Navigating cancer slideart

Notas del editor

1. The definition of "survivor" in the Institute of Medicine (IOM) Report, From Cancer Patient to Cancer Survivor: Lost in Transition, states that "an individual is considered a cancer survivor from the time of cancer diagnosis through the balance of his or her life, according to the National Coalition for Cancer Survivorship and the NCI Office of Cancer Survivorship". Two common definitions include: www.cancer.net Having no disease after the completion of treatment, The process of living with, through, and beyond cancer. By this definition, cancer survivorship begins at diagnosis. It includes people who continue to have treatment to either reduce risk of recurrence or to manage chronic disease. A cancer survivor is any person who has been diagnosed with cancer, from the time of diagnosis through the balance of life. There are at least three distinct phases associated with cancer survival, including the time from diagnosis to the end of initial treatment, the transition from treatment to extended survival, and long-term survival.1 In practice, however, the term “survivor” is often used to mean someone who has finished active treatment. Survivorship encompasses a range of cancer experiences and trajectories, including: • Living cancer-free for the remainder of life • Living cancer-free for many years but experiencing one or more serious, late complications of treatment • Living cancer-free for many years, but dying after a late recurrence • Living cancer-free after the first cancer is treated, but developing a second cancer • Living with intermittent periods of active disease requiring treatment • Living with cancer continuously without a disease-free period
2. This graph shows the number of cancer survivors in the US The number of people with a history of cancer in the United States has increased dramatically, from 3 million in 1971 to about 14.5 million today.   In the United States, half of all men and one-third of all women will develop cancer in their lifetimes. (2005 IOM Report) The increase in survival rates is largely thought to be due to the following four developments: Improved identification of cancers that can sometimes be found early through screening, such asmammography for breast cancer, the prostate specific antigen (PSA) test for prostate cancer, the Pap testfor cervical cancer, and colonoscopy for colorectal cancer Improvements in treatment More effective treatment of side effects, making it possible to give patients the planned doses of cancer drugs The development of new treatments, such as targeted therapies Cancer survivors represent a growing population, heterogeneous in their need for medical care, psychosocial support, and practical assistance.  As of January 1, 2012, approximately 13.7 million cancer survivors were living in the United States with prevalence projected to approach 18 million by 2022. Sixty-four percent of this population have survived 5 years or more; 40% have survived 10 years or more; and 15% have survived 20 years or more after diagnosis. Over the next decade, the number of people who have lived 5 years or more after their cancer diagnosis is projected to increase approximately 37% to 11.9 million. (de Moor et al.)
3. This graph shows survival rates for those who are diagnosed with cancer. Breakdown on graph, starting at the bottom: Orange shows those who have survived < 1year Red shows those who have survived 1-< 5 years Green shows those who have survived 5-< 10 years Purple shows those who have survived 10-<15 years Turquoise shows those who have survived 15+ years Numbers in each category are steadily growing and are expected to continue growing Today’s numbers: About 68% of today’s cancer survivors were diagnosed with cancer five or more years ago.   Approximately 15% of all cancer survivors were diagnosed 20 or more years ago. 
4. Individual slides for each: 1960: 75% did not survive beyond 5 years and considered a “terminal illness” (list source) (ask Diane) 1985: Dr. Fitzhugh Mullan identified phases of survivorship in “Seasons of Survival” editorial IN NE Journal. 1986: NCCS was formed as an advocacy group for cancer survivors. 1995-1996: Landmark NCCS report leads to creation of OCS. 2005: IOM report “title” established standards of care for cancer survivors. 2015: Standard 3.3 Cancer Survivorship Care Plan required for all cancer patients 2015 and beyond: Cancer is now considered a “chronic condition” rather than a “terminal illness” Landmarks along the Way 1960: only 25% of cancer patients survived 5 years of more. About 68% of today’s cancer survivors were diagnosed with cancer five or more years ago.  And, approximately 15% of all cancer survivors were diagnosed 20 or more years ago. See: American Cancer Society. When Cancer Doesn’t Go Away. Accessed 1/27/15 http://www.cancer.org/treatment/survivorshipduringandaftertreatment/when-cancer-doesnt-go-away 1985: Dr. Fitzhugh Mullan writes editorial in New England Journal of Medicine re: his cancer experience that began when he was a 32 y.o. physician, husband, parent and son. First to describe survivorship and its phases that he called acute survival (starts w/diagnosis & extends through treatment), extended survival (remission and post-treatment) and permanent survival (evolves over time when know cancer is permanently arrested). Galvanized action on behalf of cancer survivors. 1986, the founders of National Coalition for Cancer Survivorship (NCCS) set out to establish an organization that replace the words “cancer victim” with “cancer survivor,” and bring about a different notion of the cancer experience. The founders envisioned an organization that would deal with the full spectrum of survivorship issues related to living with, through and beyond a cancer diagnosis. 1995: NCCS develops its Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability. This was the first report to approach quality cancer care for the patient/survivor perspective and provided the impetus that led to the creation of the National Cancer Institute’s Office of Cancer Survivorship in 1996. 2005 IOM report: The IOM and National Research Council 2005 report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommends that patients with cancer who are completing the first of course treatment be “provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained.” The recommendation suggested that these plans would help cancer survivors who may otherwise get “lost” in the transitions from the care they received during treatment through the phases of their life or stages of their disease course. 2015: Commission on Cancer Accreditation Committee requires implementation of Cancer Survivorship Care Plan to help improve communication, quality, and coordination of care for cancer survivors.  Recall statistics we just saw: increasing number of survivors who are living longer as cancer survivors. Today, cancer is often managed as a chronic condition. Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away.  A doctor may use the term controlled if tests or scans show that the cancer is not changing over time. Another way of defining control would be calling the disease stable. Cancers like this are watched closely to be sure that they don’t start growing. Most chronic cancers cannot be cured, but some can be controlled for months or even years. In fact, there’s always a chance that cancer will go into remission. Your doctor will talk to you about your treatment options. You may also decide to get a second opinion or get treated at a comprehensive cancer center that has more experience with your type of cancer. There may be clinical trials available, too. Some people get some of the same types of treatment that they had the first time (for instance, surgery or chemo), but some treatments may be less helpful as the cancer progresses. Treatment decisions are based on the type of disease, location of the cancer, amount of cancer, extent of spread, your overall health, and your personal wishes. Repeated recurrences, often with shorter time periods in between remissions, can become discouraging and exhausting. It can be even more discouraging if the cancer never goes away at all. The question of whether to keep treating cancer that doesn’t go away or comes back again and again is a valid one. Your choices about continuing treatment are personal and based on your needs, wishes, and abilities. There is no right or wrong decision on how to handle this phase of the illness. Still, it’s important to know that even those who are not cured of cancer may go on living for months or years, even though there may be changes in their lives. Many families adjust to this kind of treatment schedule. Having a cancer that cannot be cured does not put you beyond hope or help; you may be living with a disease that can be treated and controlled for a fairly long time. (ACS when cancer doesn’t go away)
