Collaboration bridges gap between patients supportive oncology care

Supportive oncology — which aims to prevent or treat symptoms and side effects caused by treatment, and the psychological, social and physical issues related to a disease — can profoundly impact how well a patient responds to, complies with and benefits from medical treatment.

However, making all of these services available to patients has been a challenge for providers.

“The delivery of cancer care is so complex, and there are a lot of moving pieces and people with special needs who need expertise,” Shelly Lo, MD, medical oncologist and associate hospice medical director at Loyola Medicine in Chicago, told HemOnc Today. “We have gotten so focused on treatment-related side effects that some of the most basic things fall off the radar, especially because we have limited time with patients.”

To provide a more thorough approach to cancer care, The Coleman Foundation established Supportive Oncology Collaborative in 2014, a collection of 135 providers from 35 Chicago-area institutions who work together to consider all factors that affect a patient’s well-being, including supportive and survivorship care.

Further, supportive oncology services stand to improve patients’ quality of life and the quality of their care, frequently leading to reduced costs.

HemOnc Today spoke with physicians and leaders within the Supportive Oncology Collaborative about how the initiative works across multiple specialties to support patients throughout active treatment and survivorship periods, data so far that suggest these services can improve patients’ quality of life and outcomes, and whether such an effort can improve the overall quality of care delivered within health systems.

Making an impact

A 2013 Institute of Medicine report recommended that supportive care begin at the time of a patient’s cancer diagnosis to address stressors outside of direct treatment issues, such as pain, fatigue, spiritual needs, nutrition and finances.

“Every physician, nurse and staff member who works with [patients with cancer] is really focused on supporting the patient but tends to focus on a specific part of treatment,” Christine Weldon, executive director of Center for Business Models in Healthcare, which facilitated the project through The Coleman Foundation, told HemOnc Today. “The reality is, there are many other things going on with these patients besides their direct treatment.”

Based on findings from that 2013 report, The Coleman Foundation sought to improve patient experiences. Collaborators of the project identified gaps that prevented the delivery of supportive oncology care services and formed care-delivery design teams — focused on distress, survivorship and palliative care — to address individual patient needs.

The teams created solutions for closing these gaps, which they tested at six clinical sites: two safety-net hospitals, three academic hospitals and one public hospital. The solutions included a screening tool to identify psychological, social, physical, pain and practical concerns among patients; care delivery processes and provider training in supportive oncology delivery.

“The group I work with [at Northwestern] has done quite a bit of work in implementing brief measures to capture stress in oncology patients,” Frank Penedo, PhD, director of survivorship and of the Cancer Survivorship Institute at Robert H. Lurie Comprehensive Cancer Center of Northwestern University at Northwestern Memorial Hospital, who was involved in the first cycle of the collaborative implementation, told HemOnc Today. “We have a pretty robust group of clinicians and scientists who do survivorship care for cancer survivors so, with my leadership, we were tasked with overseeing the foundation’s efforts.”

Lo and colleagues through the collaborative focused on the palliative care aspect of improvement during the first cycle.

“We discussed best practices, developed a comprehensive screening tool for distress and created a reference document to help providers determine next steps,” Lo said.

Although her institution was not an implementation site in cycle 1, Loyola is now an improvement site for cycle 2, which is ongoing.

Pam Khosla, MD, chief of the section of hematology oncology at Mount Sinai Hospital in Chicago, and colleagues at her institution have been involved with the collaborative after a long-standing partnership with The Coleman Foundation.

“For more than 10 years we have partnered with The Coleman Foundation in overall support of the oncology division [at Mount Sinai Hospital],” Khosla told HemOnc Today. “They have been providing funding for supportive oncology care and we are now in the second phase of the collaborative, which will be finishing up in May.”

Patients undergo screening at diagnosis and treatment milestones and, based on the results, providers can refer patients to supportive care teams that include dieticians, chaplains, psychologists, nurse navigators and oncology social workers.

“We saw a need for wrapping together these other supportive care services to go across a person’s care, not just be a point-in-time activity,” Weldon said.

Improving a patient’s quality of life has become a relatively newer focus of the oncology community, Khosla said.

“We’ve paid some attention to it over the years, but there has been an increasing realization that patients can’t go through treatment properly if they don’t have the supportive care that improves their quality of life,” Khosla said. “Patients and families are expecting and hoping for a better quality of life, not just tumor shrinkage, and we have to live up to their expectations.”

