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The Coleman Supportive Oncology Collaborative, a group of professionals from academic, community and public cancer centers and hospice providers, addresses gaps in oncology care delivery.
In 2013, the National Academy of Medicine (formerly known as the Institute of Medicine) reported that the U.S. cancer care delivery system was in crisis, due to a growing demand for cancer care, increasing complexity of treatment, a shrinking workforce and rising costs. It called for changes across the board to improve the quality of cancer care. The Coleman Foundation, a private, independent foundation that funds cancer initiatives in the Chicago area, rose to the challenge.
The Coleman Foundation engaged a consulting group, the Center for Business Models in Healthcare, to coordinate a team of medical professionals from across the Chicago area. Over the last few years, they have been working on improving the quality of care for—and quality of life of—patients with cancer.
In 2014, more than 100 representatives from 35 institutions came together to assess the gaps in the current state of cancer care in their area. This group of professionals from academic, community and public cancer centers, cancer support centers and hospice providers, called the Coleman Supportive Oncology Collaborative (CSOC), identified specific areas of concern: patient distress, survivorship care and palliative care.
Following standards developed by The National Academy of Medicine and the Commission on Cancer (CoC), members of the CSOC formed design teams to create screening tools, education and process modifications to create real change.
Initially, the design teams’ initiatives were implemented in six institutions in the Chicago area. The second “cycle” of the program introduced four more institutions and additional areas of focus. In one year, the CSOC significantly improved systematic delivery of tools and programs to improve the quality of life and quality of care of patients with cancer.
The team presented their initial results at the 2017 Palliative and Supportive Care in Oncology Symposium in San Diego, California. CURE spoke with several stakeholders at the CSOC to learn more.All sites assessed by the CSOC had some level of screening for distress, but they didn’t always identify all the supportive care needs, said Christine Weldon, M.B.A., Director of the Center for Business Models in Healthcare, in an interview with CURE®.
One design team identified a need for a “best-of-breed” screening tool that identified not just distress but other psychosocial stressors, including physical symptoms — like pain, fatigue and physical function issues — and treatment and care concerns. So they created one.
Mary Pasquinelli, APN, Pulmonary and Medical Oncology, University of Illinois Hospital & Health Sciences System (UI Health), led a multidisciplinary team of physicians, nurse practitioners, nurses, clinic directors and social workers at her institution to implement ideas generated by the collaborative.
“We screened 100 patients, primarily lung and head and neck patients initially, to get a baseline understanding of their needs. Then we tried to match resources to the needs,” Pasquinelli said.
They added health literacy screening, for example. UI Health serves a deprived, minority population. Many patients are illiterate or health illiterate, Pasquinelli said, so the team developed new pathways for patients to fill out the screening form.
The screenings exposed patient concerns around transportation, housing insecurity and food insecurity, as well as physical and treatment concerns. Social workers at the hospital are working on improving transportation to clinics. They have partnered with an organization called the Wellness House — a complementary care center where people can go for free individual counseling, group counseling, nutrition groups, meditation, massage therapy and more — to bring support and nutrition groups to the patients at UI Health.
UI Health has also added staff to their nutrition team, and improved navigation to the palliative care team. The palliative care team is now embedded in their clinic, so they can be more available when their services are needed.
One surprising result of the distress screening, Pasquinelli says, was how many patients reported having anxiety and/or depression.
“You don’t really know until you ask,” she said. “Once you start screening, and realize that there are things we can do to help them, it improves patients’ treatment, their adherence, and it improves their quality of life. If they screen high for anxiety or depression, a physician talks to them, and maybe they go on medication that helps them. Screening high for these factors also triggers an automatic referral to our social workers. In addition, we have support groups right here on site. These support groups have started in the last few months, and it has been wonderful to see how this little community of people come together to support each other.”
Shelly Lo, a medical oncologist and palliative care physician at Loyola Medicine, is the team lead for implementation of the CSOC’s initiatives at Loyola University. She is already seeing the benefits of the screening process.
“I had a thirty-year-old woman with colon cancer who was coming in for chemotherapy,” she said. “She is married and works as much as she can. Her husband works, and she has a large, extended family. But it took me by surprise that on the screening tool, she checked off that she has concerns around food and housing. It was a question I wouldn’t have anticipated asking, given her circumstances—I wouldn’t think these necessarily would be concerns of hers. But they were. So based on that, I had our social worker see her, to talk to her about programs in the community, financial assistance so she could get food, etc. It was eye-opening for me, that the screening tool was able to help pick that up.” “When we talk about supportive oncology, we talk about everything around the quality of a person’s life,” said Weldon.
That includes having frank discussions with patients about their chances for survival, and how to plan for what lies ahead: survivorship planning for life after cancer or palliative care and end-of-life planning.
The CoC has periodically adjusted the standards around survivorship plans. The current standard recommends that patients who have completed active therapy and who are receiving curative treatment should receive survivorship plans.
The appropriate timing of implementing survivorship plans is not so clear to practitioners, says Weldon. Within 180 days of diagnosis could be too early for some patients, because if there is a high chance of recurrence, providers may not want to introduce this kind of planning too early. Sometimes, practitioners need to make judgement calls that may throw off some metrics, according to Weldon, but this is the complicated nature of the beast.
Palliative care faces a similar fluidity, as thoughts around how early to offer palliative care is changing. Shelly Lo, M.D., a medical oncologist and palliative care physician at Loyola Medicine, was on the palliative care design team that established best practices.