5. Individual slides for each: 1960: 75% did not survive beyond 5 years and considered a “terminal illness” (list source) (ask Diane) 1985: Dr. Fitzhugh Mullan identified phases of survivorship in “Seasons of Survival” editorial IN NE Journal. 1986: NCCS was formed as an advocacy group for cancer survivors. 1995-1996: Landmark NCCS report leads to creation of OCS. 2005: IOM report “title” established standards of care for cancer survivors. 2015: Standard 3.3 Cancer Survivorship Care Plan required for all cancer patients 2015 and beyond: Cancer is now considered a “chronic condition” rather than a “terminal illness” Landmarks along the Way 1960: only 25% of cancer patients survived 5 years of more. About 68% of today’s cancer survivors were diagnosed with cancer five or more years ago.  And, approximately 15% of all cancer survivors were diagnosed 20 or more years ago. See: American Cancer Society. When Cancer Doesn’t Go Away. Accessed 1/27/15 http://www.cancer.org/treatment/survivorshipduringandaftertreatment/when-cancer-doesnt-go-away 1985: Dr. Fitzhugh Mullan writes editorial in New England Journal of Medicine re: his cancer experience that began when he was a 32 y.o. physician, husband, parent and son. First to describe survivorship and its phases that he called acute survival (starts w/diagnosis & extends through treatment), extended survival (remission and post-treatment) and permanent survival (evolves over time when know cancer is permanently arrested). Galvanized action on behalf of cancer survivors. 1986, the founders of National Coalition for Cancer Survivorship (NCCS) set out to establish an organization that replace the words “cancer victim” with “cancer survivor,” and bring about a different notion of the cancer experience. The founders envisioned an organization that would deal with the full spectrum of survivorship issues related to living with, through and beyond a cancer diagnosis. 1995: NCCS develops its Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability. This was the first report to approach quality cancer care for the patient/survivor perspective and provided the impetus that led to the creation of the National Cancer Institute’s Office of Cancer Survivorship in 1996. 2005 IOM report: The IOM and National Research Council 2005 report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommends that patients with cancer who are completing the first of course treatment be “provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained.” The recommendation suggested that these plans would help cancer survivors who may otherwise get “lost” in the transitions from the care they received during treatment through the phases of their life or stages of their disease course. 2015: Commission on Cancer Accreditation Committee requires implementation of Cancer Survivorship Care Plan to help improve communication, quality, and coordination of care for cancer survivors.  Recall statistics we just saw: increasing number of survivors who are living longer as cancer survivors. Today, cancer is often managed as a chronic condition. Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away.  A doctor may use the term controlled if tests or scans show that the cancer is not changing over time. Another way of defining control would be calling the disease stable. Cancers like this are watched closely to be sure that they don’t start growing. Most chronic cancers cannot be cured, but some can be controlled for months or even years. In fact, there’s always a chance that cancer will go into remission. Your doctor will talk to you about your treatment options. You may also decide to get a second opinion or get treated at a comprehensive cancer center that has more experience with your type of cancer. There may be clinical trials available, too. Some people get some of the same types of treatment that they had the first time (for instance, surgery or chemo), but some treatments may be less helpful as the cancer progresses. Treatment decisions are based on the type of disease, location of the cancer, amount of cancer, extent of spread, your overall health, and your personal wishes. Repeated recurrences, often with shorter time periods in between remissions, can become discouraging and exhausting. It can be even more discouraging if the cancer never goes away at all. The question of whether to keep treating cancer that doesn’t go away or comes back again and again is a valid one. Your choices about continuing treatment are personal and based on your needs, wishes, and abilities. There is no right or wrong decision on how to handle this phase of the illness. Still, it’s important to know that even those who are not cured of cancer may go on living for months or years, even though there may be changes in their lives. Many families adjust to this kind of treatment schedule. Having a cancer that cannot be cured does not put you beyond hope or help; you may be living with a disease that can be treated and controlled for a fairly long time. (ACS when cancer doesn’t go away)
6. Individual slides for each: 1960: 75% did not survive beyond 5 years and considered a “terminal illness” (list source) (ask Diane) 1985: Dr. Fitzhugh Mullan identified phases of survivorship in “Seasons of Survival” editorial IN NE Journal. 1986: NCCS was formed as an advocacy group for cancer survivors. 1995-1996: Landmark NCCS report leads to creation of OCS. 2005: IOM report “title” established standards of care for cancer survivors. 2015: Standard 3.3 Cancer Survivorship Care Plan required for all cancer patients 2015 and beyond: Cancer is now considered a “chronic condition” rather than a “terminal illness” Landmarks along the Way 1960: only 25% of cancer patients survived 5 years of more. About 68% of today’s cancer survivors were diagnosed with cancer five or more years ago.  And, approximately 15% of all cancer survivors were diagnosed 20 or more years ago. See: American Cancer Society. When Cancer Doesn’t Go Away. Accessed 1/27/15 http://www.cancer.org/treatment/survivorshipduringandaftertreatment/when-cancer-doesnt-go-away 1985: Dr. Fitzhugh Mullan writes editorial in New England Journal of Medicine re: his cancer experience that began when he was a 32 y.o. physician, husband, parent and son. First to describe survivorship and its phases that he called acute survival (starts w/diagnosis & extends through treatment), extended survival (remission and post-treatment) and permanent survival (evolves over time when know cancer is permanently arrested). Galvanized action on behalf of cancer survivors. 1986, the founders of National Coalition for Cancer Survivorship (NCCS) set out to establish an organization that replace the words “cancer victim” with “cancer survivor,” and bring about a different notion of the cancer experience. The founders envisioned an organization that would deal with the full spectrum of survivorship issues related to living with, through and beyond a cancer diagnosis. 1995: NCCS develops its Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability. This was the first report to approach quality cancer care for the patient/survivor perspective and provided the impetus that led to the creation of the National Cancer Institute’s Office of Cancer Survivorship in 1996. 2005 IOM report: The IOM and National Research Council 2005 report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommends that patients with cancer who are completing the first of course treatment be “provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained.” The recommendation suggested that these plans would help cancer survivors who may otherwise get “lost” in the transitions from the care they received during treatment through the phases of their life or stages of their disease course. 2015: Commission on Cancer Accreditation Committee requires implementation of Cancer Survivorship Care Plan to help improve communication, quality, and coordination of care for cancer survivors.  Recall statistics we just saw: increasing number of survivors who are living longer as cancer survivors. Today, cancer is often managed as a chronic condition. Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away.  