National Comprehensive Cancer Network summit explores cancer survivors’ key concerns

Robert Carlson
Christopher Lieu

The National Comprehensive Cancer Network Patient Advocacy Summit yielded new insights into some of the most important issues that cancer survivors and their caretakers face.

Clinicians, policymakers, pharmaceutical and biotech industry representatives, cancer survivors and patient advocates convened in Washington in December to discuss several key concerns.

These included survivorship care plans, palliative care, pain management, chronic side effects of treatment, financial toxicity, novel survivorship outcomes, and the desire for treatments that leave minimal residual disease.

“Living through and beyond a cancer diagnosis can have a profound effect on people’s physical, psychological, social, economic and spiritual well-being,” Robert Carlson, MD, CEO of the National Comprehensive Cancer Network (NCCN) and attending physician in the department of hematology-oncology at Fox Chase Cancer Center of Temple Health, said in a press release.

“Providing the best care for these individuals — especially those diagnosed at a very young age — extends well beyond the initial phase of treatment.

“The good news is that patients are living longer after diagnosis,” Carlson added. “That means we need to make sure we are prepared for any long-term concerns.”

James McCanney

HemOnc Today spoke with Carlson, along with two other experts — Christopher Lieu, MD, assistant professor in the division of medical oncology at the University of Colorado School of Medicine and member of the NCCN Clinical Practice Guidelines in Oncology panel on neuroendocrine tumors, and James McCanney, JD, policy and advocacy fellow at NCCN — about the summit, how cancer survivorship should guide the decisions clinicians make during treatment, and best practices for clinicians who monitor patients for late effects after treatment.

 

Question: What key themes did the summit address?

Carlson: One of the things that impressed me most during the summit was the diversity of need and the diversity of the surviving patient population, and how their needs differ by age and disease site. They differ greatly from patient to patient. There are also needs that evolve throughout time depending upon where the survivor is in their journey.

 

Lieu: Patients, health care providers and other stakeholders discussed issues surrounding survivorship in cancer care. Topics that were discussed included the increasing importance of survivorship in cancer care, the impact of cancer on patients and their caregivers, methods to collect data regarding delivery of survivorship care plans and patient-reported outcome measurements, and how to incentivize stakeholders to increase survivorship care and planning.

 

McCanney: Some of the themes discussed were the lack of ownership of posttreatment patient care between primary care clinicians and oncologists, and this is a problem for both the patient and the provider. We had a number of panelists who were patients themselves at one point, and they addressed how patients are scared when their care shifts from an oncologist back to a primary care physician. We talked a lot about both sides taking ownership of that process. Patients need to take charge of their own care and should advocate for themselves by getting their doctors together so that they can sort out who will be doing what in terms of care. We also explored the theme of psychosocial issues among cancer survivors. We discussed PTSD and some of the issues that childhood cancer survivors go through, including sexual issues and developmental issues. Another key theme was patient education. Patients need to take charge and use survivorship care plans and understand the importance of these plans to guide their posttreatment life.

 

Q: What practical strategies and advice emerged from the summit?

Carlson: With my ‘physician hat’ on, it is really hard to come away from this summit with pragmatic practical outcomes, in part because the diversity of need was so great. The research and data sets we have to respond to those needs are quite immature. I found it difficult to identify what I would implement differently in my own clinic to respond to these survivorship needs. The need for research and creative solutions to address some of these needs is desperate.

 

Lieu: Survivorship is something that should be considered as part of the continuum of care for all patients diagnosed with cancer. Health care providers need to continue to emphasize the importance of addressing survivorship issues for patients, including state of health, psychological distress and financial toxicity, and behavioral and sexual issues. Research funding for cancer survivorship needs to continue and increase to measure the impact of survivorship care on health and quality-of-life outcomes.

 

McCanney: A take-home strategy that was talked about a great deal was patients taking charge of their own cancer journey. Also, providers should start offering distress screening and social workers for survivors to help develop their survivorship care plan. Improvements are needed for patient and provider communication, as well as data collection. Patients need to ‘own their data,’ and this is something that they can do through improved patient data collection methods.

Q: What should frontline clinicians be doing and thinking about regarding survivorship? How should it guide the decisions they make during treatment?

Carlson: This depends a great deal on the disease type and what the outcome expectations are. We can talk about the challenges of survivorship today because the effectiveness of treatment is so much better for select cancer types. We should look at the long-term outcomes for cancer types with a high probability of cure or survival or transition into a chronic disease, and determine how the therapies will affect the patients’ quality of life in the future. We need to do a good job of trying to balance the need for trying to cure a disease with the impact that the cure will have downstream for the individual patient.

 

Lieu: Processes need to be in place to ensure that survivorship issues are being addressed, either in the clinic or even in a separate survivorship clinic. Quality of life should be addressed, even during treatment, to ensure that the patient’s goals are being met with regard to the risks and benefits of the treatment a patient may receive for his or her cancer.

