U.K. ahead of U.S. in cancer survivorship planning

BRUSSELS – Cancer survivorship planning in the United Kingdom is ahead of the United States and the rest of Europe with the recent rollout of a model care plan for cancer patients, along with a guide for conversations between cancer-care health care providers and patients at the time they start long-term follow-up surveillance.

A care plan guides patients as they segue from acute cancer treatment to longer-term health maintenance and follow-up. The plan can include a personalized record of treatment received, prognosis, recommended follow-up examinations, symptoms to be alert for, and other critical information when patients transition to life as a cancer survivor.

The U.K.’s National Health System (NHS) first released a hard-copy version of a model care plan for cancer patients along with a guide for conversations with patients at the time they start long-term follow-up surveillance in 2012. Although the hard-copy form is available from the agency’s National Cancer Survivorship Initiative, the NHS continues to test the care plan and simultaneously is finalizing an electronic version planned for release next year, Dr. Jane Maher said at the first EORTC Cancer Survivorship Summit hosted by the European Organisation for Research and Treatment of Cancer.

"The paper version is freely available," while testing continues at 160 U.K. sites," said Dr. Maher, chief medical officer at Macmillan Cancer Support, London, and a clinical leader with the NHS.

"The first evaluation is done. Patients really liked it and found it helpful and it was possible to do, so it’s at the point where it can be spread, but key elements are still in evaluation until 2015," she said in an interview.

"We can now say that we have a tool to shape the conversation" between a cancer patient who has finished the initial phase of treatment and her care provider. "We have a framework for patient education, for treatment, and for review of their cancer care." Patients who have gone through this care-planning conversation "felt more controlled and that their care was more coordinated."

Prevailing attitudes about cancer management pose some of the biggest challenges in developing and implementing cancer plans, Dr. Maher said. "Cancer is seen as an acute illness that is managed acutely by specialists," she noted. Timing the discussions introduces another challenge. "Physicians were prepared to discuss treatment-related consequences at the time of treatment, but patients did not want to hear it then because they were in life-and-death mode," she said.

In contrast, when patients felt ready to get this information, at the end of their treatment, "physicians weren’t prepared to discuss it for fear of frightening patients." But having some type of conversation on long-term prospects is very important, more critical than any of the individual tools, she said.

U.S. efforts still in process

This rollout puts U.K. cancer survivorship planning ahead of the United States and the rest of Europe. The U.S. National Cancer Institute (NCI) "has a research call out to test models for having that conversation with patient-centered goals," said Catherine Alfano, Ph.D., deputy director of survivorship research at the NCI in Bethesda, Md.

"How do you sit with a patient and family members and friends and talk about what just happened and what will happen in the future? Right now we don’t have a best model for this, but I think we owe it to survivors to identify best practices and get it to all of them, and make it patient centered, so it’s not just an oncologist who hands a piece of paper to the cancer patient and says this is what you need to do, because that won’t work. We need a conversation to take place where cancer patients are engaged in setting their survivorship care goals," Dr. Alfano said in an interview.

"We’re talking a lot right now about giving cancer survivors a treatment summary so they know what they received, and equally important a survivorship care plan that talks about what the patient needs to look out for, what providers they’ll see, how often, and how will their care be coordinated. This is implemented in very different ways throughout the U.S. right now. There is a mad rush to do it. What we want is for a conversation to take place so that cancer survivors are engaged in setting goals for their survivorship care," Dr. Alfano said.

Late last year, NCI researchers and their collaborators published results from a recent survey of more than 1,100 U.S. oncologists and more than 1,000 U.S. primary-care physicians about their practice regarding survivor care plans for their cancer patients (J. Natl. Cancer Inst. 2013;105:1579-87). These plans were used by about 20% of the surveyed oncologists and 13% of primary care physicians. Higher numbers reported giving patients treatment summaries at the end of their acute care, usual practice for half of the responding oncologists and about a third of the primary-care physicians.

Survivorship needs grow and diversify

Optimizing care for cancer survivors and better involving them in long-term surveillance and care has become increasingly important as the numbers continue to climb. "The number of cancer survivors is larger than ever, and as U.S. boomers become 65 years and older, there will be a tsunami of more cancer survivors, Dr. Alfano predicted.