Patient benefits

Approximately 80% of patients with cancer suffer from emotional distress at some point during their care, according to Weldon. That distress can be a catalyst for additional issues.

“There are so many different things patients need to be doing — organize transportation to get to appointments, manage copays, and address issues accessing food,” Weldon said. “Part of the design of the collaborative was to pilot a more standard approach to identify patient’s different needs, then share the results with the rest of the participating sites.”

Distress can manifest broadly across different patients. The collaborative found through networking with clinicians that distress was not measured uniformly at various sites.

“We found one site was screening just for depression and anxiety, which does meet commission standards, whereas other sites were conducting a bit more thorough screening,” Weldon said. “So, we used the current standard as a jumping off point to do a full screening of all patients’ supportive care needs.”

Members of the collaborative developed a patient-centric screening tool using the National Comprehensive Cancer Network Distress Problem List, Institute of Medicine report and Commission on Cancer standards. In addition to screening for depression and anxiety, it also screened for other stressors, such as nutrition, physical effects, pain, fatigue, finances and spirituality.

“Taking care of patients’ distress is most important,” Lo said. “The screening tool looks at emotional distress — anxiety and depression

— in addition to practical concerns, so we can then refer them to support groups, community support centers, social workers or a psychologist.”

The new tool has enabled patients to voice concerns that providers do not necessarily recognize or discuss during a visit.

“In one instance, I had a patient undergoing chemotherapy, so we talked about how we could improve her nausea,” Lo said. “Usually patients who undergo chemotherapy have physical complaints but, when I looked at her screening, she checked off she needed help paying for food and housing. I was shocked by this because she and her husband worked and had a large support system. I wouldn’t have thought to even ask that question if it wasn’t on the tool.”

Khosla said every need by a patient unrelated to treatment previously had been automatically deemed a social issue.

“We realized that overall, our patients weren’t happy. But, with the screening tool, we are asking new questions,” Khosla said.

At Mount Sinai Hospital, patients undergo distress and supportive needs screening at baseline, 3 months, 6 months and at pivotal points in care.

“A whole team of nurses, the supportive oncology coordinator and the social worker all come together under one clinic,” Khosla said. “With a visionary CEO at Mount Sinai Hospital, Karen Teitelbaum, supporting the cancer program it portrays multidisciplinary care where it is needed the most — supportive oncology clinic at a safety-net hospital. Our oncology pharmacist, Prachi Shah, PharmD, BCPS, also meets with every new patient in this clinic to go over treatment-related side effects.

“Patients are much more engaged with the team,” Khosla added. “I’ve heard from patients who didn’t think they would even consider chemotherapy telling me that they don’t know why they delayed their diagnosis in the first place, not knowing it was such a hand-holding experience during their journey.”

An abstract presented by Khosla and colleagues at Palliative and Supportive Care in Oncology Symposium showed the screening tool revealed other supportive oncology concerns in addition to anxiety and depression.

Overall, 28% of 2,805 patients screened also had sleep concerns, 21% had dry mouth, 19% had concerns about other family members, and 18% wanted help communicating wishes for treatment, among other concerns.

“Our results support the use of a comprehensive tool capturing a spectrum of each patients’ unique concerns,” the researchers wrote. “This may enable earlier interventions and personalized delivery of supportive care.”

Patients at Northwestern Hospital have benefited from the screening tool, particularly because it is integrated with the hospital’s electronic medical records platform, according to Penedo.

“Resources aren’t equal across all hospitals and clinics, but some hospitals and clinics have better infrastructure for research which allows them to do more systemic and EMR-embedded distress screening,” Penedo said.

Patients use a portal for screening, allowing clinicians to respond before the patient’s next visit.

“We know patients are better at reporting their own symptoms,” Penedo said. “Because these new measures of the screening are now available, we can do a pretty good job of capturing symptoms that interfere with quality of life in a timely manner.”

Still, patients treated at safety-net hospitals, or smaller hospitals and clinics, also stand to benefit from this new screening tool.

“It is unfortunate that policies right now do not favor providing this kind of comprehensive care in a community setting where it’s needed the most, especially in a safety-net setting,” Khosla said. “These are the patients who get the most out of this kind of program, because there is the least amount of funding for something like this,” she said, adding that The Coleman Foundation funding has helped bridged the gap for patients.

“State funding has dwindled over the last 2 or 3 years, so hospitals like Mount Sinai have faced major challenges, because we have to figure out how to make a program like this sustainable,” Khosla said.

