Editor’s note: This is the second in a two-part series on cancer and depression. Read part one here.
In a typical half-hour appointment with one of her sarcoma patients, Dr. Elizabeth Loggers has enough time to talk through a patient’s course of treatment and make sure she answers all their questions — and not much else.
But these matters are just one portion of the host of concerns that cancer unleashes on patients and their families: from depression and anxiety to loss of physical function from lymphedema to fears for their children.
It’s easy for doctors to run out of time, or just not ask the right questions to uncover these concerns, Loggers said. And this means that patients too often don’t receive — or even know about — supportive services that can help, such as psychological counseling, physical therapy or nutrition assistance.
To ensure that patients and their families are connected with supportive services that can improve their overall wellbeing, Seattle Cancer Care Alliance — Fred Hutchinson Cancer Research Center’s patient-care arm — is implementing systematic screening for psychological and social concerns, with referrals to supportive services, for all new patients.
“While I would love to be all things to all people, we have to be realistic about the immense need that these patients and families have, and [physicians’] limitations to identify those during a busy clinical practice,” said Loggers, medical director for the Supportive and Palliative Care Service at SCCA, an assistant member of Fred Hutch’s Clinical Research Division, and a medical oncologist who cares for adult sarcoma patients at SCCA.
“We need these tools to help us do that better. That’s our goal,” she said.
The effort to develop and implement the screening was led by Loggers and Moreen Dudley, a clinical operations director at SCCA who oversees all of the clinic’s supportive care services.
“This is something we really need to do … Really understanding that, that cancer’s a disease but there’s so much more that goes into taking care of patients,” Dudley said.
SCCA and Fred Hutch leadership strongly supports the effort.
”I believe, and I think all of us believe, that the psychosocial status of a patient plays a huge role in their ability to tolerate therapy and recover,” said Dr. Fred Appelbaum, executive director and president of SCCA and executive vice president and deputy director of Fred Hutch. “And if we ignore that and only focus on what is in the narrowest sense viewed as ‘medical issues,’ we are missing a huge part of what goes into health and plays a role in recovery.”
It’s a vicious circle: Many cancer patients experience significant depression or another type of psychosocial distress, and, in turn, their psychosocial distress can lead to worse outcomes from their cancer— even an increased risk of death, says a definitive 2006 report on the topic from the Institute of Medicine.
“We know that up to 40 percent of patients have enough distress that it requires intervention, which can be pharmacological or behavioral,” Dudley said. “So we know that this process causes distress. Cancer causes distress in so many ways.”
In fact, a national body that accredits cancer centers, the American College of Surgeons’ Commission on Cancer, now requires cancer centers to have a mechanism in place to address the psychosocial needs of patients.
SCCA’s psychosocial screening tool is currently being used in the sarcoma service (where it was piloted) and in the care of patients with melanoma and cancers of the kidney, endocrine system, digestive system, genitourinary system, and nervous system. The team expects the screening to be rolled out for new patients with other types of cancer by mid-April.
The tool is a 40-item online questionnaire that asks patients to rate their responses to a variety of quality-of-life, psychological and spiritual concerns. The items on the questionnaire range from “Little interest or pleasure in doing things” and “I am able to work” to “I have swelling in parts of my body” and “Have you recently lost weight without trying?”
The questions were chosen by experts from across SCCA’s supportive care services, including social work, physical therapy, and the chaplaincy, from the best-available screening tools in each discipline, Loggers said.
After a patient completes the tool online, the results are automatically scored and uploaded into their chart. The system sends the patient an email with their results and information about the supportive services available to them. If the patient scores as distressed in any particular area, their email suggests specific services they might find helpful. The appropriate supportive care staff members are automatically notified to reach out to the distressed patient to offer their services.
SCCA’s information technology team spent three years building the software system on the back end of the tool, Dudley said.
“It looks very seamless. But a lot of work went into creating this,” she said.
Dudley and Loggers both credit team member Petr Horak, program administrator for SCCA’s Palliative Care Service, with coordinating cross-team efforts and educating staff and patients on the tool. A steering committee composed of individuals across SCCA guided the effort.
Loggers suspects that every week she has unwittingly missed psychosocial distress in her sarcoma patients amid the crush of other concerns she must manage as an oncologist. She remembers one incident vividly, when a patient who seemed to be doing well on chemotherapy mentioned at the end of one visit that she was experiencing a staggering four or five episodes of diarrhea a day.
“I almost fell out of my chair, like, you’ve got to be kidding me,” Loggers remembers. “I thought, ‘Oh my gosh, how is that possible?’”
The patient said she read that diarrhea was a possible side effect of her chemo drug, Loggers said. But the problem was so bad that her social life was curtailed.
“You just realize how these small things can have dramatic effects on quality of life,” Loggers said.
The patient hadn’t told her care team sooner because she thought it was normal and she didn’t want to complain. That is one of the many reasons why patients might not mention psychosocial concerns to their doctors — and why systematic screening is so necessary — said Dudley, a social worker by training.
“I suspect it’s because if you are relying on this person to save your life, you don’t want to disappoint them. And there’s stigma around depression and anxiety. You may think, ‘This is part of what I’m supposed to be feeling, so I can’t complain about it.’ There are whole layers of things for why people wouldn’t do that.”
And, like doctors, patients also feel the time crunch of a short clinic visit, Dudley said. “You know that if you’re going to see your doc for 20 to 30 minutes, you’re going to talk about things like your disease, what stage are you, do you need more chemo, do you get to have chemo. So there are things that maybe trump, ‘I feel sad or depressed or hopeless,’ those types of things.”
The team’s first goal with psychosocial screening, Loggers said, “was really to create advocates of our patients and families,” so they knew they could ask for supportive services they could benefit from, even if they didn’t need them at that moment.
One of the next steps is to implement screening at multiple time points in a patient’s treatment, knowing that patients may have different psychosocial needs as their situation progresses. Dudley said that she hopes that her team’s efforts will normalize supportive care so that patients are able to access it whenever they need it.
“If you think about not just depression and anxiety, but if you need financial assistance, if you have nutrition issues, if you need to see physical therapy, if you have existential distress — if we’re starting to address those things early with you and you feel supported — and we’re going to find this out — are we able to really make a difference?”
Susan Keown is a staff writer at Fred Hutchinson Cancer Research Center. Before joining Fred Hutch in 2014, Susan wrote about health and research topics for a variety of research institutions, including the National Institutes of Health and the Centers for Disease Control and Prevention. Reach her at firstname.lastname@example.org or follow her on Twitter at @sejkeown.