There are more than 15 million cancer survivors in the United States today. Thanks to early detection and improved treatments, that number is expected to grow to over 20 million by 2026. While these staggering numbers are cause for celebration, the flip side of the coin is that people with cancer often experience medical, psychological and social challenges long after diagnosis and primary treatment. Chronic pain, fatigue and depression from cancer treatment are not uncommon. Resuming everyday life can be an uphill battle.
Monitor and Manage
“Thriving with cancer or being cured of cancer are both wonderful,” says David Cella, PhD, chair of the Department of Medical Social Sciences. “But treatments often cause downstream problems that have to be monitored and managed. That’s what the Cancer Survivorship Institute does.”
Though many people equate survivorship with remission, the Robert H. Lurie Comprehensive Cancer Center of Northwestern University uses the term to describe patients from the time of diagnosis until the end of life. The center’s Cancer Survivorship Institute (CSI), started in 2013, integrates clinical service specifically tailored to these patients with research.
“It’s a clinical services and translational research hub that brings together supportive oncology clinicians and investigators from our Cancer Control and Survivorship Research Program,” says director Frank Penedo, PhD, Roswell Park Professor of Medical Social Sciences, Psychology, and Psychiatry and Behavioral Sciences.
That research program, also under Penedo’s direction, includes 38 faculty members from 13 departments and two Northwestern schools. Members focus on three areas: measurement science, determinants of optimal survival and intervention science.
For example, measurement science experts in the research program have developed brief, precise and clinically validated assessments to identify patients with depression, fatigue and pain that warrant closer attention by the psychosocial and medical teams. The institute then implements the distress screening and refers supportive oncology clinical care.
Members are also developing and implementing technology-based tools using smart phones and internet-based psychosocial interventions to offer education in areas such as stress reduction and symptom management.
“These evidence-based tools are designed to enhance the survivorship experience and address specific and unique needs of cancer survivorship post-primary treatment,” Penedo explains.
Northwestern Medicine is ahead of the curve in the area of distress screening, having started its process 10 years ago. Cella, a 30-year veteran in the field of cancer survivorship and outcomes measurement, was instrumental in developing the Patient-Reported Outcomes Measurement Information System (PROMIS) and implementing it at the Lurie Cancer Center. Funded under the NIH Roadmap for Medical Research Initiative, PROMIS is a cooperative network comprised of Northwestern and six other universities charged with creating a common publicly available instrument to measure patient-reported outcomes across conditions.
Cancer patients are exposed to a screenings using PROMIS measures through Northwestern’s patient portal, MyChart.
“The Lurie distress screening program is like a laboratory,” Cella says. “But we don’t draw blood and we don’t spin it and give you a platelet count. We ask questions and produce a report.”
PROMIS takes administering patient surveys to new levels with advanced technology and modern measurement theory. Applying computer adaptive testing, which is used on standardized tests such as the Graduate Record Exam, the system tailors successive questions on the patients’ last response to minimize administrative burden.
The system screens for pain, depression, anxiety, fatigue and problems with functioning. Patients are asked if they have social work needs and if they want to talk to anyone about spiritual issues, finances or their treatment. Patient results immediately populate their electronic health record and any severe symptoms trigger notifications to providers who can then make necessary referrals and care decisions.
“The Lurie PROMIS screening sends an immediate message to patients that we care not just about their tumor, but about how they are functioning and how they feel,” says Cella. Investigators also benefit, as they can evaluate if new or alternative treatments result in better, worse or similar outcomes than previous treatments.
“Doing this on a system-wide basis is still very new,” Cella notes. “We’re one of just a handful of places that have made this operational.”
Survivorship Supportive Services
While Cella describes the institute’s screening process as a laboratory, he says supportive services “are run like our version of precision medicine: the right treatment to the right patient at the right time.”
The CSI offers a variety of comprehensive supportive oncology services under the direction of Timothy Pearman, PhD, professor of Medical Social Sciences and director of supportive oncology. These services include counseling and emotional support, physical therapy, pain management, nutrition education and fertility support.
Sheetal Kircher, MD, ’11 GME, assistant professor of Medicine in the Division of Hematology/Oncology, is the CSI’s medical co-director and director of the survivorship specialty clinics, which offer patients specialized survivorship care and education. An important part of the clinics’ offerings is a treatment summary and survivorship care plan (SCP), which patients can share with their primary care physicians to use during follow-up care. Since 2015, cancer centers accredited by the American College of Surgeons Commission on Cancer, including the Lurie Cancer Center, must deliver SCPs to patients completing primary cancer treatment with curative intent — patients with stage one through three and a few stage four cancers.
