, or both.
One section of the questionnaire concerned screening and demographic factors. A second section concerned the patients’ experience of lumpectomy or mastectomy. A final section consisted of questions regarding respondents’ socioeconomic and health insurance status.
To improve the generalizability of the findings and to ensure that the sample was nationally representative, enrollment quotas were established on the basis of geographic area, health insurance status, and income level using data from the US Census Bureau.
The team reports that 3004 (57.8%) of 5200 invitees responded to the initial email. Of those, 2774 (92.3%) consented to take part. Of 571 patients who met all the eligibility criteria, 487 (85.3%) completed the survey.
Of the final group, 215 underwent lumpectomy only, 140 underwent mastectomy only, and 132 underwent both procedures.
Among the patients who underwent lumpectomy only, 47% said that they felt “completely informed” about their treatment options prior to surgery. By comparison, 67% of mastectomy-only patients and 28% of those who underwent both procedures said that they felt completely informed.
The survey showed that a substantial minority of patients believed that making a quick treatment decision in order to move the process forward was more important than thoroughly researching all the treatment options.
This was the case for 35% of lumpectomy-only patients, 31% of mastectomy-only patients, and 22% of patients who underwent both procedures.
Sources of information other than the primary breast surgeon included other physicians and websites. Fifty-six percent of lumpectomy-only and mastectomy-only patients and 73% of women who underwent both procedures received information from other physicians. Websites were used by 58%, 54%, and 56% of patients, respectively.
Aside from their families and friends, a substantial minority of patients looked to online blogs, forums, and discussion boards for social support. Thirty-nine percent of lumpectomy-only patients sought information from these sources, as did 34% of those who underwent mastectomy only and 49% of those who underwent both surgeries.
Women who underwent lumpectomy or mastectomy only were significantly less likely to report feeling completely informed about their treatment options if they relied solely on their surgeon’s recommendations (odds ratio [OR], 0.6; P < .02).
Lumpectomy-only patients were significantly more likely to feel completely informed if they received a second surgical option (OR, 2.5; P = .017). This was not the case for women who underwent mastectomy only.
The team says that although patients do make an effort to inform themselves, “it is unrealistic to expect that the majority of patients have sufficient health literacy, research skills, information access, and clarity of mind to inform themselves about all treatment options sufficiently to make the best healthcare decisions for themselves.”
They believe that healthcare providers should therefore strive to create a cancer care system in which patients are aware of all treatment options and the associated risks and benefits.
Factors in such a system could include proactively planning how to inform patients, offering a variety of information and decision aids, scheduling follow-up consultations, and “reassuring patients that they have sufficient time to become informed.”
The researchers add: “Patients who are completely informed of all their treatment options will make higher-quality shared decisions about treatment and will experience better long-term survivorship outcomes.”
When Doc Sends Link to Web-Based Decision Aid
For the second study, Dr Neuman and colleagues conducted a randomized, blinded, prospective trial in which adult women who had been newly diagnosed with stage 0-III breast cancer and who were considering breast surgery were sent an email with a link to either a Web-based decision aid or three standard information websites prior to their consultation.
The decision aid originated as a DVD and was subsequently converted for use on a Web-based platform. The aid employed static, didactic information and video clips to encourage personal values and preferences. Modules on invasive and noninvasive cancer and reconstruction were available to all participants.
To assess the impact of the decision aid, the team administered the five-item Breast Cancer Surgery Decision Quality Instrument on arrival at the clinic, before the patient’s first surgical consultation.
Complete data were available for 227 women who completed the questionnaire. Of those patients, 116 received the decision aid, and 111 were sent links to standard websites.
The median age of the patients was 59 years; 99% were white; and 65% had received a college degree or higher education. There were no significant differences between the two groups in terms of their demographic or clinical characteristics or their experience with the Internet.
Patients who were given the decision aid had significantly higher overall knowledge than those who were sent to standard websites. The median proportion of correct answers was 80% vs 66% (P < .02).
Crucially, patients given the decision aid were more likely to recognize that waiting a few weeks to make a decision regarding breast cancer surgery would not negatively affect their survival, at 72% vs 54% (P < .01).
There was no significant difference in the proportion of patients who underwent breast-conserving surgery, at 74% among women given the decision aid vs 72% among those sent to standard websites (P = .9).
There was no association between surgery received and knowledge level (P = .9).
Effectively conveying that there is time to make a decision…may be especially valuable.
The researchers write: “Effectively conveying that there is time to make a decision for type of breast cancer surgery may be especially valuable because this may decrease the urgency patients feel about making a decision.
“This may increase the quality of the patient-surgeon interaction and ultimately lead to higher quality, preference-aligned decision making around breast cancer surgery,” they add.
No sources of funding for study 1 have been disclosed. Study 2 was funded in part through the Building Interdisciplinary Research Careers in Women’s Health Scholar Program, the University of Wisconsin Carbone Cancer Center, and Mentored Training for Dissemination and Implementation Research in Cancer. For the investigators in study 1, a listing of relevant financial relationships is included in the published article. The investigators in study 2 have disclosed no relevant financial relationships.
J Am Coll Surg. Published online December 12, 2017. Study 1, full text; Study 2, abstract
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