"This huge tsunami [of cancer patients] is coming over the next decade, and we are completely unprepared. We have done a poor job of understanding the needs of adult cancer survivors," she warned. "There is a scramble underway now to understand what adult cancer survivors need."

For example, cardiovascular adverse effects from several different cancer treatments often occur many years after treatment. "Usually, these patients are not in surveillance anymore," said Dr. Thomas M. Suter of the Swiss Cardiovascular Centre in Bern, Switzerland. "No one is looking at these patients. They need to be on medical treatment to improve their prognosis," such as treatment with an angiotensin-converting enzyme inhibitor, he said in his talk at the meeting.

Another shortcoming of U.S. cancer survivor care is the fragmented care many patients receive and a glaring lack of coordination.

U.S. cancer survivors "wind up seeing multiple providers for late effects like cardiovascular disease, osteoporosis, and diabetes, which is on top of their surveillance for a recurrence of their primary cancer or appearance of a second primary cancer," said Dr. Alfano. "We have to create a more coordinated form of care that is truly team based to make it easier for patients and relieve the huge burden on them and their families. I hear from cancer survivors and families all the time that it takes hours each week just to coordinate a cancer patient’s care. We need to ease this burden. We have done a poor job understanding the needs of adult cancer survivors."

An especially pressing need is for information on lifestyle change, said Dr. Alfano. "Cancer survivors are looking for things they can do personally to take control back over their morbidity and mortality."

Cancer patients are often highly motivated to take steps to cut their risk of treatment-related adverse outcomes, recurrence, or development of a second primary cancer. In 2012, the American Cancer Society issued nutrition and physical activity guidelines for cancer survivors (CA Cancer J. Clin. 2012;62:30-67), noted Dr. Kevin D. Stein, managing director of the behavioral research center of the ACS in a talk at the meeting.

"We’ve done a poor job of getting lifestyle-change information to cancer survivors. We need to include lifestyle change as part of survivorship plans," said Dr. Alfano.

Despite the shortcomings in survivorship planning in the United States and United Kingdom, it outstrips what currently occurs in most of Europe. "We are far behind the United States," said Dr. Elizabeth Charlotte Moser, professor at the Champalimaud Foundation in Lisbon and chair of the EORTC Survivorship Task Force.

In addition to having Europe follow the United Kingdom and United States in expanding survivor planning, she anticipates a contribution from several European-based cancer-treatment trials for which long-term follow-up data are available. For example, six EORTC-sponsored trials in patients with either early-stage breast cancer or ductal carcinoma in situ together enrolled more than 20,000 patients starting in 1986. EORTC researchers are planning to collect long-term outcome data from as many of these patients as can be tracked down, Dr. Moser said.

Dr. Maher, Dr. Alfano, Dr. Stein, and Dr. Moser said they had no disclosures. Dr. Suter said that he has been a speaker on behalf of Roche, RoboPharma, and Novartis.

[email protected]

On Twitter @mitchelzoler

BRUSSELS – Cancer survivorship planning in the United Kingdom is ahead of the United States and the rest of Europe with the recent rollout of a model care plan for cancer patients, along with a guide for conversations between cancer-care health care providers and patients at the time they start long-term follow-up surveillance.

A care plan guides patients as they segue from acute cancer treatment to longer-term health maintenance and follow-up. The plan can include a personalized record of treatment received, prognosis, recommended follow-up examinations, symptoms to be alert for, and other critical information when patients transition to life as a cancer survivor.

The U.K.’s National Health System (NHS) first released a hard-copy version of a model care plan for cancer patients along with a guide for conversations with patients at the time they start long-term follow-up surveillance in 2012. Although the hard-copy form is available from the agency’s National Cancer Survivorship Initiative, the NHS continues to test the care plan and simultaneously is finalizing an electronic version planned for release next year, Dr. Jane Maher said at the first EORTC Cancer Survivorship Summit hosted by the European Organisation for Research and Treatment of Cancer.

"The paper version is freely available," while testing continues at 160 U.K. sites," said Dr. Maher, chief medical officer at Macmillan Cancer Support, London, and a clinical leader with the NHS.

"The first evaluation is done. Patients really liked it and found it helpful and it was possible to do, so it’s at the point where it can be spread, but key elements are still in evaluation until 2015," she said in an interview.