 

Q: What should be front-of-mind after treatment when clinicians are monitoring patients for late effects?

Carlson: The patient experience should be front of mind and how late treatment effects are impacting patient experience. There are some patients who experience significant toxicities from treatment, but they appear to not be bothered by it. There are other patients who have limited long-term effects and are greatly bothered by it. This goes back to the diversity of issues and the individual response that patients have to those issues. The most important response is to try to listen to the individual patient and try to understand what symptom they are experiencing, as well how it is impacting their quality of life.

 

Lieu: It is important to take the time to simply ask how the patient is doing from several standpoints. There is so much focus on the state of the cancer, such as whether the cancer has recurred, that much of the focus turns away from other important issues, including how a person is doing emotionally, physically and financially. When these issues arise, it is critical for patients to have access to a team — such as a clinical psychologist, social worker, case manager or nutritionist — who can help them with any of the issues they are dealing with.

 

Q: Is there anything else that you would like to mention?

Carlson: A lot of survivorship care issues extend to caregivers — the people who have to help the individual patient compensate for the long-term effects they have. This was such a prominent theme discussed at the summit, and it is likely that our next summit will focus on the caregiver to see what we can do to assist them. I often hear that it is more difficult being a caregiver because they cannot take the burden away from a loved one, even though they want to. Instead, they are a bystander to a lot of their challenges and difficulties. – by Jennifer Southall

 

On the Web

NCCN will host three policy summits this year in Washington, as well as an emerging issues roundtable on value-based health care models during the NCCN 23rd Annual Conference, which will be held March 22-24 in Orlando. For more information, go to www.nccn.org/policy.

 

For more information:

Robert Carlson, MD, can be reached at National Comprehensive Cancer Network, 275 Commerce Drive, Suite 300, Fort Washington, PA 19034; or Fox Chase Cancer Center of Temple Health, Main Campus, 333 Cottman Ave., Philadelphia, PA 19111.

Christopher Lieu, MD, can be reached at University of Colorado School of Medicine, 1201 Larimer St., Denver, CO 80204; email: christopher.lieu@ucdenver.edu.

James McCanney, JD, can be reached at National Comprehensive Cancer Network, 275 Commerce Drive, Suite 300, Fort Washington, PA 19034.

 

Disclosures: Carlson, Lieu and McCanney report no relevant financial disclosures.

Robert Carlson
Christopher Lieu

The National Comprehensive Cancer Network Patient Advocacy Summit yielded new insights into some of the most important issues that cancer survivors and their caretakers face.

Clinicians, policymakers, pharmaceutical and biotech industry representatives, cancer survivors and patient advocates convened in Washington in December to discuss several key concerns.

These included survivorship care plans, palliative care, pain management, chronic side effects of treatment, financial toxicity, novel survivorship outcomes, and the desire for treatments that leave minimal residual disease.

“Living through and beyond a cancer diagnosis can have a profound effect on people’s physical, psychological, social, economic and spiritual well-being,” Robert Carlson, MD, CEO of the National Comprehensive Cancer Network (NCCN) and attending physician in the department of hematology-oncology at Fox Chase Cancer Center of Temple Health, said in a press release.

“Providing the best care for these individuals — especially those diagnosed at a very young age — extends well beyond the initial phase of treatment.

“The good news is that patients are living longer after diagnosis,” Carlson added. “That means we need to make sure we are prepared for any long-term concerns.”

James McCanney

HemOnc Today spoke with Carlson, along with two other experts — Christopher Lieu, MD, assistant professor in the division of medical oncology at the University of Colorado School of Medicine and member of the NCCN Clinical Practice Guidelines in Oncology panel on neuroendocrine tumors, and James McCanney, JD, policy and advocacy fellow at NCCN — about the summit, how cancer survivorship should guide the decisions clinicians make during treatment, and best practices for clinicians who monitor patients for late effects after treatment.

 

Question: What key themes did the summit address?

Carlson: One of the things that impressed me most during the summit was the diversity of need and the diversity of the surviving patient population, and how their needs differ by age and disease site. They differ greatly from patient to patient. There are also needs that evolve throughout time depending upon where the survivor is in their journey.

 

Lieu: Patients, health care providers and other stakeholders discussed issues surrounding survivorship in cancer care. Topics that were discussed included the increasing importance of survivorship in cancer care, the impact of cancer on patients and their caregivers, methods to collect data regarding delivery of survivorship care plans and patient-reported outcome measurements, and how to incentivize stakeholders to increase survivorship care and planning.

