Cancer Survivorship Is Not ‘One Size Fits All’


Whether it be physical, psychosocial or financial, the lasting effects of cancer and its treatment can be overwhelming. One expert explains how a personalized survivorship care plan can tackle it altogether.

Whether an individual is currently receiving cancer treatment or well into remission, it’s important that they think about managing their survivorship and the long-term effects treatment, one expert says.

With the growing cancer population, there is what’s been coined the “silver tsunami effect,” meaning that two-thirds of patients living with cancer are over the age of 65, and therefore tend to have many more comorbidities and other types of health conditions.

“But it also means that we have a lot of patients who we need to think about, how do we really co-manage them, maybe with other specialists, with primary care,” said Jennifer R. Klemp, professor of medicine in the Division of Medical Oncology and director of cancer survivorship at the University of Kansas Cancer Center, during a presentation at the 12th Annual Joining FORCEs Against Hereditary Cancer Conference. “And when you look at the silver tsunami, the two populations who really have the greatest amount of risk are the youngest and the oldest.”

The total number of cancer survivors has steeply increased in recent years, Klemp explained. Which means that many patients are living longer both with and through their disease, making it important to manage their survivorship care.

Every patient’s survivorship journey is different: some may never leave the treatment phase, others will enter long-term survivorship and continuity of care and others may leave a treatment phase and then return again later on when their cancer is no longer in remission.

“Some of the same exact things we needed to offer to them during the treatment phase are needed in the continuity of care phase,” Klemp said. “We think about navigation, we think about genetics, we think about cardiotoxicity and our heart health. So really putting this into perspective is important.”

Late Effects of Cancer Treatment

As cancer treatment types vary from patient to patient as well as cancer type, the late or long-term comorbid conditions that they may develop as a result of treatment differ. This makes it important for their health care team to treat each patient’s survivorship care differently.

Providers and patients should work to understand the contributing risk factors, potential long-term and late effects. Long-term effects are identified during diagnosis and treatment – and may persist after – while late effects are identified once acute treatment has been completed, and these may continue for months or years down the line.

“What do we do about that risk? And do our other members of our care team, or primary care or other specialists know about these risks and how to manage those risks?” Klemp asked. “So putting all this into perspective, what I want to show you by this sort of whole person approach is that we really need to be thinking kind of from head to toe.”

The Steps to Risk Management of Long-term and Late Effects of Cancer

Understanding how to address the long-term and late effects of cancer on an individual can start with baseline testing, Klemp explained. This means doing some onboarding, blood tests and needs assessments to give a comprehensive understanding of what’s going on with a patient.

Patients then need to be educated on the risks and implications of ongoing care, in the form of educational videos and handouts or by getting lifestyle tips from their clinicians.

“And then we need to do an ongoing risk assessment,” Klemp said. “So just because we took in a baseline to see what the patient was when they walked in the door, how are we updating that? How are we making sure we keep tabs on that?”

Finally, it’s important that patients are offered interventions that could work for them. This could mean engaging with other survivors and receiving a referral to specialists or support groups, which Klemp said tend to collaborate with supportive care organizations to do.

The National Comprehensive Cancer Network (NCCN) has a list of guidelines on survivorship that can help lead the management of survivors, Klemp explained. However, it can be hard to achieve all of that when the issue of payment gets in the way, because addressing the concerns can be costly.

“I like to put everything into risk buckets,” Klemp said. “We want to risk stratify survivorship care too. Not everybody needs the same level of care and support. Not everybody has the same risk factors.”

How Does Risk Stratification of Survivorship Care Work?

The first thing you want to understand, Klemp said, is the level of risk associated with each cancer type. Then you can place patients into different categories based on their level of risks – high, moderate and low.

“You could think about how that's helpful, because if someone's at average risk for developing cardiovascular disease, but someone else is at high risk, those are going to be two separate pathways and how we manage the patient,” Klemp said. “And it's really important, because once again, we don't live in a one-size-fits-all health care environment. And we don't and shouldn't give every patient the same level of care.”

To address each patient’s different needs based on their level of risk, specific tools can be utilized to help them navigate their survivorship journey. These can be instructions, care plans, a directory of services for patients to find resources, referral pathways to the appropriate counselor or social worker a patient may need, educational information for providers/patients and technology platforms to empower these strategies.

Risk assessment should be done at every step of the patient’s journey, Klemp urged. This means re-evaluating after diagnosis, primary treatment, follow-up care after treatment, survivorship care, long-term follow-up care and end-of-life care.

“The goals to risk assessment mean we need to assess the information, we need to look at the bigger picture, we need to do shared decision making and figure out our goals, and then we need to kind of keep tabs on it and keep this risk assessment going,” Klemp said. “Not just at one time point, but across the cancer journey.”

The Patient Plays a Role

Patients can help their own survivorship journey by directly reporting their health status through patient-reported outcomes (PROs). Asking questions about their symptoms, medication management, quality of care and more allows for patient and caregiver engagement as well as accurate timely assessment of the effects they’re experiencing.

“But the hard part is that you don't know the goal of the question,” Klemp said. “And we just throw out 10 questions to you and you're supposed to check the right box or give us a scale of one to five or zero to five. You need context. So the biggest challenge, I think, with using PROs, is that we absolutely have to provide the context that goes along with the collection of your information.”

PROs are another aspect that can guide what elements are included in a patient’s individual survivorship plan.

Essential Parts of a Survivorship Plan

Klemp explained that the components that need to be considered when creating a survivorship plan are prevention strategies against new and recurrent cancers and their late effects, surveillance for cancer activity, assessment of late psychosocial and physical effects, intervention for consequences of cancer and treatment and coordination of care between primary care providers and specialists to ensure all health needs are met.

Every survivorship visit should assess a patient’s current disease status, functional status, medication use and types, comorbidities, treatment history, personal family history, psychosocial issues, lifestyle factors that influence weight and health and disease-specific recommendations.

“We need to have your team,” Klemp said. “And that team needs to be role-delineated. Who's doing what on the team? The cancer care team kind of is the quarterback, they're kind of running the show. Your specialists are sort of like your wide receivers, so you need to have them in place. Your primary care, they’re kind of like the coach on the side – they’re not necessarily in every play, but they’re really needing to be a big part of your ongoing care.”

It’s also important that survivors engage in their own care, since they are the primary focus of the whole team working together.

“We need to know that you're participating in cancer screenings, you're going to your appointments, you're adhering to the medications, or the ongoing treatment that you've been recommended,” Klemp said. “Do you need initial or updated genetic testing? You need to make sure that if we don’t ask, you bring it up.”

Financial Toxicity During Survivorship

Since that patients are living longer, survivorship phases of care have become the most expensive, Klemp explained. That’s why it’s important to be connected with the proper resources, whether it be online or through a financial counselor.

“Make sure that you're bringing these issues up, because certain things maybe are a little uncomfortable for us to talk about. And sometimes financial issues can be one of those. But don't hesitate. This is a very important issue, and really does impact patient outcomes.”

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