A doctor may use the term controlled if tests or scans show that the cancer is not changing over time. Another way of defining control would be calling the disease stable. Cancers like this are watched closely to be sure that they don’t start growing. Most chronic cancers cannot be cured, but some can be controlled for months or even years. In fact, there’s always a chance that cancer will go into remission. Your doctor will talk to you about your treatment options. You may also decide to get a second opinion or get treated at a comprehensive cancer center that has more experience with your type of cancer. There may be clinical trials available, too. Some people get some of the same types of treatment that they had the first time (for instance, surgery or chemo), but some treatments may be less helpful as the cancer progresses. Treatment decisions are based on the type of disease, location of the cancer, amount of cancer, extent of spread, your overall health, and your personal wishes. Repeated recurrences, often with shorter time periods in between remissions, can become discouraging and exhausting. It can be even more discouraging if the cancer never goes away at all. The question of whether to keep treating cancer that doesn’t go away or comes back again and again is a valid one. Your choices about continuing treatment are personal and based on your needs, wishes, and abilities. There is no right or wrong decision on how to handle this phase of the illness. Still, it’s important to know that even those who are not cured of cancer may go on living for months or years, even though there may be changes in their lives. Many families adjust to this kind of treatment schedule. Having a cancer that cannot be cured does not put you beyond hope or help; you may be living with a disease that can be treated and controlled for a fairly long time. (ACS when cancer doesn’t go away)
7. Individual slides for each: 1960: 75% did not survive beyond 5 years and considered a “terminal illness” (list source) (ask Diane) 1985: Dr. Fitzhugh Mullan identified phases of survivorship in “Seasons of Survival” editorial IN NE Journal. 1986: NCCS was formed as an advocacy group for cancer survivors. 1995-1996: Landmark NCCS report leads to creation of OCS. 2005: IOM report “title” established standards of care for cancer survivors. 2015: Standard 3.3 Cancer Survivorship Care Plan required for all cancer patients 2015 and beyond: Cancer is now considered a “chronic condition” rather than a “terminal illness” Landmarks along the Way 1960: only 25% of cancer patients survived 5 years of more. About 68% of today’s cancer survivors were diagnosed with cancer five or more years ago.  And, approximately 15% of all cancer survivors were diagnosed 20 or more years ago. See: American Cancer Society. When Cancer Doesn’t Go Away. Accessed 1/27/15 http://www.cancer.org/treatment/survivorshipduringandaftertreatment/when-cancer-doesnt-go-away 1985: Dr. Fitzhugh Mullan writes editorial in New England Journal of Medicine re: his cancer experience that began when he was a 32 y.o. physician, husband, parent and son. First to describe survivorship and its phases that he called acute survival (starts w/diagnosis & extends through treatment), extended survival (remission and post-treatment) and permanent survival (evolves over time when know cancer is permanently arrested). Galvanized action on behalf of cancer survivors. 1986, the founders of National Coalition for Cancer Survivorship (NCCS) set out to establish an organization that replace the words “cancer victim” with “cancer survivor,” and bring about a different notion of the cancer experience. The founders envisioned an organization that would deal with the full spectrum of survivorship issues related to living with, through and beyond a cancer diagnosis. 1995: NCCS develops its Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability. This was the first report to approach quality cancer care for the patient/survivor perspective and provided the impetus that led to the creation of the National Cancer Institute’s Office of Cancer Survivorship in 1996. 2005 IOM report: The IOM and National Research Council 2005 report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommends that patients with cancer who are completing the first of course treatment be “provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained.” The recommendation suggested that these plans would help cancer survivors who may otherwise get “lost” in the transitions from the care they received during treatment through the phases of their life or stages of their disease course. 2015: Commission on Cancer Accreditation Committee requires implementation of Cancer Survivorship Care Plan to help improve communication, quality, and coordination of care for cancer survivors.  Recall statistics we just saw: increasing number of survivors who are living longer as cancer survivors. Today, cancer is often managed as a chronic condition. Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away.  A doctor may use the term controlled if tests or scans show that the cancer is not changing over time. Another way of defining control would be calling the disease stable. Cancers like this are watched closely to be sure that they don’t start growing. Most chronic cancers cannot be cured, but some can be controlled for months or even years. In fact, there’s always a chance that cancer will go into remission. Your doctor will talk to you about your treatment options. You may also decide to get a second opinion or get treated at a comprehensive cancer center that has more experience with your type of cancer. There may be clinical trials available, too. Some people get some of the same types of treatment that they had the first time (for instance, surgery or chemo), but some treatments may be less helpful as the cancer progresses. Treatment decisions are based on the type of disease, location of the cancer, amount of cancer, extent of spread, your overall health, and your personal wishes. Repeated recurrences, often with shorter time periods in between remissions, can become discouraging and exhausting. It can be even more discouraging if the cancer never goes away at all. The question of whether to keep treating cancer that doesn’t go away or comes back again and again is a valid one. Your choices about continuing treatment are personal and based on your needs, wishes, and abilities. There is no right or wrong decision on how to handle this phase of the illness. Still, it’s important to know that even those who are not cured of cancer may go on living for months or years, even though there may be changes in their lives. Many families adjust to this kind of treatment schedule. Having a cancer that cannot be cured does not put you beyond hope or help; you may be living with a disease that can be treated and controlled for a fairly long time. (ACS when cancer doesn’t go away)
8. Individual slides for each: 1960: 75% did not survive beyond 5 years and considered a “terminal illness” (list source) (ask Diane) 1985: Dr. Fitzhugh Mullan identified phases of survivorship in “Seasons of Survival” editorial IN NE Journal. 1986: NCCS was formed as an advocacy group for cancer survivors. 1995-1996: Landmark NCCS report leads to creation of OCS. 2005: IOM report “title” established standards of care for cancer survivors. 2015: Standard 3.3 Cancer Survivorship Care Plan required for all cancer patients 2015 and beyond: Cancer is now considered a “chronic condition” rather than a “terminal illness” Landmarks along the Way 1960: only 25% of cancer patients survived 5 years of more. About 68% of today’s cancer survivors were diagnosed with cancer five or more years ago.  And, approximately 15% of all cancer survivors were diagnosed 20 or more years ago. See: American Cancer Society. When Cancer Doesn’t Go Away. Accessed 1/27/15 http://www.cancer.org/treatment/survivorshipduringandaftertreatment/when-cancer-doesnt-go-away 1985: Dr. Fitzhugh Mullan writes editorial in New England Journal of Medicine re: his cancer experience that began when he was a 32 y.o. physician, husband, parent and son. First to describe survivorship and its phases that he called acute survival (starts w/diagnosis & extends through treatment), extended survival (remission and post-treatment) and permanent survival (evolves over time when know cancer is permanently arrested). Galvanized action on behalf of cancer survivors. 1986, the founders of National Coalition for Cancer Survivorship (NCCS) set out to establish an organization that replace the words “cancer victim” with “cancer survivor,” and bring about a different notion of the cancer experience. The founders envisioned an organization that would deal with the full spectrum of survivorship issues related to living with, through and beyond a cancer diagnosis. 1995: NCCS develops its Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability. This was the first report to approach quality cancer care for the patient/survivor perspective and provided the impetus that led to the creation of the National Cancer Institute’s Office of Cancer Survivorship in 1996. 