What does the patient really need?

Multipronged approaches may keep patients from slipping through the cracks
Illustrated by
Carolina Moscoso

Patient and doula names have been changed to preserve privacy.

You know, that blood pressure cuff never did come,” Gisele Bale told Janelle Jones in May. Before they became acquainted, Bale was supposed to get a cuff through her insurance. Somehow the request got lost in the vagaries of paperwork. But Bale’s cardiologist said she needs a digital cuff for daily blood pressure checks to see whether her medication is keeping her numbers down—especially now that Bale is on chemo for early stage breast cancer.

“I’ll see what I can do,” Jones, her doula, said.

Doctors found a pea-sized tumor in Bale’s breast when she went for her mammogram in the spring. The news shook her. She’s in her 50s with no family history of breast cancer.

“I cried all day,” she says. “Then I calmed myself down. I talked to myself: ‘We’re going to get through this. God doesn’t put nothing in front of you that you can’t handle.’”

Bale’s clinical team helped her enroll in a doula program for Black women with breast cancer. Bale had only heard of doulas caring for pregnant women. She feels blessed to have Jones as a guiding doula for the journey of cancer treatment.

Bale is usually the person taking care of everybody else as the oldest sibling in her family and as a grandma and neighbor who sits on the porch and keeps the kids on the block in line. She says it’s comforting to have a doula for emotional support and help with practical matters. Jones brought Bale a wig book to prepare for hair loss. Jones also offered to be a backup driver for Bale, who doesn’t have her own car, in case Bale can’t catch a ride to the clinic with her daughter or neighbors. When Bale was hospitalized for an infection following her first round of chemo, Jones helped her keep her faith. And, in June, Jones delivered that much-needed blood pressure cuff.

Black women tend to have more severe reactions to chemotherapy, says Margaret Rosenzweig, University of Pittsburgh Distinguished Service Professor of Nursing, who founded the doula program last year. One might think all breast cancer patients have similar success rates because treatments are targeted to the tumor markers and stages of tumors. Yet Black women with the same genetic tumor types and treatment plans as white women are still more likely to struggle, she says. Nationally, Black women have the lowest five-year survival rate of any group.

“We found, through talking to patients and through looking at our own patient outcomes, that Black women were just not receiving the same, for instance, doses of chemotherapy that white women were,” says Rosenzweig, who is also a nurse practitioner at UPMC Magee-Womens Hospital. “They were recommended appropriate chemotherapy according to their tumor. And they were coming to treatment, but often they were not able to complete the recommended doses due to toxicity.”

These are motivated patients who are actively taking part in the extraordinary offerings of modern medicine, she says; yet its promise is still unfulfilled for them.

Breast cancer research is a poster child for the power of precision medicine (i.e., examining genetics to tailor treatments for individuals and patient subgroups) and the power of translational research (i.e., generating research questions during patient care and devising new treatments). The field touts the first biomarkers, first targeted therapies and first multigene tests for interrogating the biology of tumors. While survival and quality of life for all patients have improved dramatically over the decades (today the five-year survival rate is roughly 90%), there’s still no known cure for breast cancer once it spreads, and inequities persist among patient groups.

Struggling with toxicity from chemotherapy is only one example of a larger problem faced by patients across the health care spectrum. Life expectancy is declining in the United States (not just because of COVID-19), and positive health outcomes are lower than those of comparable nations—particularly among underrepresented populations. Here’s a shameful for instance: In Pittsburgh, about 13 of every 1,000 Black babies die before they turn 1, compared to fewer than 2 of every 1,000 for white babies, according to a 2019 report by Pitt researchers.

A doula program gives breast cancer patients physical and emotional support

The U.S. health care system incentivizes high-tech interventions like chemotherapy and surgery—yet it underestimates the value of providing wraparound support to guide patients physically and emotionally as they prepare for interventions and procedures or deal with side effects and complications. Caretaking solutions like having a doula deliver a blood pressure cuff tend to be overlooked.

Rosenzweig and others have found that listening to and partnering with patients can yield great rewards.

Her team is evaluating ways to incorporate both low-tech and high-tech solutions for patients, balancing crucial bench-to-bedside research and clinical care with extending equally crucial care on front porches and in community centers. It’s a multipronged approach to get Black women with breast cancer the help they need: now and in future generations.

Support and love

In July, Bale was recovering from a round of “red devil” chemo treatment—as her Facebook breast cancer support group calls it—when she learned her longtime pharmacy unexpectedly closed for good. She urgently needed a refill of her daily blood pressure medication. Jones was out of town, but she offered encouragement to remain calm. After a number of calls, Bale got her medication.