"We can now say that we have a tool to shape the conversation" between a cancer patient who has finished the initial phase of treatment and her care provider. "We have a framework for patient education, for treatment, and for review of their cancer care." Patients who have gone through this care-planning conversation "felt more controlled and that their care was more coordinated."

Prevailing attitudes about cancer management pose some of the biggest challenges in developing and implementing cancer plans, Dr. Maher said. "Cancer is seen as an acute illness that is managed acutely by specialists," she noted. Timing the discussions introduces another challenge. "Physicians were prepared to discuss treatment-related consequences at the time of treatment, but patients did not want to hear it then because they were in life-and-death mode," she said.

In contrast, when patients felt ready to get this information, at the end of their treatment, "physicians weren’t prepared to discuss it for fear of frightening patients." But having some type of conversation on long-term prospects is very important, more critical than any of the individual tools, she said.

U.S. efforts still in process

This rollout puts U.K. cancer survivorship planning ahead of the United States and the rest of Europe. The U.S. National Cancer Institute (NCI) "has a research call out to test models for having that conversation with patient-centered goals," said Catherine Alfano, Ph.D., deputy director of survivorship research at the NCI in Bethesda, Md.

"How do you sit with a patient and family members and friends and talk about what just happened and what will happen in the future? Right now we don’t have a best model for this, but I think we owe it to survivors to identify best practices and get it to all of them, and make it patient centered, so it’s not just an oncologist who hands a piece of paper to the cancer patient and says this is what you need to do, because that won’t work. We need a conversation to take place where cancer patients are engaged in setting their survivorship care goals," Dr. Alfano said in an interview.

"We’re talking a lot right now about giving cancer survivors a treatment summary so they know what they received, and equally important a survivorship care plan that talks about what the patient needs to look out for, what providers they’ll see, how often, and how will their care be coordinated. This is implemented in very different ways throughout the U.S. right now. There is a mad rush to do it. What we want is for a conversation to take place so that cancer survivors are engaged in setting goals for their survivorship care," Dr. Alfano said.

Late last year, NCI researchers and their collaborators published results from a recent survey of more than 1,100 U.S. oncologists and more than 1,000 U.S. primary-care physicians about their practice regarding survivor care plans for their cancer patients (J. Natl. Cancer Inst. 2013;105:1579-87). These plans were used by about 20% of the surveyed oncologists and 13% of primary care physicians. Higher numbers reported giving patients treatment summaries at the end of their acute care, usual practice for half of the responding oncologists and about a third of the primary-care physicians.

Survivorship needs grow and diversify

Optimizing care for cancer survivors and better involving them in long-term surveillance and care has become increasingly important as the numbers continue to climb. "The number of cancer survivors is larger than ever, and as U.S. boomers become 65 years and older, there will be a tsunami of more cancer survivors, Dr. Alfano predicted.

"This huge tsunami [of cancer patients] is coming over the next decade, and we are completely unprepared. We have done a poor job of understanding the needs of adult cancer survivors," she warned. "There is a scramble underway now to understand what adult cancer survivors need."

For example, cardiovascular adverse effects from several different cancer treatments often occur many years after treatment. "Usually, these patients are not in surveillance anymore," said Dr. Thomas M. Suter of the Swiss Cardiovascular Centre in Bern, Switzerland. "No one is looking at these patients. They need to be on medical treatment to improve their prognosis," such as treatment with an angiotensin-converting enzyme inhibitor, he said in his talk at the meeting.

Another shortcoming of U.S. cancer survivor care is the fragmented care many patients receive and a glaring lack of coordination.

U.S. cancer survivors "wind up seeing multiple providers for late effects like cardiovascular disease, osteoporosis, and diabetes, which is on top of their surveillance for a recurrence of their primary cancer or appearance of a second primary cancer," said Dr. Alfano. "We have to create a more coordinated form of care that is truly team based to make it easier for patients and relieve the huge burden on them and their families. I hear from cancer survivors and families all the time that it takes hours each week just to coordinate a cancer patient’s care. We need to ease this burden. We have done a poor job understanding the needs of adult cancer survivors."

An especially pressing need is for information on lifestyle change, said Dr. Alfano. "Cancer survivors are looking for things they can do personally to take control back over their morbidity and mortality."