2005 IOM report: The IOM and National Research Council 2005 report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommends that patients with cancer who are completing the first of course treatment be “provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained.” The recommendation suggested that these plans would help cancer survivors who may otherwise get “lost” in the transitions from the care they received during treatment through the phases of their life or stages of their disease course. 2015: Commission on Cancer Accreditation Committee requires implementation of Cancer Survivorship Care Plan to help improve communication, quality, and coordination of care for cancer survivors.  Recall statistics we just saw: increasing number of survivors who are living longer as cancer survivors. Today, cancer is often managed as a chronic condition. Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away.  A doctor may use the term controlled if tests or scans show that the cancer is not changing over time. Another way of defining control would be calling the disease stable. Cancers like this are watched closely to be sure that they don’t start growing. Most chronic cancers cannot be cured, but some can be controlled for months or even years. In fact, there’s always a chance that cancer will go into remission. Your doctor will talk to you about your treatment options. You may also decide to get a second opinion or get treated at a comprehensive cancer center that has more experience with your type of cancer. There may be clinical trials available, too. Some people get some of the same types of treatment that they had the first time (for instance, surgery or chemo), but some treatments may be less helpful as the cancer progresses. Treatment decisions are based on the type of disease, location of the cancer, amount of cancer, extent of spread, your overall health, and your personal wishes. Repeated recurrences, often with shorter time periods in between remissions, can become discouraging and exhausting. It can be even more discouraging if the cancer never goes away at all. The question of whether to keep treating cancer that doesn’t go away or comes back again and again is a valid one. Your choices about continuing treatment are personal and based on your needs, wishes, and abilities. There is no right or wrong decision on how to handle this phase of the illness. Still, it’s important to know that even those who are not cured of cancer may go on living for months or years, even though there may be changes in their lives. Many families adjust to this kind of treatment schedule. Having a cancer that cannot be cured does not put you beyond hope or help; you may be living with a disease that can be treated and controlled for a fairly long time. (ACS when cancer doesn’t go away)
9. Individual slides for each: 1960: 75% did not survive beyond 5 years and considered a “terminal illness” (list source) (ask Diane) 1985: Dr. Fitzhugh Mullan identified phases of survivorship in “Seasons of Survival” editorial IN NE Journal. 1986: NCCS was formed as an advocacy group for cancer survivors. 1995-1996: Landmark NCCS report leads to creation of OCS. 2005: IOM report “title” established standards of care for cancer survivors. 2015: Standard 3.3 Cancer Survivorship Care Plan required for all cancer patients 2015 and beyond: Cancer is now considered a “chronic condition” rather than a “terminal illness” Landmarks along the Way 1960: only 25% of cancer patients survived 5 years of more. About 68% of today’s cancer survivors were diagnosed with cancer five or more years ago.  And, approximately 15% of all cancer survivors were diagnosed 20 or more years ago. See: American Cancer Society. When Cancer Doesn’t Go Away. Accessed 1/27/15 http://www.cancer.org/treatment/survivorshipduringandaftertreatment/when-cancer-doesnt-go-away 1985: Dr. Fitzhugh Mullan writes editorial in New England Journal of Medicine re: his cancer experience that began when he was a 32 y.o. physician, husband, parent and son. First to describe survivorship and its phases that he called acute survival (starts w/diagnosis & extends through treatment), extended survival (remission and post-treatment) and permanent survival (evolves over time when know cancer is permanently arrested). Galvanized action on behalf of cancer survivors. 1986, the founders of National Coalition for Cancer Survivorship (NCCS) set out to establish an organization that replace the words “cancer victim” with “cancer survivor,” and bring about a different notion of the cancer experience. The founders envisioned an organization that would deal with the full spectrum of survivorship issues related to living with, through and beyond a cancer diagnosis. 1995: NCCS develops its Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability. This was the first report to approach quality cancer care for the patient/survivor perspective and provided the impetus that led to the creation of the National Cancer Institute’s Office of Cancer Survivorship in 1996. 2005 IOM report: The IOM and National Research Council 2005 report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommends that patients with cancer who are completing the first of course treatment be “provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained.” The recommendation suggested that these plans would help cancer survivors who may otherwise get “lost” in the transitions from the care they received during treatment through the phases of their life or stages of their disease course. 2015: Commission on Cancer Accreditation Committee requires implementation of Cancer Survivorship Care Plan to help improve communication, quality, and coordination of care for cancer survivors.  Recall statistics we just saw: increasing number of survivors who are living longer as cancer survivors. Today, cancer is often managed as a chronic condition. Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away.  A doctor may use the term controlled if tests or scans show that the cancer is not changing over time. Another way of defining control would be calling the disease stable. Cancers like this are watched closely to be sure that they don’t start growing. Most chronic cancers cannot be cured, but some can be controlled for months or even years. In fact, there’s always a chance that cancer will go into remission. Your doctor will talk to you about your treatment options. You may also decide to get a second opinion or get treated at a comprehensive cancer center that has more experience with your type of cancer. There may be clinical trials available, too. Some people get some of the same types of treatment that they had the first time (for instance, surgery or chemo), but some treatments may be less helpful as the cancer progresses. Treatment decisions are based on the type of disease, location of the cancer, amount of cancer, extent of spread, your overall health, and your personal wishes. Repeated recurrences, often with shorter time periods in between remissions, can become discouraging and exhausting. It can be even more discouraging if the cancer never goes away at all. The question of whether to keep treating cancer that doesn’t go away or comes back again and again is a valid one. Your choices about continuing treatment are personal and based on your needs, wishes, and abilities. There is no right or wrong decision on how to handle this phase of the illness. Still, it’s important to know that even those who are not cured of cancer may go on living for months or years, even though there may be changes in their lives. Many families adjust to this kind of treatment schedule. Having a cancer that cannot be cured does not put you beyond hope or help; you may be living with a disease that can be treated and controlled for a fairly long time. (ACS when cancer doesn’t go away)
10. Fatigue: Physical, emotional or mental exhaustion; most common; for months or years after treatment Emotional distress: Fear recurrence, anger, guilt, depression, anxiety, isolation, PTSD *loss of limb* Cognitive changes: learning, memory and attention difficulties Physical problems: Higher risk of serious infections Lymphatic: Lymphedema Reproductive: Hormonal changes  infertility (temporary or permanent), menopausal symptoms (women or men) or changes in menstrual periods Cardio-pulmonary: Asymptomatic heart problems or chest pain; increased risk of stroke; lung problems, like inflammation, difficulty breathing or less effective lung function GI: Tissue scarring  chronic pain & digestion problems; diarrhea  malabsorption & weight loss Dental/oral problems: Erosion of tooth enamel, gum disease Sensory-motor: Peripheral neuropathy (numbness in hands/feet); pain, phantom limb pain; cataracts; hearing loss Secondary cancers: New primary cancer or recurrence/metastasis of original cancer; damage to bone marrow myelodysplasia or acute leukemia (Source: Cancer.net/survivorship/long-term-side-effects-of-cancer-treatment) Social Disruptions: Family/friends, caregivers; workplace, finances and health insurance concerns
