Counseling Improves Survivorship Plan Implementation for Low-Income Breast Cancer Survivors

May 16, 2017, by NCI Staff

Results from a randomized clinical trial show that providing counseling to breast cancer survivors about their survivorship care plans may help their doctors provide better care.

In this NCI-supported trial, doctors caring for low-income, predominantly Latina breast cancer survivors who had undergone a nurse-led educational session on their care plan were much more likely to address issues such as depression and hot flashes than the doctors of survivors who didn't receive the counseling.

"The nurse counseling session was empowering [for the survivors], who were from a vulnerable population that is generally disempowered in their health care," explained the study’s lead author, Rose Maly, M.D., of the UCLA Jonsson Comprehensive Cancer Center. The combination of a care plan and the counseling session, she continued, "set this up to be a powerful and impactful intervention," she said.

Results of the trial were published April 18 in the Journal of Clinical Oncology.

Learning to Advocate for Oneself

The National Academy of Medicine (formerly the Institute of Medicine) and professional oncology groups strongly recommend the use of survivorship care plans, which summarize treatments a patient received and map out their follow-up care. Anecdotal reports have suggested that patients appreciate receiving such plan.

Disappointingly to researchers, previous randomized trials of survivorship care plans have shown little impact on improving quality of life or addressing survivors’ health concerns. However, none of these trials had targeted low-income, underserved cancer survivors, who may have substantial survivorship care needs, Dr. Maly and her colleagues wrote.

For their trial, the UCLA team recruited 212 low-income women who had finished breast cancer treatment at either of two public hospitals at least 1 month before study entry. Most participants were Latina (72.6%), and all intervention materials were adapted for Spanish-speaking as well as low-literacy participants.

Women in the intervention group received personalized care plans based on the Journey Forward survivorship care plan builder. After receiving her plan, each woman reviewed it in a 1-hour private session with a bilingual, bicultural nurse.

The nurses encouraged the women to write down their three most important survivorship questions and then engaged in role play to help the women practice discussing these questions with their doctor and asking about the implementation of the recommendations in her survivorship care plan.

The counseling session appeared to help "set expectations, and showed that these are completely reasonable questions to ask your physician," said Erin Kent, Ph.D., of the Outcomes Research Branch in NCI's Division of Cancer Control and Population Sciences, who was not involved with the study.

Following their counseling session, the women were encouraged to make an appointment with the doctor most involved in their cancer care to discuss the care plan. Each woman in the counseling group received a copy of her care plan to take with her, and one was also mailed to the clinic where she received her care. Participants in the control group received only usual care during the trial but were given their own personalized care plans at the end of the study.

The researchers calculated a physician implementation score for each patient, on a scale from 0 to 100. This score identified how many of the individual care needs identified in a woman’s care plan were addressed by her doctor at appointments over the following year, and was compiled from quarterly phone calls with participants.

After a year of follow up, the mean physician implementation score for recommended breast-cancer survivorship care was 60.8 for the intervention group, compared with 48.6 in the control group.

Overall, women in the counseling group also reported greater adherence on their part to recommended care, such as following up with cancer screening, than women in the control group, although this difference did not reach statistical significance.

Counseling had a more dramatic effect among Latina women. More than 80% of Latina women in the intervention group reported that they followed recommended care, compared with approximately 46% of non-Latina women in the intervention group. Similarly, about 97% of Latinas reported the survivorship care plan improved communication with their doctors, compared with approximately 74% of non-Latinas.

Future Targets

The researchers didn’t see all the outcomes they had hoped for, Dr. Maly said. For example, there was no difference in reported quality of life between the groups. And, surprisingly, women who were married or had a partner were less likely than single women to adhere to recommended survivorship care.

These findings point to important areas for additional research, said Dr. Kent, including how to best involve caregivers and family members in survivorship care planning, the most effective timing of survivorship interventions, and what parts of survivorship care planning best help patients and their doctors adhere to recommendations.

"In this study, the nurse-led counseling session may have made [the care plan] more salient, tailored, actionable, and ultimately more effective for these women," explained Dr. Kent. "So I think we need to look really closely at the content of these interventions."

Although more research is needed, Dr. Maly said, the trial’s findings show that "survivors should not be afraid to talk to their doctors about their care plans and how to implement them. Physicians can be quite responsive to patients’ requests."