Cancer patients are often highly motivated to take steps to cut their risk of treatment-related adverse outcomes, recurrence, or development of a second primary cancer. In 2012, the American Cancer Society issued nutrition and physical activity guidelines for cancer survivors (CA Cancer J. Clin. 2012;62:30-67), noted Dr. Kevin D. Stein, managing director of the behavioral research center of the ACS in a talk at the meeting.

"We’ve done a poor job of getting lifestyle-change information to cancer survivors. We need to include lifestyle change as part of survivorship plans," said Dr. Alfano.

Despite the shortcomings in survivorship planning in the United States and United Kingdom, it outstrips what currently occurs in most of Europe. "We are far behind the United States," said Dr. Elizabeth Charlotte Moser, professor at the Champalimaud Foundation in Lisbon and chair of the EORTC Survivorship Task Force.

In addition to having Europe follow the United Kingdom and United States in expanding survivor planning, she anticipates a contribution from several European-based cancer-treatment trials for which long-term follow-up data are available. For example, six EORTC-sponsored trials in patients with either early-stage breast cancer or ductal carcinoma in situ together enrolled more than 20,000 patients starting in 1986. EORTC researchers are planning to collect long-term outcome data from as many of these patients as can be tracked down, Dr. Moser said.

Dr. Maher, Dr. Alfano, Dr. Stein, and Dr. Moser said they had no disclosures. Dr. Suter said that he has been a speaker on behalf of Roche, RoboPharma, and Novartis.

[email protected]

On Twitter @mitchelzoler

BRUSSELS – Cancer survivorship planning in the United Kingdom is ahead of the United States and the rest of Europe with the recent rollout of a model care plan for cancer patients, along with a guide for conversations between cancer-care health care providers and patients at the time they start long-term follow-up surveillance.

A care plan guides patients as they segue from acute cancer treatment to longer-term health maintenance and follow-up. The plan can include a personalized record of treatment received, prognosis, recommended follow-up examinations, symptoms to be alert for, and other critical information when patients transition to life as a cancer survivor.

The U.K.’s National Health System (NHS) first released a hard-copy version of a model care plan for cancer patients along with a guide for conversations with patients at the time they start long-term follow-up surveillance in 2012. Although the hard-copy form is available from the agency’s National Cancer Survivorship Initiative, the NHS continues to test the care plan and simultaneously is finalizing an electronic version planned for release next year, Dr. Jane Maher said at the first EORTC Cancer Survivorship Summit hosted by the European Organisation for Research and Treatment of Cancer.

"The paper version is freely available," while testing continues at 160 U.K. sites," said Dr. Maher, chief medical officer at Macmillan Cancer Support, London, and a clinical leader with the NHS.

"The first evaluation is done. Patients really liked it and found it helpful and it was possible to do, so it’s at the point where it can be spread, but key elements are still in evaluation until 2015," she said in an interview.

"We can now say that we have a tool to shape the conversation" between a cancer patient who has finished the initial phase of treatment and her care provider. "We have a framework for patient education, for treatment, and for review of their cancer care." Patients who have gone through this care-planning conversation "felt more controlled and that their care was more coordinated."

Prevailing attitudes about cancer management pose some of the biggest challenges in developing and implementing cancer plans, Dr. Maher said. "Cancer is seen as an acute illness that is managed acutely by specialists," she noted. Timing the discussions introduces another challenge. "Physicians were prepared to discuss treatment-related consequences at the time of treatment, but patients did not want to hear it then because they were in life-and-death mode," she said.

In contrast, when patients felt ready to get this information, at the end of their treatment, "physicians weren’t prepared to discuss it for fear of frightening patients." But having some type of conversation on long-term prospects is very important, more critical than any of the individual tools, she said.

U.S. efforts still in process

This rollout puts U.K. cancer survivorship planning ahead of the United States and the rest of Europe. The U.S. National Cancer Institute (NCI) "has a research call out to test models for having that conversation with patient-centered goals," said Catherine Alfano, Ph.D., deputy director of survivorship research at the NCI in Bethesda, Md.

"How do you sit with a patient and family members and friends and talk about what just happened and what will happen in the future? Right now we don’t have a best model for this, but I think we owe it to survivors to identify best practices and get it to all of them, and make it patient centered, so it’s not just an oncologist who hands a piece of paper to the cancer patient and says this is what you need to do, because that won’t work. We need a conversation to take place where cancer patients are engaged in setting their survivorship care goals," Dr. Alfano said in an interview.

