Enhancing Distress Screening, Management Across Cancer Care Delivery Settings

Insights From the 2022 ASCO Quality Care Symposium 

In her research, Nicole L Stout, DPT, CLT-LANA, FAPTA, affiliated with the West Virginia University Cancer Institute, focuses on improving cancer care delivery for survivors, which she says extends beyond the 4 walls of the cancer center, out into the rural communities in West Virginia.

Dr Stout spoke with Pharmacy Learning Network about her research into distress screening and management which was presented at the 2022 ASCO Quality Care Symposium.

What existing data led you and your coinvestigators to conduct this research?

As a part of our commission on cancer reviews, we looked at our rates of distress screening in our outpatient ambulatory cancer institute. We screen at baseline to understand where someone is when they begin cancer treatment, but the repeated screens help us identify the earliest changes in each patient which need to be managed with supportive care services.

We saw some deficits year over year in the rate of screening, not only in the rate of distress screens, but also in repeated screens. We were not accomplishing a high level of repeat screening. We found our distress screening rates were in the 86th percentile, but our repeat distress screens occurred at a rate of about 16%. We were missing a lot of unreported patient needs, and, of course, opportunities to manage them.  

We also found that even though we had patients who were reporting 6, 7, and 8 as their distress scores, they were refusing follow-up supportive services. We had almost a 60% refusal for supportive services in some months. Patients were telling us a story. Where and why was there a disconnect?

We started with our internal folks. We did some focus groups with our nurses, who are our navigators. The distress tool we were using was the NCCN Distress Thermometer. Nurses felt like they were not getting good context from the tool. For instance, the patient checks the box saying transportation was the problem. But is the problem that they do not have a car? Is it that they cannot afford to pay for gas? Is it that they do not know how to drive?

We dug a little into the patient side to understand, too. We found patients do not know what a social worker could offer them, for instance. There was a lack of context around what the needs of the patients were.

Given that background, we decided to change the way our distress tool was used in our electronic health records. We enhanced the distress tool, and we called it the EDT: the Enhanced Distress Tool. Instead of having a clickable box, we created pull down menus and, on those pull-down menus, we gave more context. When patients said transportation, nurses could click a specific problem in the pull-down menu to include a greater degree of context.

The second thing we did, which I think was helpful to our clinical pathways by taking some of the burden off our nurses, was create algorithms on the backend of the electronic health record. If a patient hit a distress score of 5 or more, depending on the category they selected, the algorithm would automatically generate a pool of support services. We created an opt-out model whereby after the high need was reported, the high distress score went to the appropriate group of professionals to review it and then follow up with the patient.

We changed the workflow, not just in the clinical space regarding how we measure and follow distress, but also in the technical infrastructure to better facilitate using the distress findings. That was the genesis of developing this quality improvement project, which we conducted over the course of 1 year.

Thank you. Please briefly describe your findings. Were any of the outcomes surprising?

The opt-in, opt-out model made a difference in the referral follow-ups. We found more patients were getting connected to support services. With the rehabilitation providers especially, we saw a huge increase in our physical and occupational therapist, spiritual counselor, and dietician utilization. We nearly eliminated the issue of patients declining follow-up services.

We also conducted anonymous surveys with our nurses to look at the acceptability of the tool as we revised it. We made it slightly more burdensome for the nurses, and they recognized that, but they said they felt like they could connect with their patients better, too.

In our surgical clinics, we also trained our medical assistants to use the distress tool. We had the highest completion rates among our medical assistants. In the survey, the medical assistants felt like the tool gave them more meaning in their position, and they felt like they could connect better with patients. The reception from health care professionals was good, and the outcomes and utilization improved over time.

The Commission on Cancer’s standards suggest distress screenings be repeated when there is a change in treatment status. We decided to just repeat the screen every 3 months with an alert to the provider and cancer clinic. We are also tracking volume to better understand how we may need to change our staffing models based on an increase in patient need.

We are also looking at risk stratification. Not everyone who says they have a physical problem in mobility needs an automatic consult to the physical therapist. Sometimes all it takes is a phone conversation. We are conducting coaching over telehealth visits and home exercise, and then making the determination if the patient needs a consult or referral. We are not just pushing patients to increase utilization for its own sake.

This helps tremendously in a rural setting. It has helped us be more efficient with the utilization of services for our patients so there is less of a burden.

How can this data be used in clinical practice?

I was invited to speak at the 2023 ASCO Annual Meeting this coming spring, and the title of my session is “Nuts and Bolts of Implementing Needs Assessment in Your Clinical Practice.” My hope is someone can take this process, think about moving it into their own clinical context with the appropriate assessments, and figure out how to create those triggers, change culture, and move toward better utilization.

We were taking in a lot of information about distress, but we were not utilizing it well enough to put patients on the right clinical pathway. By improving those processes, others can enhance the use of support services to help patients with their needs.

Do you and your coinvestigators intend to expand upon this research?

In 2023, our goal is to hit high numbers with repeat distress screenings. We are trying some different models for embedding our specialty care services in particular clinics. For example, we are embedding our occupational therapists into the brain tumor clinic because we see such a high need for that service in that clinic. Instead of sending an assessment trigger to the occupational therapist to review, we will have that person right there in the clinic to do an onsite, real-time consultation and start the patient on their care plan. We may increase efficiency by embedding our therapists and social workers into the clinics more. We expect this to help us be more proactive in identifying problems.

We are working on what we call the Proactive Bridge Program to implement an interdisciplinary approach at an early time point in the care trajectory. For example, our patient population with head and neck cancer can get a swallowing assessment, a rehabilitation assessment, and a nutrition assessment at baseline, and that group of providers can follow the patient going forward to identify needs and problems. We are trying to create more proactive care pathways, and the Proactive Bridge Program is a next step in this research.

Thank you. Is there anything else pertaining to your research and findings that you would like to add?

This is a great example of how a quality improvement project can catalyze real clinical improvement and change. I feel very strongly that we need to create a system of care where providers walk alongside the patient, assess needs in an ongoing fashion, and manage them proactively.

Regarding prospective surveillance, a project like this drew a lot of attention to the gap we had in care delivery. This will probably help us in the future by leading to better clinical care pathways through a supportive network starting at the beginning of care and following the patient all the way through, rather than waiting until there is a disability or they reach the end of care.

About Dr Stout
Nicole L Stout, DPT, CLT-LANA, FAPTA, is a research assistant professor in the School of Medicine, Department of Hematology/Oncology at West Virginia University Cancer Institute (WVUCI) and with the School of Public Health, Department of Health Policy, Management, and Leadership. She also serves as the Associate Director of the Cancer Survivorship Program. 

Dr Stout’s work focuses on implementation of survivorship supportive care services in cancer care delivery. She coordinates WVUCI’s survivorship agenda and supportive care infrastructure development between the cancer center and community. She has funded research studying the implementation of prospective, risk stratified functional assessment and symptom management strategies in cancer care delivery and studying community outreach and engagement strategies with rural primary care providers to enable implementation of cancer survivorship interventions.

Dr Stout is an internationally recognized expert and leader in the field of cancer rehabilitation and survivorship care and has given over 300 lectures nationally and internationally. She has authored or coauthored over 90 peer reviewed and invited publications, several book chapters, and the book 100 Questions and Answers about Lymphedema.

Dr Stout is the cochair of the Alliance Clinical Trials Network Rural Health Working Group, a steering committee member with the Appalachian Community Cancer Alliance, and serves as the research chair for the Appalachian Translational Research Network.