Bale has at least 12 more weeks of treatments. She’s looking forward to feeling well enough to bring out her cotton candy machine and video projector for a neighborhood family movie night. Plus, she has plans to coordinate a children’s etiquette course at her local community center. Most of all, she’d like to keep up with her grandkids.

For now, she’s focusing on taking slow but restorative walks around the neighborhood and forcing herself to eat her chicken or oatmeal even when she isn’t hungry (because of the chemotherapy). In her meetings with Jones, they role-play what Bale will tell her doctors about her symptoms and concerns. Jones checks in on Bale’s daughter when they all meet at the clinic for Bale’s treatments, and they pass time chatting about common acquaintances.

Bale hopes the doula program can expand to more people, with all kinds of diseases, because everybody could use a doula to help them get better health care and live longer, productive lives, she says.

“I’d love for it to be a worldwide thing. Everybody needs support and love.”

Rosenzweig hopes the program will generate enough powerful data to convince Medicaid and insurance companies to reimburse their members for breast cancer doulas in the same way they do for pregnancy doulas.

She founded the pilot doula program in 2021 with an African American cancer support group and other community partners after noticing the weekly patient-support program she leads for people with metastatic breast cancer wasn’t fully meeting many Black patients’ needs.

Women would talk about the pressure to be strong, yet said they didn’t always get the emotional support they needed. And they worried about what would happen to their families if they died from the disease.

About 50 Black women in Pittsburgh are diagnosed with advanced-stage breast cancer every year, and 80% live in low-income neighborhoods. The doula program, which won seed funding from Pitt’s Clinical and Translational Science Institute innovation program (known as PInCH), trains nonmedical doulas to provide companionship outside the hospital. The doulas meet regularly with Rosenzweig’s team to brainstorm solutions for patient needs. (That’s how Jones was able to get Bale’s digital blood pressure cuff.) And they assist families if patients don’t survive.

Rosenzweig’s team is still assessing the effectiveness of the doula program for this population. Yet another program with a similar combination of high-touch and high-tech approaches has been saving lives of surgery patients referred for a range of procedures to UPMC—see sidebar, “Marathon ready.”

And a nurse navigator program supporting patients with blood cancers has been successful at UPMC Hillman Cancer Center in improving patient satisfaction and reducing hospitalizations and costs.

The U.S. health care system incentivizes high-tech interventions—often ignoring simple needs like a blood-pressure cuff.

We are stardust

Rosenzweig is investigating multiple avenues to figure out why there are disparities in how Black patients experience toxicity from chemo. She leads an NIH-funded study tracking, throughout their chemotherapy regimen, patients’ stress-related symptoms or symptoms from underlying conditions. Initial results show Black women report higher numbers of symptoms than white women before even starting chemo sessions.

Rosenzweig’s team also audiotapes clinical visits (with consent, of course) to gather data on how clinicians respond to symptoms reported by patients.

And the team collects genomic specimens for collaborators to evaluate how patients metabolize the chemo drugs causing the most toxicity. Rosenzweig is applying for grants to fund research linking her symptom data with genetic data to investigate inflammatory pathways, telomeres or immunological responses that can influence either cancer progression or the ability to withstand treatment.

Her foray into genomics came about in the early ’10s after Rosenzweig met a European couple new to Pitt—breast cancer research partners and spouses Adrian Lee and Steffi Oesterreich, both professors of pharmacology and chemical biology. Lee and Oesterreich were accustomed to collaborating with cancer surgeons to get tissue samples, yet they’d never met a PhD nurse like Rosenzweig with a federally funded research portfolio—not in their native Great Britain or Germany, or at other U.S. institutions for that matter.

As Lee tells it, he phoned Rosenzweig one day to ask: “What do nurses do for research?” Together, they figured out how they could use routine blood draws to build a bank of liquid biopsies, enabling the scientists to sequence tumors from bits of tumor DNA floating around in the blood rather than using tissue taken through invasive biopsy procedures.

Lee, the Pittsburgh Foundation Professor of Precision Medicine who directs the Pitt/UPMC Institute for Precision Medicine, and Oesterreich, Shear Family Foundation Professor of Breast Cancer Research, came to Pitt in 2010, drawn by the Pitt Biospecimen Core, which contains 800,000 biological samples and counting. (It’s so big that the NIH’s Cancer Genome Atlas Project, a landmark project sequencing 33 cancer types, was greatly supported by samples from Pitt’s biobank, Lee says.)

The biobank includes more than 10,000 breast cancer samples, and Lee says when Pitt scientists and physicians started it more than 20 years ago, they had the foresight not only to collect tumor tissue samples, as was the standard at other centers, but blood samples and normal tissue samples for comparison, as well.

