Support Made Smarter: Assessing the Unique Needs of Patients With Cancer

Puneeth Indurlal, MD, MS, Senior Director, Care Transformation and Analytics, US Oncology Network 

Hello, everyone. I'm Dr. Puneeth Indurlal. I'm the Senior Director for Care Transformation and Analytics with the US Oncology Network. I'm based out of Chicago and I've been with the US Oncology network for 10 years now after starting my career journey with one of their practices. About 4 years ago made the transition to join the network to support over 30 national practices.  

Could you share some examples of health-related social needs and why they may especially impact outcomes and experiences for patients with cancer?  

Absolutely. Cancer is obviously a dreadful disease. Everyone knows that. And cancer doesn't happen in isolation. It generally happens to patients in the middle of their lives and upends their lives for the most part. Cancer ads to any distressing experiences patients may be facing during their normal lives. And social needs, or social issues, are definitely one of the components of that distress for cancer patients. There are a lot of research articles that have shown that distress and health-related social needs can significantly impact patient outcomes by influencing after care, appropriate treatment adherence, and also patients' experiences throughout their cancer journey. 

It's important to evaluate, assess, and address health-related social needs so they don't end up affecting cancer patients' treatment journeys and the outcomes that we would hope cancer patients receive as a result of their treatment.  

What are the most common types of distress reported by cancer patients during the study period? 

We used the National Comprehensive Cancer Network's (NCCN) Distress Thermometer as an assessment tool within the US Oncology Network. And in our assessment, we conducted close to 270 000 screenings. Of those screenings, the most common distressing symptoms that patients experienced were physical symptoms, like pain, fatigue, poor sleep, etc. However, we did see varyingly high numbers of emotional problems that patients were facing.  

We also had patients having practical issues with their finances, insurance coverage, etc. They also had social considerations and concerns, like having appropriate relationships with their family members and managing their own relationships such as being a caregiver while also receiving care within their household, etc. There were a wide range of symptoms reported on these screenings that were causing distress to patients.  

How do you believe that using the NCCNDT and the EHR helped oncology practices in addressing the identified social needs? 

The NCCN distress thermometer is a validated questionnaire to assess for distress. It offers a lot of benefits. It's a very simple form that patients could complete themselves or it could be administered by a health care professional within the physician's office or in the health care setting for the most part. It provides a standardized assessment approach to capturing some of these distress elements. 

By incorporating the NCCN distress thermometer into the medical record, it provides multiple benefits. One, it could be used within offices to record and use data on the back end to analyze and assess patterns and trends of distress that cancer patients face during different parts of their treatment journey. We could also understand the correlation between what are the problems that are causing a higher degree of distress and how many problems do patients face, etc. 

We had a lot of insight into the themes, patterns, and approaches that patients were taking with navigating these distressing symptoms. We were able to capture and assess all of that in the data.  The other benefits that an electronic integration offers are the ability for the patient to provide that information to us asynchronously, not on the date of the visit, but in the form of patient reported outcomes. It also allows us to better coordinate care for that patient by involving the right entities within the health care ecosystem to provide support. It could be a social worker, engaging a chaplain, helping the patient arrange transportation, or making sure that the patient is engaging with a pain management specialist for their pain care. It could even be coordinating with a psychiatrist to support with their emotional needs.  

There are also other benefits like having the ability to build in prompts and alerts for the health care provider to know when to act or when to intervene on any given distress symptoms. There's a lot of benefits to having an electronic version of an assessment tool like the NCCN distress thermometer to capture some of these distressing symptoms from patients.  

Were there any unexpected findings or trends that emerged from the data?  

One of the things we noted in our evaluation of multiple practices was the considerable amount of differences between how each practice implemented the distress screening. At times, having them all be judged on the same approach may not be the best thing to do. We did see a lot of variability in the types of distress and the scores that patients were reporting and also documentation trends were quite different. However, I guess that's expected when you're evaluating real world data for the most part. But at the same time, we also want to see whether that is a function of any geographic differences in how patients face distress within their cancer journeys. Does location of where the patient lives or works or comes to the clinic have a bearing on the types of distress that they're reporting? That's something we are continuing to evaluate.  

In what ways do you think the results of this study could help inform the development of support services and community resources specifically for cancer patients to address health-related social needs? 

Knowing that health-related social needs are common within cancer patients' treatment journeys is going to be very important to design appropriate programs or have appropriate resources available. The top symptoms that patients were facing, whether physical, emotional, or practical problems, its important to have appropriate systems and resources in place.  

For instance, patients reporting transportation problems could be linked with community-based resources that offer transportation to and from care. A lot of insurance plans do have the benefit of providing patients with transportation assistance. Outside of looking at transportation, we could also try and link up what physical manifestations of their cancer have a bearing on the treatment journey and whether or not they are addressed and what sort of social problems those bring about. In Maslow's hierarchy of needs, being pain free is number one. And if we are not able to address that, what other problems may that aggravate? Does that contribute to increased depression? Does that depression then cascade down to dysfunctional relationships with family members? Does that contribute to more physical symptoms like lack of sleep? Does it cause any practical considerations? If a patient is experiencing a lot of pain and fatigue, are they not able to go back to work? If they're not able to go back to work, what does that mean for a patient who needs to provide for themselves and their family while they continue to receive treatment because a lot of patients to get their health care coverage from their workplace. 

There's a lot of considerations and interactions. Knowing those interactions and considerations will help shape some of those social support programs that will aid patients as they navigate their cancer journeys. It is important to have social workers in office or to have a good catalog of social support systems that are available. 

The US oncology network has a partnership with an entity called findhelp to help practices connect patients with social support systems. If a patient is concerned about the alopecia they’ll experience due to cancer, we can connect them up with a local resource that provides wigs. Or, are there resources available such as a community support group that the patient can interact with so they have a better outlook towards their cancer treatment journey? Or can we help them interact with people who have had cancer and come out on the other end successful? It can change the outlook that these patients have while they're navigating their illness. 

As I mentioned earlier, cancer happens in the midst of people's normal lives and makes life abnormal. The more we can walk with in their shoes and help them navigate some of these issues and distressing symptoms, it will improve outcomes and overall patient experiences. Hopefully, one day, we will have a system where care is provided holistically care all at once and patients can walk away with a positive care experience.