11. Survivors assume the role of “driver” and manage their survivorship journey The term self-management has become generally well defined as ―learning and practicing skills necessary to carry on an active and emotionally satisfying life in the face of a chronic condition” (Lorig, 1993; p. 11). The Macmillan Cancer Support self-management work stream of the National Cancer Survivorship Initiative (NCSI, 2009) has described cancer self-management as: “awareness and active participation by the person in their recovery, recuperation, and rehabilitation, to minimize the consequences of treatment, promote survival, health and well-being.” The work stream distinguishes self-management support as: “What health and social care professionals, and service delivery organizations to do support self-management.” Five Shifts in Care and Support for People Living with and Beyond Cancer (DH, Macmillan Cancer Support, and NHS Improvement, 2010) 1) A cultural shift in the approach to care and support for people affected by cancer – to a greater focus on recovery, health and well-being after treatment. 2) A shift towards assessment, information provision and personalized care planning - a shift away from a one-size fits all approach to follow-up to personalized care planning based on assessment of individual risks, needs and preferences. 3) A shift towards support for self-management - a shift away from clinically-led follow-up care to supported self-management, based on individual needs and preferences and with the appropriate clinical assessment, support, and treatment. 4) A shift away from a single model of clinical follow-up to tailored support that enables early recognition of and preparation for the consequences of treatment as well as early recognition of signs and symptoms of further disease. 5) A shift from an emphasis on measuring clinical activity to a new emphasis on measuring experience and outcomes for cancer survivors through the routine use of patient-reported outcome measures. Patient engagement in healthcare via self-management is widely recognized as crucial to improved outcomes for people with long-term chronic conditions (DH, 2010). With increased cancer survivorship, cancer in its chronic form, or with late consequences of treatment and co-morbidities, it is equally or even more crucial to cancer survivors. A collaborative and interactive relationship between patients and healthcare professionals empowers patients to take on responsibility for their condition with the appropriate clinical support. becoming “activated” and taking responsibility for their own contribution to improving their health and well-being outcomes, and being empowered to do so. A key component of effective self-management is the enhancement of self-efficacy (i.e. the confidence to use self-management skills successfully), based on Bandura‘s social cognitive theory. Methods for enhancing self-efficacy include: Mastery: success with self-management skills raises self-efficacy. Vicarious experience: seeing others succeeding in self-management increases personal self-efficacy. Verbal persuasion: positive feedback increases self-efficacy. Physiological feedback: subjective perceptions of physiological responses can alter self-efficacy. Professionals as experts, in control and patients as passive recipients Health literacy (i.e. to navigate the healthcare system, understand information, and access support when needed);
12. Survivors assume the role of “driver” and manage their survivorship journey The term self-management has become generally well defined as ―learning and practicing skills necessary to carry on an active and emotionally satisfying life in the face of a chronic condition” (Lorig, 1993; p. 11). The Macmillan Cancer Support self-management work stream of the National Cancer Survivorship Initiative (NCSI, 2009) has described cancer self-management as: “awareness and active participation by the person in their recovery, recuperation, and rehabilitation, to minimize the consequences of treatment, promote survival, health and well-being.” The work stream distinguishes self-management support as: “What health and social care professionals, and service delivery organizations to do support self-management.” Five Shifts in Care and Support for People Living with and Beyond Cancer (DH, Macmillan Cancer Support, and NHS Improvement, 2010) 1) A cultural shift in the approach to care and support for people affected by cancer – to a greater focus on recovery, health and well-being after treatment. 2) A shift towards assessment, information provision and personalized care planning - a shift away from a one-size fits all approach to follow-up to personalized care planning based on assessment of individual risks, needs and preferences. 3) A shift towards support for self-management - a shift away from clinically-led follow-up care to supported self-management, based on individual needs and preferences and with the appropriate clinical assessment, support, and treatment. 4) A shift away from a single model of clinical follow-up to tailored support that enables early recognition of and preparation for the consequences of treatment as well as early recognition of signs and symptoms of further disease. 5) A shift from an emphasis on measuring clinical activity to a new emphasis on measuring experience and outcomes for cancer survivors through the routine use of patient-reported outcome measures. Patient engagement in healthcare via self-management is widely recognized as crucial to improved outcomes for people with long-term chronic conditions (DH, 2010). With increased cancer survivorship, cancer in its chronic form, or with late consequences of treatment and co-morbidities, it is equally or even more crucial to cancer survivors. A collaborative and interactive relationship between patients and healthcare professionals empowers patients to take on responsibility for their condition with the appropriate clinical support. becoming “activated” and taking responsibility for their own contribution to improving their health and well-being outcomes, and being empowered to do so. A key component of effective self-management is the enhancement of self-efficacy (i.e. the confidence to use self-management skills successfully), based on Bandura‘s social cognitive theory. Methods for enhancing self-efficacy include: Mastery: success with self-management skills raises self-efficacy. Vicarious experience: seeing others succeeding in self-management increases personal self-efficacy. Verbal persuasion: positive feedback increases self-efficacy. Physiological feedback: subjective perceptions of physiological responses can alter self-efficacy. Professionals as experts, in control and patients as passive recipients Health literacy (i.e. to navigate the healthcare system, understand information, and access support when needed);
13. Survivors assume the role of “driver” and manage their survivorship journey The term self-management has become generally well defined as ―learning and practicing skills necessary to carry on an active and emotionally satisfying life in the face of a chronic condition” (Lorig, 1993; p. 11). The Macmillan Cancer Support self-management work stream of the National Cancer Survivorship Initiative (NCSI, 2009) has described cancer self-management as: “awareness and active participation by the person in their recovery, recuperation, and rehabilitation, to minimize the consequences of treatment, promote survival, health and well-being.” The work stream distinguishes self-management support as: “What health and social care professionals, and service delivery organizations to do support self-management.” Five Shifts in Care and Support for People Living with and Beyond Cancer (DH, Macmillan Cancer Support, and NHS Improvement, 2010) 1) A cultural shift in the approach to care and support for people affected by cancer – to a greater focus on recovery, health and well-being after treatment. 2) A shift towards assessment, information provision and personalized care planning - a shift away from a one-size fits all approach to follow-up to personalized care planning based on assessment of individual risks, needs and preferences. 3) A shift towards support for self-management - a shift away from clinically-led follow-up care to supported self-management, based on individual needs and preferences and with the appropriate clinical assessment, support, and treatment. 