Addressing Disparities in Long-Term Survivorship and Quality of Life for Young Patients With Breast Cancer

Over the last several decades, significant advances in the care of patients with cancer has allowed for a majority of individuals who are diagnosed with cancer today to be long-term survivors, either living with a history of disease or living with chronic disease, explained Ann H. Partridge, MD, MPH, a professor of medicine at Harvard Medical School and vice chair of Medical Oncology at Dana-Farber Cancer Institute (Dana Farber). During the European Society for Medical Oncology (ESMO) Congress 2024 opening session, Partridge explained that in her focus area of breast cancer, the opportunity for long-term survivorship is particularly present; however, there are groups of patients who continue to have more disparate outcomes despite this trend.

The opportunity for long-term survivorship following breast cancer is present for patients. Image Credit: © DragonImages - stock.adobe.com

Based on 5-year cancer survival data for adults aged 15 to 99 years in England who were diagnosed between 2016 and 2020 (and followed up with until 2021), over 85% of women with breast cancer are estimated to be long-term survivors. However, data from the SEER dataset (2010-2015) in the United States have shown that there is a very clear disparity among survivors of breast cancer based on age, with young women having a higher risk of recurrence and mortality from breast cancer. Specifically, women aged 61 and older in the US dataset were shown to have approximately 95% survival at 6 years (P value <0.001), while women aged 60 and younger had approximately 90% survival at 6 years (P value <0.001).

“There's a 5% difference [in survival among] our younger patients, [and this is caused by] lots of different reasons,” Partridge said during the ESMO session. “Yet the vast majority of women will have long-term survival, especially in higher income countries.”

In Sub-Saharan Africa, this disparity in age and outcome is even worse, according to Partridge. However, worldwide this trend of mortality and recurrence being higher in individuals younger than age 60 is also associated with another challenge: worse quality of life.

“Of course, these 2 things are often related, and anyone who's cared for these patients in clinic knows that it's just more complicated for our youngest patients. [They] have to deal with the usual questions [but these] are harder questions for young patients,” Partridge said.

In data from the CANTO cohort of survivors of breast cancer published in the Journal of Clinical Oncology in 2022, investigators analyzed group-based trajectory using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire‐Core30 (EORTC QLQ‐C30) summary score to assess quality of life after chemotherapy. The data showed that in 4131 women with a follow up of 4 years, one of the predictors of lower quality of life based on the EORTC QLQ‐C30 scores was younger age. These patients also had a cluster of characteristics other than younger age as well, noted Partridge, including comorbidities, lower income, take-home hormonal therapy, smoking, and higher body mass index.

“We're leaving them with scars—both literal and figurative scars and experiences from their cancers. And we've known for some time [about] this quality of life disparity,” Partridge said. “So, we're trying to piece apart why and how we can help them from a disease standpoint, and how we can help them from a psychosocial standpoint.”

In 2005 at Dana Farber, Partridge and her colleagues started a program called Young and Strong for young adults with breast cancer to help address some of these challenges. This program looks to address issues including fertility, genetics, parenting, sexual functioning, menopausal concerns, body image, exercise and nutrition, balancing school and/or career, relationship building, and challenges associated with living with advanced breast cancer. Within the program, health care professionals at Dana Farber had 4 pillars of care: providing expert medical care, offering comprehensive support, combating isolation by building community, and conducting groundbreaking research.

“While we're waiting for more research to mitigate their disparities and address them, we've established this program, and I'm thrilled that we've had people from all over the world come spend time with our group and develop their own programs in places ranging from the United States, Korea, and Israel to Mexico and Geneva and places beyond,” Partridge said. “Our young patients, they sit in waiting rooms, and even though there is a rise in cancer in young adults, they sit in the waiting rooms, and they don't see anybody else that looks like them, even in our clinics [at Dana Farber].”

Partridge noted that one of the other things that Dana Farber has focused on in the Young and Strong program is trying to go beyond the institution and its network.