Sofia Garcia, PhD, ’05 GME, assistant professor of Medical Social Sciences and the CSI’s translational research program director, has developed a system that can auto-populate 80 percent of the information that goes into the care plans through drop-down menus and data pulled from an electronic data warehouse.
“Sofia has been instrumental in leading the development and integration of our SCP delivery program in the CSI clinics through foundation money she received through the Lynn Sage Cancer Research Foundation,” says Penedo, emphasizing the system as yet another way the CSI is ahead of the curve in patient services.
Supporting Young and Old
Programs targeting specific demographic groups seek to address the unique challenges of both the young and the old following cancer treatment.
The Survivors Taking Action & Responsibility program provides long-term follow-up support for adult survivors of childhood cancer. The Adolescent and Young Adult Oncology Program is designed for adolescent and young adult oncology patients facing a unique set of challenges including infertility, secondary cancers and heart conditions.
Older cancer survivors have their own unique needs: They may have comorbidities — the simultaneous presence of two chronic diseases or conditions — take multiple medications or have age-related declines. All can further compromise adjustment to the post-treatment phase of cancer survivorship. So patients seen at the clinic benefit from tailored care plans provided by a multidisciplinary team consisting of oncologists, a geriatrician, social workers, nutritionists, psychologists and pharmacists.
“With about 60 percent of cancers being diagnosed in people age 65 and older, cancer is perceived in many ways as a disease of aging,” says Penedo. “For an elderly patient diagnosed with breast cancer, we may also be dealing with comorbidities like hypertension or diabetes. As these add up, you have a cumulative challenge on the quality of life of the person.”
Meanwhile, the CSI and Supportive Oncology Program are available to help cancer survivors and their loved ones with services tailored specifically to patient needs. Patients receive help managing the physical, emotional and spiritual challenges of cancer and its burden on family and caregivers.
“With support from the Coleman Foundation, we have been able to develop and enhance our patient programs to deliver state of the art patient care and set the standard for other programs,” says Penedo.
Cella adds, “The organizing principle around all of our work is putting the patient in the center of what we’re here to learn, how we organize our thinking and our delivery of healthcare. That’s still a novel concept.”
Brick by Brick
Surviving cancer is a long and grueling battle, one that’s far from over the day a patient is declared “in remission.” Charles Chamberlain, 53, didn’t realize the support he would need to continue the battle until he met Timothy Pearman, PhD, director of supportive oncology at the Cancer Survivorship Clinic.
Having been diagnosed with stage four enteropathy-associated T-cell lymphoma, Chamberlain’s arduous treatment consisted of 10 months of chemotherapy and an autologous stem cell transplant at the University of Nebraska Medical Center. Once complete, he received maintenance chemo at another hospital in Chicago, but felt that he was falling through the cracks. Acting as his own advocate, Chamberlain searched until he found Pearman, who assured him that he would not get lost in the Northwestern Medicine system.
“I needed Tim to say to me, ‘You are a brave man. You continued to persevere. It’s normal to be frustrated. Any healthy human being would be frustrated. You are not crazy,’” Chamberlain recalls.
Along with receiving maintenance chemo at Lurie Cancer Center, Chamberlain has been seeing Pearman once a week over the last 15 months for supportive oncology psychotherapy. He considers his work with Pearman just as important as the care he received from his oncologist.
“Both are essential,” he says. “Tim helped me move from the trauma of treatment into the growth of survivorship.”
Chamberlain credits Pearman with helping him see the need for other supportive team members to address the challenges caused by treatment: a nutritionist to take care of his gastrointestinal problems, a neurologist to help his peripheral neuropathy, and a physical therapist to help him move through atrophy and improve his balance.
Chamberlain tells the story of visiting his long-time barber in the Lakeview neighborhood of Chicago after his transplant. He had changed from a 185-pound man with an athletic build to someone with no hair weighing 130 pounds. Initially, his barber didn’t recognize him, but when he did, the two men embraced, and the barber said the words that put his life into perspective: “The war is over. Now we rebuild the village.”
“That’s what I do with Tim,” says Chamberlain. “I rebuild the village.”