4) A shift away from a single model of clinical follow-up to tailored support that enables early recognition of and preparation for the consequences of treatment as well as early recognition of signs and symptoms of further disease. 5) A shift from an emphasis on measuring clinical activity to a new emphasis on measuring experience and outcomes for cancer survivors through the routine use of patient-reported outcome measures. Patient engagement in healthcare via self-management is widely recognized as crucial to improved outcomes for people with long-term chronic conditions (DH, 2010). With increased cancer survivorship, cancer in its chronic form, or with late consequences of treatment and co-morbidities, it is equally or even more crucial to cancer survivors. A collaborative and interactive relationship between patients and healthcare professionals empowers patients to take on responsibility for their condition with the appropriate clinical support. becoming “activated” and taking responsibility for their own contribution to improving their health and well-being outcomes, and being empowered to do so. A key component of effective self-management is the enhancement of self-efficacy (i.e. the confidence to use self-management skills successfully), based on Bandura‘s social cognitive theory. Methods for enhancing self-efficacy include: Mastery: success with self-management skills raises self-efficacy. Vicarious experience: seeing others succeeding in self-management increases personal self-efficacy. Verbal persuasion: positive feedback increases self-efficacy. Physiological feedback: subjective perceptions of physiological responses can alter self-efficacy. Professionals as experts, in control and patients as passive recipients Health literacy (i.e. to navigate the healthcare system, understand information, and access support when needed);
14. Survivors assume the role of “driver” and manage their survivorship journey The term self-management has become generally well defined as ―learning and practicing skills necessary to carry on an active and emotionally satisfying life in the face of a chronic condition” (Lorig, 1993; p. 11). The Macmillan Cancer Support self-management work stream of the National Cancer Survivorship Initiative (NCSI, 2009) has described cancer self-management as: “awareness and active participation by the person in their recovery, recuperation, and rehabilitation, to minimize the consequences of treatment, promote survival, health and well-being.” The work stream distinguishes self-management support as: “What health and social care professionals, and service delivery organizations to do support self-management.” Five Shifts in Care and Support for People Living with and Beyond Cancer (DH, Macmillan Cancer Support, and NHS Improvement, 2010) 1) A cultural shift in the approach to care and support for people affected by cancer – to a greater focus on recovery, health and well-being after treatment. 2) A shift towards assessment, information provision and personalized care planning - a shift away from a one-size fits all approach to follow-up to personalized care planning based on assessment of individual risks, needs and preferences. 3) A shift towards support for self-management - a shift away from clinically-led follow-up care to supported self-management, based on individual needs and preferences and with the appropriate clinical assessment, support, and treatment. 4) A shift away from a single model of clinical follow-up to tailored support that enables early recognition of and preparation for the consequences of treatment as well as early recognition of signs and symptoms of further disease. 5) A shift from an emphasis on measuring clinical activity to a new emphasis on measuring experience and outcomes for cancer survivors through the routine use of patient-reported outcome measures. Patient engagement in healthcare via self-management is widely recognized as crucial to improved outcomes for people with long-term chronic conditions (DH, 2010). With increased cancer survivorship, cancer in its chronic form, or with late consequences of treatment and co-morbidities, it is equally or even more crucial to cancer survivors. A collaborative and interactive relationship between patients and healthcare professionals empowers patients to take on responsibility for their condition with the appropriate clinical support. becoming “activated” and taking responsibility for their own contribution to improving their health and well-being outcomes, and being empowered to do so. A key component of effective self-management is the enhancement of self-efficacy (i.e. the confidence to use self-management skills successfully), based on Bandura‘s social cognitive theory. Methods for enhancing self-efficacy include: Mastery: success with self-management skills raises self-efficacy. Vicarious experience: seeing others succeeding in self-management increases personal self-efficacy. Verbal persuasion: positive feedback increases self-efficacy. Physiological feedback: subjective perceptions of physiological responses can alter self-efficacy. Professionals as experts, in control and patients as passive recipients Health literacy (i.e. to navigate the healthcare system, understand information, and access support when needed);
15. Introduction & Welcome Ask to tell overview of their cancer story. Ask about their experience of the importance of the survivorship concept. SEGUE It is important ACOS believes so strongly that they’ve made it mandatory for all hospital providers of oncology care to follow this as a standard of practice for all cancer patients. Let’s look at that standard.
16. The purpose of this standard is to have cancer programs (in hospitals and cancer centers) develop and implement a process to monitor the dissemination of a survivorship care plan as a part of the standard care of patients with cancer. Responsibilities of Hospital’s Cancer Committee Design care plan: decide on written or electronic format (evidence-based websites that are good resources for templates include-American Society of Clinical Oncology, National Coalition for CA Survivorship, Livestrong Foundation are good resources for SCP templates) incorporating evidence-based standards of care for follow-up (use of IOM Fact Sheet: Cancer SCP is one good strategy) Appoint a designee, principal providers who coordinated cancer treatment (treating physician(s) or advanced practice partner such as an APRN nurse navigator) who will document all methods used (registry data may help filling in treatment information), distribute to patient, ensure patient understands the plan, purpose and use, The process is implemented, monitored, evaluated, and presented annually to the cancer committee. The presentation is documented in minutes and compliance is reviewed when the organization is accredited by the Commission on Cancer. PROCESS REQUIREMENTS (a) A survivorship care plan is prepared by the principal provider(s) who coordinated the oncology treatment for the patient with input from the patient’s other care providers. (b) The survivorship care plan is given to the patient on completion of treatment. (c) The written or electronic survivorship care plan contains a record of care received, important disease characteristics, and a follow-up care plan incorporating available and recognized evidence-based standards of care, when available. The minimum care plan standards are included in the Fact Sheet: Cancer Survivorship Care Planning, from the IOM. Additional resources are available to assist programs with the development of these tools, including care planning templates. Care planning templates are available from, for example, the American Society of Clinical Oncology, National Coalition for Cancer Survivorship, and the Lance Armstrong Foundation. (d) During on-site accreditation visit, the surveyor will discuss with the cancer committee the methods implemented to create and disseminate a survivorship care plan. MSKCC Questions To Be Considered When Implementing Care Plans How will the treatment data be collected and from where? Who will be responsible for collecting and entering the data? What resources will be needed? What the services will be included in the follow-up care? What guidelines will be followed for surveillance? What patient groups will be included? When is the most appropriate time to review the survivorship care plan with patients — at the end of treatment or sometime later? Should there be a formal transition visit? Who will receive the care plan? Will the care plan be stored electronically? Will the care plan be periodically updated?