Improving care delivery

In addition to numerous patient benefits, the tools and initiatives developed through the collaborative have positively impacted institutions and hospitals in the Chicago area.

“All these sites want to provide the best care possible, but there are always so many things going on and always more areas to improve, so [supportive care] doesn’t always get a level of focus,” Weldon said. “Having this funding from The Coleman Foundation has given professionals some bandwidth to be able to actually work on these supportive care processes internally and make improvements.”

Another benefit is maintaining accreditation. The Institute of Medicine and Commission on Cancer (CoC) recommends systematic delivery of supportive oncology and survivorship care to all patients throughout the continuum of care.

“Cancer centers have to be accredited by the CoC,” Penedo said. “Part of the accreditation is they have a system in place to provide some of these services and distress screenings.”

Weldon said the CoC has acknow-ledged each of the sites involved in the collaboration for improvements at their institutions.

“All of the sites have had inspections and the CoC site evaluators have been very pleased,” Weldon said. “Each site was visited while the project was ongoing, and each has done well on the standards put forth due to their efforts at improving quality in cancer care.”

A study by Gerhart and colleagues presented at Palliative and Supportive Care in Oncology Symposium showed significant improvement in seven of eight quality metrics at the six implementation centers. Researchers compared charts from these centers from 2014 diagnoses, before the implementation, with data from 2015, after the initial implementation period.

From 2014 to 2015, a significantly greater proportion of patients received a prognosis timeframe within 30 days of diagnosis (24% vs. 35%) and had a documented health care agent or a validated power of attorney within 90 days of diagnosis (5% vs. 11%; P < .0001 for both).

Further, a greater proportion of patients with stage IV disease had a documented advanced directive within 90 days of diagnosis (1% vs. 27%) and underwent screening for supportive care needs within 30 days of diagnosis (15% vs. 43%; P < .0001 for both). A greater proportion of patients with stage I to stage III disease received a treatment summary and survivor care plan within 180 days of treatment (2% vs. 7%; P = .0009).

A greater proportion of patients with stage I to stage III disease (38% vs. 60%) and stage IV disease (6% vs. 15%; P < .0001 for both) underwent supportive oncology needs screening within 30 days of diagnosis.

The collaborative also offers no-cost CME online courses specific to supportive oncology care through National Comprehensive Cancer Network’s education portal.

“One of the struggles sites have is that everyone on the team has the same understanding of patients’ needs around stress, survivorship, physical effects, pain, palliation and practical concerns,” Weldon said. “These courses have been really helpful in offering education that clinicians can apply to their practice.”

It is important for providers at all levels of care to recognize the need for supportive oncology, Lo said.

“The collaborative has done a wonderful job at bringing together a diverse group of investigators, clinicians and stakeholders,” Penedo said. “This process of care is now benefiting patients as it’s been implemented across multiple sites.” – by Melinda Stevens

References:

National Academy of Medicine. Delivering high-quality cancer care: Charting a new course for a system in crisis. Available at: nationalacademies.org/hmd/Reports/2013/Delivering-High-Quality-Cancer-Care-Charting-a-New-Course-for-a-System-in-Crisis.aspx. Accessed on Jan. 26, 2018.

The following were presented at: Palliative and Supportive Care in Oncology Symposium; Oct. 27-28, 2017; San Diego.

Gerhart J, et al. Abstract 150.

Khosla P, et al. Abstract 61.

Additional resources:

NCCN Continuing Education. Supportive oncology care CME. Available at: education.nccn.org/supportive-oncology-care.

Supportive Oncology Collaborative screening tool can be requested at: www.supportiveoncologycollaborative.org.

For more information:

Pam Khosla, MD, can be reached at Sinai Health System, 1500 South Fairfield Ave., Chicago, IL 60608; email: pam.khosla@sinai.org.

Shelly Lo, MD, can be reached at Loyola University Medical Center, 2160 S. First Ave., Maywood, IL 60153; email: shlo@lumc.edu.

Frank J. Penedo, PhD, can be reached at Northwestern University Feinberg School of Medicine, 633 N. St. Clair St., Suite 19-000, Chicago, IL 60611; email: frank.penedo@northwestern.edu.

Christine Weldon, can be reached at weldon@centerforbusinessmodels.com.

Disclosures: Weldon reports a consultant/advisory role with Genentech and employment with Center for Business Models in Healthcare. Khosla, Lo and Penedo report no relevant financial disclosures.