 

McCanney: Some of the themes discussed were the lack of ownership of posttreatment patient care between primary care clinicians and oncologists, and this is a problem for both the patient and the provider. We had a number of panelists who were patients themselves at one point, and they addressed how patients are scared when their care shifts from an oncologist back to a primary care physician. We talked a lot about both sides taking ownership of that process. Patients need to take charge of their own care and should advocate for themselves by getting their doctors together so that they can sort out who will be doing what in terms of care. We also explored the theme of psychosocial issues among cancer survivors. We discussed PTSD and some of the issues that childhood cancer survivors go through, including sexual issues and developmental issues. Another key theme was patient education. Patients need to take charge and use survivorship care plans and understand the importance of these plans to guide their posttreatment life.

 

Q: What practical strategies and advice emerged from the summit?

Carlson: With my ‘physician hat’ on, it is really hard to come away from this summit with pragmatic practical outcomes, in part because the diversity of need was so great. The research and data sets we have to respond to those needs are quite immature. I found it difficult to identify what I would implement differently in my own clinic to respond to these survivorship needs. The need for research and creative solutions to address some of these needs is desperate.

 

Lieu: Survivorship is something that should be considered as part of the continuum of care for all patients diagnosed with cancer. Health care providers need to continue to emphasize the importance of addressing survivorship issues for patients, including state of health, psychological distress and financial toxicity, and behavioral and sexual issues. Research funding for cancer survivorship needs to continue and increase to measure the impact of survivorship care on health and quality-of-life outcomes.

 

McCanney: A take-home strategy that was talked about a great deal was patients taking charge of their own cancer journey. Also, providers should start offering distress screening and social workers for survivors to help develop their survivorship care plan. Improvements are needed for patient and provider communication, as well as data collection. Patients need to ‘own their data,’ and this is something that they can do through improved patient data collection methods.

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Q: What should frontline clinicians be doing and thinking about regarding survivorship? How should it guide the decisions they make during treatment?

Carlson: This depends a great deal on the disease type and what the outcome expectations are. We can talk about the challenges of survivorship today because the effectiveness of treatment is so much better for select cancer types. We should look at the long-term outcomes for cancer types with a high probability of cure or survival or transition into a chronic disease, and determine how the therapies will affect the patients’ quality of life in the future. We need to do a good job of trying to balance the need for trying to cure a disease with the impact that the cure will have downstream for the individual patient.

 

Lieu: Processes need to be in place to ensure that survivorship issues are being addressed, either in the clinic or even in a separate survivorship clinic. Quality of life should be addressed, even during treatment, to ensure that the patient’s goals are being met with regard to the risks and benefits of the treatment a patient may receive for his or her cancer.

 

Q: What should be front-of-mind after treatment when clinicians are monitoring patients for late effects?

Carlson: The patient experience should be front of mind and how late treatment effects are impacting patient experience. There are some patients who experience significant toxicities from treatment, but they appear to not be bothered by it. There are other patients who have limited long-term effects and are greatly bothered by it. This goes back to the diversity of issues and the individual response that patients have to those issues. The most important response is to try to listen to the individual patient and try to understand what symptom they are experiencing, as well how it is impacting their quality of life.

 

Lieu: It is important to take the time to simply ask how the patient is doing from several standpoints. There is so much focus on the state of the cancer, such as whether the cancer has recurred, that much of the focus turns away from other important issues, including how a person is doing emotionally, physically and financially. When these issues arise, it is critical for patients to have access to a team — such as a clinical psychologist, social worker, case manager or nutritionist — who can help them with any of the issues they are dealing with.

 

Q: Is there anything else that you would like to mention?

Carlson: A lot of survivorship care issues extend to caregivers — the people who have to help the individual patient compensate for the long-term effects they have. This was such a prominent theme discussed at the summit, and it is likely that our next summit will focus on the caregiver to see what we can do to assist them. I often hear that it is more difficult being a caregiver because they cannot take the burden away from a loved one, even though they want to. Instead, they are a bystander to a lot of their challenges and difficulties. – by Jennifer Southall

 

On the Web

NCCN will host three policy summits this year in Washington, as well as an emerging issues roundtable on value-based health care models during the NCCN 23rd Annual Conference, which will be held March 22-24 in Orlando. For more information, go to www.nccn.org/policy.

 

For more information:

Robert Carlson, MD, can be reached at National Comprehensive Cancer Network, 275 Commerce Drive, Suite 300, Fort Washington, PA 19034; or Fox Chase Cancer Center of Temple Health, Main Campus, 333 Cottman Ave., Philadelphia, PA 19111.

Christopher Lieu, MD, can be reached at University of Colorado School of Medicine, 1201 Larimer St., Denver, CO 80204; email: christopher.lieu@ucdenver.edu.

James McCanney, JD, can be reached at National Comprehensive Cancer Network, 275 Commerce Drive, Suite 300, Fort Washington, PA 19034.

 

Disclosures: Carlson, Lieu and McCanney report no relevant financial disclosures.