17. Who? Writer: Principal providers who coordinated cancer treatment (treating physician(s) or advanced practice partner such as an APRN nurse navigator) Owner: Patient who has completed treatment When? At the completion of active treatment What? Essential Components: ASCO data set will be minimal content for treatment summary & SCP The core set of data elements, as recommended by ASCO, (9/9/14) are: TREATMENT SUMMARY Contact information of the treating institutions and provider Specific diagnosis (e.g. breast cancer), including histologic subtype (e.g. non-small cell lung cancer) if relevant Stage of disease at diagnosis (e.g. I-III) Surgery (yes/no). If yes, a. Surgical procedure with location on the body b. Date(s) of surgery (year required, month optional, day not required) Chemotherapy (yes/no). If yes, a. Names of systemic therapy agents administered  (listing individual names rather than regimens)b. End date(s) of chemotherapy treatment (year required, month optional, day not required) Radiation (yes/no). If yes, c. Anatomical area treated by radiationd. End date(s) of radiation treatment (year required, month optional, day not required) Ongoing toxicity or side-effects of all treatments received (including those from surgery, systemic therapy and/or radiation) at the completion of treatment. Any information concerning the likely course of recovery from these toxicities should also be covered. For selected cancers, genetic/hereditary risk factor(s) or predisposing conditions and genetic testing results if performed FOLLOW-UP CARE PLAN Oncology team member contacts with location of the treatment facility  [repeat if separate document] Need for ongoing adjuvant therapy for cancera. Adjuvant therapy nameb. Planned durationc. Expected side effects Schedule of follow up related clinical visits (to be presented in table format to include who will provide the follow-up visit and how often and where this will take place) Cancer surveillance tests for recurrence (to be presented in table format to include who is responsible for ordering/carrying out the test, the frequency of testing, and where this will take place) Cancer screening for early detection of new primaries – to be included only if different from the general population (presented in table format to include who is responsible for carrying out, the frequency of testing, and where this will take place) Other periodic testing and examinations (rather than outlining specific testing, the group suggested an inclusion of a general statement to "continue all standard non-cancer related health care with your primary care provider, with the following exceptions: [if there are any]") Possible symptoms of cancer recurrence (rather than including a list of possible symptoms, the group suggested inclusion of a general statement, "Any new, unusual and/or persistent symptoms should be brought to the attention of your provider.") A list of likely or rare but clinically significant late- and/or long-term effects that a survivor may experience based on his or her individual diagnosis and treatment if known (including symptoms that may indicate the presence of such conditions).  A list of items (e.g. emotional or mental health, parenting, work/employment, financial issues, and insurance) should be covered with standard language stating that survivors have experienced issues in these areas and that the patient should speak with his or her oncologist and/or PCP if having related concerns. Include a list of local and national resources to assist the patient obtain proper services. A general statement emphasizing the importance of healthy diet, exercise, smoking cessation and alcohol use reduction may be included.  Statements may be tailored if particularly pertinent to the individual.   MSKCC Elements of a Survivorship Care Plan Treatment Summary Details of the cancer diagnosis Diagnosis date Type of cancer Location Stage Histology Names and contact information of the providers and treatment facilities Treatments administered Chemotherapy/biotherapy — regimen, drug, dose, cycles; clinical trial information Radiation — type, dose, site Surgery — procedure Follow-up Plan Specific recommendations for ongoing care Schedule of visits with oncology specialist Surveillance testing for recurrence Identify and manage long-term and late effects Health promotional strategies Smoking cessation Alcohol and dietary modifications Regular weight-bearing exercise
18. Who? Writer: Principal providers who coordinated cancer treatment (treating physician(s) or advanced practice partner such as an APRN nurse navigator) Owner: Patient who has completed treatment When? At the completion of active treatment What? Essential Components: ASCO data set will be minimal content for treatment summary & SCP The core set of data elements, as recommended by ASCO, (9/9/14) are: TREATMENT SUMMARY Contact information of the treating institutions and provider Specific diagnosis (e.g. breast cancer), including histologic subtype (e.g. non-small cell lung cancer) if relevant Stage of disease at diagnosis (e.g. I-III) Surgery (yes/no). If yes, a. Surgical procedure with location on the body b. Date(s) of surgery (year required, month optional, day not required) Chemotherapy (yes/no). If yes, a. Names of systemic therapy agents administered  (listing individual names rather than regimens)b. End date(s) of chemotherapy treatment (year required, month optional, day not required) Radiation (yes/no). If yes, c. Anatomical area treated by radiationd. End date(s) of radiation treatment (year required, month optional, day not required) Ongoing toxicity or side-effects of all treatments received (including those from surgery, systemic therapy and/or radiation) at the completion of treatment. Any information concerning the likely course of recovery from these toxicities should also be covered. For selected cancers, genetic/hereditary risk factor(s) or predisposing conditions and genetic testing results if performed FOLLOW-UP CARE PLAN Oncology team member contacts with location of the treatment facility  [repeat if separate document] Need for ongoing adjuvant therapy for cancera. Adjuvant therapy nameb. Planned durationc. Expected side effects Schedule of follow up related clinical visits (to be presented in table format to include who will provide the follow-up visit and how often and where this will take place) Cancer surveillance tests for recurrence (to be presented in table format to include who is responsible for ordering/carrying out the test, the frequency of testing, and where this will take place) Cancer screening for early detection of new primaries – to be included only if different from the general population (presented in table format to include who is responsible for carrying out, the frequency of testing, and where this will take place) Other periodic testing and examinations (rather than outlining specific testing, the group suggested an inclusion of a general statement to "continue all standard non-cancer related health care with your primary care provider, with the following exceptions: [if there are any]") Possible symptoms of cancer recurrence (rather than including a list of possible symptoms, the group suggested inclusion of a general statement, "Any new, unusual and/or persistent symptoms should be brought to the attention of your provider.") A list of likely or rare but clinically significant late- and/or long-term effects that a survivor may experience based on his or her individual diagnosis and treatment if known (including symptoms that may indicate the presence of such conditions).  A list of items (e.g. emotional or mental health, parenting, work/employment, financial issues, and insurance) should be covered with standard language stating that survivors have experienced issues in these areas and that the patient should speak with his or her oncologist and/or PCP if having related concerns. Include a list of local and national resources to assist the patient obtain proper services. A general statement emphasizing the importance of healthy diet, exercise, smoking cessation and alcohol use reduction may be included.  Statements may be tailored if particularly pertinent to the individual.   MSKCC Elements of a Survivorship Care Plan Treatment Summary Details of the cancer diagnosis Diagnosis date Type of cancer Location Stage Histology Names and contact information of the providers and treatment facilities Treatments administered Chemotherapy/biotherapy — regimen, drug, dose, cycles; clinical trial information Radiation — type, dose, site Surgery — procedure Follow-up Plan Specific recommendations for ongoing care Schedule of visits with oncology specialist Surveillance testing for recurrence Identify and manage long-term and late effects Health promotional strategies Smoking cessation Alcohol and dietary modifications Regular weight-bearing exercise