“I think there is a lot more data now that shows that early integration of palliative care seems to improve outcomes from a quality of life standpoint,” she said.
Weldon acknowledges that change is inevitable, and that as guidelines change, so could the recommended practices.
The CSOC has established educational courses for providers that are offered through the National Comprehensive Cancer Network, and these will be kept up to date as regulations change and are updated.Though the tools developed by the CSOC have been developed among institutions in the Chicago area, they can be applied more widely, and in fact have been shared with other programs nationally and internationally. Screening tools the CSOC developed are being used by hospital systems in Delaware and on the east coast, while survivorship tools have been adopted in Montreal, Canada. Training courses developed by the CSOC have been completed more than 3,200 times, and are being used internationally, Weldon said. To measure progress in screening and supportive care provision, the CSOC established metrics aligned with CoC standards and incorporated metrics related to the ASCO Quality Oncology Practice Initiative®.
Metrics were assessed in 2014 and again in 2015 (and 2016, though those figures are not yet publicly available). They measured whether providers had adhered to protocols within a certain number of days after patients’ diagnoses. For example, did patients have a conversation with a provider ensuring that they understood their illness? Did their provider give them a sense of their prognosis timeframe — whether they are likely to be cured, and if not, what is their life expectancy? Other measures analyzed whether patients received supportive needs screenings, signed advance directives, given referrals for palliative care or established survivor care plans.
Significant improvements were made in all areas, except for one in which the initial assessment showed the scores were already satisfactory (whether providers conducted explanations of the diagnosis and prognosis with the patient).
Pam Khosla, M.D., Chief of Hematology Oncology and Cancer Committee Chair at Sinai Health System, explained how implementation of CSOC tools and processes has helped move the needle at her institution.
“Every new oncology patient now gets the Coleman psychosocial distress screener at diagnosis and major milestones. It has made us much more informed about our patients and to refer them for appropriate interventions/consultations,” she said.
Sinai also added a new service of supportive oncology to their clinic in April 2017 after recruiting a new grant-funded position of bilingual supportive oncology coordinator. The supportive oncology team now includes an oncology advance practice nurse, nurse navigator, chaplain, social worker, supportive oncology coordinator, dietitian and physician in charge. In June of this year, they also added a unique service of behavioral therapy screening to this clinic and an oncology pharmacist.
“Our oncologists and patients are expressing gratitude for the added support of patients’ and families’ needs,” said Khosla. “One Spanish-speaking patient, recently diagnosed with metastatic lung cancer, felt very overwhelmed after her initial visit with her oncologist. After the visit with the supportive oncology clinic team she kept saying, ‘We wish everyone had access to such good care. It makes us feel so much at peace with the diagnosis, and that we are not alone in this journey. Your team gave me the strength to fight back.’”
One factor that contributes to the success of these efforts is that the CoC has accreditation requirements around supportive care. It’s something sites need to do anyway, and is not an area of competitive differentiation, Weldon noted.
“Team members from different sites work well together,” she said. “They share what’s working well, where challenges are. As time goes on, we have more and more openness and sharing across the sites.”
The multidisciplinary nature of the design and supportive care teams has also offered a great benefit to the CSOC’s success. Pasquinelli knows that supporting a patient physically, emotionally and spiritually across the care continuum is vital to providing optimal care. She said including nurses on the teams is valuable.
“I find that nurses take more of a holistic approach to patient care, where physicians sometimes are working more with the disease process,” she said. “Having a nurse as a part of the team helps provide the best evaluation of the patients and helps us develop the best care plans.”One goal of the CSOC is to identify opportunities for process improvements, and there is a design team working on ensuring that supportive care services are reimbursable by insurance.
The team identified insurance reimbursement codes that are appropriate for supportive care areas that had previously not been getting reimbursed. It is now working on getting providers to use those codes. The team also developed documentation to show how supportive care that is being given can be associated with those codes.
“There is a big shift in insurance going to more risk-based or bundled payments,” said Weldon. “In the fee-for-service environment, we want to make sure that those supportive services are bundled into the bundled payment plans, as well as incorporate assessments to ensure that the services are properly provided.”
Khosla noted that her team members are enthusiastic about working closely with each other on billing. It has now become possible to bill properly for services which had previously been done in a scattered manner, and, in most circumstances, incompletely. “Many team members have shared this experience at research meetings as well,” she noted.
Christine Weldon summarized one important lesson of the CSOC project so far: “Everybody involved in cancer care really cares about optimizing quality of life, but they don’t necessarily have the tools or the resources to do so. What we have done and continue to work on improving is to make sure everybody is aware of what resources exist, improve understanding of how to help the patients directly, and empower patients around communicating with physicians, nurses, and clinicians about what issues are in the way of their quality of life. That tends to be around psychosocial issues and about how to help them open up the lines of communications between patients, their families and their treatment team.”
The CSOC continues to work on making sure that there is quality of life assessment and support throughout a patient’s care trajectory and into survivorship. It will focus on implementing tools and service change in four sites that were added in the second cycle of the project. A pediatric extension of the CSOC has also been launched, The Supportive Oncology Collaborative for Children with Cancer, and its team will focus on improving the process for assessing and delivering psychosocial and supportive care to children with cancer and their families.
For more infomation, visit the Coleman Supportive Oncology Collaborative website.