“I just talked about our international collaborations, but even in Massachusetts, where I live and work, sometimes we don't reach all of our patients, and we know there are well-documented disparities based on socioeconomics and race and class throughout the world. So, we've also created virtual programs to try to reach harder to reach young adults to support them better,” Partridge said.

The latest example of this outreach is the Young, Empowered, and Strong (YES) self-monitoring and management program. The web-based portal intervention is designed to get to the heart of patients’ challenges and support them better. Specifically, YES uses a text-based prompting system that capitalizes on the emergence of patient-reported outcomes. In YES, patients receive a text message prompt to complete a survey in the YESonline portal. They then complete an assessment of their concerns and symptoms, and tailored content would be triggered and made available based on their responses.

For example, if patients noted concerns around treatment and its impact on fertility, information would be triggered regarding these concerns in the form of videos and other informational resources. If patients noted symptoms of anxiety or stress in their assessment, informational resources on mindfulness tools would become available for them in the portal.

“So, they don't get things they don't care about, they get things they do care about, and that's curated by experts in that field so that you can trust the information,” Partridge said. “Now we've piloted this intervention with women who were newly diagnosed survivors and living with metastatic disease. What was fascinating was that there was clearly universal triggering of information and resources for the softer stuff, [such as] sexual health, menopausal issues, mental health, and symptoms—things that suggest that there's a very high need out there, which we all know, but it's harder to address in the oncology clinics when you're trying to pick which chemotherapy [to administer] while managing [occurrences of] febrile neutropenia.”

For this reason, the potential for virtual and novel interventions to mitigate these challenges for patients is significant. Specifically, in young women with breast cancer, triggering information related to fertility concerns may also be able to improve treatment adherence for this population. Partridge noted that in a 2006 cohort study of 1302 women aged 40 and younger in Massachusetts, Colorado, Minnesota, and Canada, interest in future biologic children was associated with an increased rate of nonadherence to treatment by 5 years. In this cohort, 26% (160) reported that concerns about fertility affected their treatment decisions.

Additionally, Partridge noted that, although historically health care professionals have thought pregnancy after breast cancer treatment may lead to recurrence, this has been shown to be a myth. In a paper authored by Partridge and her colleagues and published in the New England Journal of Medicine in May 2023, they showed that pregnancy was not associated with recurrence.

“The pregnancy itself was not associated with a worsening of anything. The women who got pregnant did better than the people who did not get pregnant. So the myth that getting pregnant… would somehow throw gasoline on the embers and cause recurrence is debauched,” Partridge said. “Secondary outcomes included time to pregnancy, and as you can see here, age alone was the big predictor and, when we looked at chance of pregnancy, IVF was the other big predictor.”

In the young women's cohort, Partridge explained that the data showed very similarly that at 4 year median follow up, age, financial comfort, and fertility preservation were the biggest predictors of a woman being able to have a baby after breast cancer in a non–ER positive breast cancer only group.

“So this is pretty consistent, and speaks to the importance of access to [IVF] treatment for patients being available,” Partridge said. “One of the most exciting things I've been a part of in the last several years was that just this past July in Massachusetts, our governor signed into law using some of the data that we had proposed, as well as the advocacy of our institution and advocate partners we work with, a fertility preservation law as part of the budget of our state. Very exciting, and we all know that we need to continue to advocate for our patients in ways like this.”

For this reason, Partridge explained that rigorous, prospective trials continue to be vital to understanding what patients with cancer and survivors need.

“But sometimes you also need rigorous, unique designs,” Partridge said. “So focused efforts are needed, though not only to do the research, but [also] to implement the research, especially when it's not about a drug being detailed to a patient or the providers. We need to partner with our colleagues, nationally and internationally, and our advocate colleagues to benefit all cancer patients and survivors.”

REFERENCE

Partridge AH. ESMO Award: Addressing the unintended consequences of cancer care. ESMO Congress 2024; Barcelona, Spain; September 13-17, 2024.