Lee and Oesterreich were also attracted to Pitt’s partnership with UPMC and its wealth of patient data. One of their very recent papers answers the question of whether oncologists should prescribe certain aggressive therapies for breast cancer patients older than 70. After examining the electronic health records of more than 50,000 breast cancer patients treated at UPMC over the past 20 years, they concluded that patients older than 70 received little benefit from the aggressive therapies. “It’s an interesting case of precision medicine where you are kind of trying to ramp down how much we do,” says Lee. “We’re not giving less, we’re just trying to be more precise in what we give.”

Not long after coming to Pitt, Lee and Oesterreich realized the biobank included a few post-mortem samples from a handful of metastatic breast cancer patients who’d asked to donate their tissue after they died from the disease. Lee and Oesterreich compared tissue from when patients were in the early stages of the disease through the final stage. Their findings led to a landmark paper in the field.

“There was this morphing of the estrogen receptors over time, making endocrine therapy more—or less—effective,” says Rosenzweig. “That was the inspiration to say, ‘We really need a formal program. This is going to yield so much information.’”

Lee, Oesterreich, Rosenzweig and colleagues established Hope for OTHERS (Our Tissue Helping Enhance Research & Science). Participants donate tissue throughout the progression of the disease and eventually, if they die from it, through a rapid autopsy when living cells are gathered within four to six hours after death. A program liaison attends Lee’s lab meetings as well as Rosenzweig’s weekly patient meetings.

The team has learned that patients find value in helping meet the needs of women who will come after them.

Participants—of all ethnicities—enrolled in the Hope for OTHERS tissue donation program say it’s gratifying to know they will be helping to cure breast cancer even after they’ve died.

Patient Stella Martinez (not her real name) notes that even though medicine has come a long way in understanding breast cancer, what’s still unknown is staggering. It makes her think about research on deep space: The universe is vast and mysterious, then along comes an advancement like the Webb telescope that leads to new clarity. Our new view of the universe is raising more questions and generating more excitement about discovery.   

Martinez sees her part in the tissue donation program as leaving “her particular jar full of stardust.”

Literature suggests that Black patients are less willing to participate in research, but Rosenzweig’s own experience and her surveys about patient willingness show the opposite. She acknowledges the ugly history of unethical trials and present-day racism, but in the context of trying to better understand disparities and helping all people to achieve better health, many patients find participation meaningful and uplifting. When Rosenzweig asks, “Would you be willing to be in studies that look at your genetic profile in relation to symptoms?” the answer is usually yes.

Marathon Ready

High-touch and high-tech approach helps surgery patients

In the United States, up to 20% of patients have major complications after a procedure, says Aman Mahajan, an MD, PhD, MBA who chairs the Department of Anesthesiology and Perioperative Medicine. In fact, mortality after surgery is one of the leading causes of death worldwide.

“Surgery can be incredibly difficult on a patient’s body. In some cases, it can have the same toll as running a marathon,” says Mahajan, the Peter and Eva Safar Professor at Pitt.

A wrap-around program out of the department does a risk assessment (mining UPMC’s huge patient database) for each patient case, and through shared decision-making between the patient and their doctors and surgeons, develops a pathway for optimizing patient health before surgery, reducing post-operative complications.

If the team deems surgery is the best course, the program assigns surgical coaches to help the patient be at their best health before and after the procedure. That might look like incorporating a 30-minute walk into their days, or, say, changing their diet to bring down blood sugar. The coaches check in remotely to mentor patients through their fitness challenges and surgical journey.

“So, on one hand, you can imagine we have this AI machine-learning program; but on the other end of the spectrum, we actually have this very humanistic approach to managing these patients,” says Mahajan.

And it works.

A 2018 cohort of 24 high-risk orthopaedic patients referred to UPMC’s Center for Perioperative Care (CPC) lost 32 pounds on average and had better outcomes.

Following about 10,000 patients enrolled in optimal care pathways for surgery across four UPMC hospitals throughout two years, Stephen A. Esper (MD ’07, MBA ’09) and Jennifer Holder-Murray, an MD, reported a 30% increase in survival after several types of procedures (Annals of Surgery, November 2020). Esper, an assistant professor of anesthesiology and perioperative medicine, is the director of the CPC. Holder-Murray is an associate professor of surgery and surgical director of the CPC.

UPMC Health Plan now requires patients referred for certain operations to participate in the department’s optimization programs, and a venture studio out of New York is digitizing and commercializing Pitt’s approach. Other elite medical centers are looking to the new platform and coaching program, called Pip Care, to meet this critical need, says Mahajan.   —Erica Lloyd

Read more from the Winter 2022/23 issue.