"We’re talking a lot right now about giving cancer survivors a treatment summary so they know what they received, and equally important a survivorship care plan that talks about what the patient needs to look out for, what providers they’ll see, how often, and how will their care be coordinated. This is implemented in very different ways throughout the U.S. right now. There is a mad rush to do it. What we want is for a conversation to take place so that cancer survivors are engaged in setting goals for their survivorship care," Dr. Alfano said.

Late last year, NCI researchers and their collaborators published results from a recent survey of more than 1,100 U.S. oncologists and more than 1,000 U.S. primary-care physicians about their practice regarding survivor care plans for their cancer patients (J. Natl. Cancer Inst. 2013;105:1579-87). These plans were used by about 20% of the surveyed oncologists and 13% of primary care physicians. Higher numbers reported giving patients treatment summaries at the end of their acute care, usual practice for half of the responding oncologists and about a third of the primary-care physicians.

Survivorship needs grow and diversify

Optimizing care for cancer survivors and better involving them in long-term surveillance and care has become increasingly important as the numbers continue to climb. "The number of cancer survivors is larger than ever, and as U.S. boomers become 65 years and older, there will be a tsunami of more cancer survivors, Dr. Alfano predicted.

"This huge tsunami [of cancer patients] is coming over the next decade, and we are completely unprepared. We have done a poor job of understanding the needs of adult cancer survivors," she warned. "There is a scramble underway now to understand what adult cancer survivors need."

For example, cardiovascular adverse effects from several different cancer treatments often occur many years after treatment. "Usually, these patients are not in surveillance anymore," said Dr. Thomas M. Suter of the Swiss Cardiovascular Centre in Bern, Switzerland. "No one is looking at these patients. They need to be on medical treatment to improve their prognosis," such as treatment with an angiotensin-converting enzyme inhibitor, he said in his talk at the meeting.

Another shortcoming of U.S. cancer survivor care is the fragmented care many patients receive and a glaring lack of coordination.

U.S. cancer survivors "wind up seeing multiple providers for late effects like cardiovascular disease, osteoporosis, and diabetes, which is on top of their surveillance for a recurrence of their primary cancer or appearance of a second primary cancer," said Dr. Alfano. "We have to create a more coordinated form of care that is truly team based to make it easier for patients and relieve the huge burden on them and their families. I hear from cancer survivors and families all the time that it takes hours each week just to coordinate a cancer patient’s care. We need to ease this burden. We have done a poor job understanding the needs of adult cancer survivors."

An especially pressing need is for information on lifestyle change, said Dr. Alfano. "Cancer survivors are looking for things they can do personally to take control back over their morbidity and mortality."

Cancer patients are often highly motivated to take steps to cut their risk of treatment-related adverse outcomes, recurrence, or development of a second primary cancer. In 2012, the American Cancer Society issued nutrition and physical activity guidelines for cancer survivors (CA Cancer J. Clin. 2012;62:30-67), noted Dr. Kevin D. Stein, managing director of the behavioral research center of the ACS in a talk at the meeting.

"We’ve done a poor job of getting lifestyle-change information to cancer survivors. We need to include lifestyle change as part of survivorship plans," said Dr. Alfano.

Despite the shortcomings in survivorship planning in the United States and United Kingdom, it outstrips what currently occurs in most of Europe. "We are far behind the United States," said Dr. Elizabeth Charlotte Moser, professor at the Champalimaud Foundation in Lisbon and chair of the EORTC Survivorship Task Force.

In addition to having Europe follow the United Kingdom and United States in expanding survivor planning, she anticipates a contribution from several European-based cancer-treatment trials for which long-term follow-up data are available. For example, six EORTC-sponsored trials in patients with either early-stage breast cancer or ductal carcinoma in situ together enrolled more than 20,000 patients starting in 1986. EORTC researchers are planning to collect long-term outcome data from as many of these patients as can be tracked down, Dr. Moser said.

Dr. Maher, Dr. Alfano, Dr. Stein, and Dr. Moser said they had no disclosures. Dr. Suter said that he has been a speaker on behalf of Roche, RoboPharma, and Novartis.

[email protected]

On Twitter @mitchelzoler