19. Who? Writer: Principal providers who coordinated cancer treatment (treating physician(s) or advanced practice partner such as an APRN nurse navigator) Owner: Patient who has completed treatment When? At the completion of active treatment What? Essential Components: ASCO data set will be minimal content for treatment summary & SCP The core set of data elements, as recommended by ASCO, (9/9/14) are: TREATMENT SUMMARY Contact information of the treating institutions and provider Specific diagnosis (e.g. breast cancer), including histologic subtype (e.g. non-small cell lung cancer) if relevant Stage of disease at diagnosis (e.g. I-III) Surgery (yes/no). If yes, a. Surgical procedure with location on the body b. Date(s) of surgery (year required, month optional, day not required) Chemotherapy (yes/no). If yes, a. Names of systemic therapy agents administered  (listing individual names rather than regimens)b. End date(s) of chemotherapy treatment (year required, month optional, day not required) Radiation (yes/no). If yes, c. Anatomical area treated by radiationd. End date(s) of radiation treatment (year required, month optional, day not required) Ongoing toxicity or side-effects of all treatments received (including those from surgery, systemic therapy and/or radiation) at the completion of treatment. Any information concerning the likely course of recovery from these toxicities should also be covered. For selected cancers, genetic/hereditary risk factor(s) or predisposing conditions and genetic testing results if performed FOLLOW-UP CARE PLAN Oncology team member contacts with location of the treatment facility  [repeat if separate document] Need for ongoing adjuvant therapy for cancera. Adjuvant therapy nameb. Planned durationc. Expected side effects Schedule of follow up related clinical visits (to be presented in table format to include who will provide the follow-up visit and how often and where this will take place) Cancer surveillance tests for recurrence (to be presented in table format to include who is responsible for ordering/carrying out the test, the frequency of testing, and where this will take place) Cancer screening for early detection of new primaries – to be included only if different from the general population (presented in table format to include who is responsible for carrying out, the frequency of testing, and where this will take place) Other periodic testing and examinations (rather than outlining specific testing, the group suggested an inclusion of a general statement to "continue all standard non-cancer related health care with your primary care provider, with the following exceptions: [if there are any]") Possible symptoms of cancer recurrence (rather than including a list of possible symptoms, the group suggested inclusion of a general statement, "Any new, unusual and/or persistent symptoms should be brought to the attention of your provider.") A list of likely or rare but clinically significant late- and/or long-term effects that a survivor may experience based on his or her individual diagnosis and treatment if known (including symptoms that may indicate the presence of such conditions).  A list of items (e.g. emotional or mental health, parenting, work/employment, financial issues, and insurance) should be covered with standard language stating that survivors have experienced issues in these areas and that the patient should speak with his or her oncologist and/or PCP if having related concerns. Include a list of local and national resources to assist the patient obtain proper services. A general statement emphasizing the importance of healthy diet, exercise, smoking cessation and alcohol use reduction may be included.  Statements may be tailored if particularly pertinent to the individual.   MSKCC Elements of a Survivorship Care Plan Treatment Summary Details of the cancer diagnosis Diagnosis date Type of cancer Location Stage Histology Names and contact information of the providers and treatment facilities Treatments administered Chemotherapy/biotherapy — regimen, drug, dose, cycles; clinical trial information Radiation — type, dose, site Surgery — procedure Follow-up Plan Specific recommendations for ongoing care Schedule of visits with oncology specialist Surveillance testing for recurrence Identify and manage long-term and late effects Health promotional strategies Smoking cessation Alcohol and dietary modifications Regular weight-bearing exercise
20. Who? Writer: Principal providers who coordinated cancer treatment (treating physician(s) or advanced practice partner such as an APRN nurse navigator) Owner: Patient who has completed treatment When? At the completion of active treatment What? Essential Components: ASCO data set will be minimal content for treatment summary & SCP The core set of data elements, as recommended by ASCO, (9/9/14) are: TREATMENT SUMMARY Contact information of the treating institutions and provider Specific diagnosis (e.g. breast cancer), including histologic subtype (e.g. non-small cell lung cancer) if relevant Stage of disease at diagnosis (e.g. I-III) Surgery (yes/no). If yes, a. Surgical procedure with location on the body b. Date(s) of surgery (year required, month optional, day not required) Chemotherapy (yes/no). If yes, a. Names of systemic therapy agents administered  (listing individual names rather than regimens)b. End date(s) of chemotherapy treatment (year required, month optional, day not required) Radiation (yes/no). If yes, c. Anatomical area treated by radiationd. End date(s) of radiation treatment (year required, month optional, day not required) Ongoing toxicity or side-effects of all treatments received (including those from surgery, systemic therapy and/or radiation) at the completion of treatment. Any information concerning the likely course of recovery from these toxicities should also be covered. For selected cancers, genetic/hereditary risk factor(s) or predisposing conditions and genetic testing results if performed FOLLOW-UP CARE PLAN Oncology team member contacts with location of the treatment facility  [repeat if separate document] Need for ongoing adjuvant therapy for cancera. Adjuvant therapy nameb. Planned durationc. Expected side effects Schedule of follow up related clinical visits (to be presented in table format to include who will provide the follow-up visit and how often and where this will take place) Cancer surveillance tests for recurrence (to be presented in table format to include who is responsible for ordering/carrying out the test, the frequency of testing, and where this will take place) Cancer screening for early detection of new primaries – to be included only if different from the general population (presented in table format to include who is responsible for carrying out, the frequency of testing, and where this will take place) Other periodic testing and examinations (rather than outlining specific testing, the group suggested an inclusion of a general statement to "continue all standard non-cancer related health care with your primary care provider, with the following exceptions: [if there are any]") Possible symptoms of cancer recurrence (rather than including a list of possible symptoms, the group suggested inclusion of a general statement, "Any new, unusual and/or persistent symptoms should be brought to the attention of your provider.") A list of likely or rare but clinically significant late- and/or long-term effects that a survivor may experience based on his or her individual diagnosis and treatment if known (including symptoms that may indicate the presence of such conditions).  A list of items (e.g. emotional or mental health, parenting, work/employment, financial issues, and insurance) should be covered with standard language stating that survivors have experienced issues in these areas and that the patient should speak with his or her oncologist and/or PCP if having related concerns. Include a list of local and national resources to assist the patient obtain proper services. A general statement emphasizing the importance of healthy diet, exercise, smoking cessation and alcohol use reduction may be included.  Statements may be tailored if particularly pertinent to the individual.   MSKCC Elements of a Survivorship Care Plan Treatment Summary Details of the cancer diagnosis Diagnosis date Type of cancer Location Stage Histology Names and contact information of the providers and treatment facilities Treatments administered Chemotherapy/biotherapy — regimen, drug, dose, cycles; clinical trial information Radiation — type, dose, site Surgery — procedure Follow-up Plan Specific recommendations for ongoing care Schedule of visits with oncology specialist Surveillance testing for recurrence Identify and manage long-term and late effects Health promotional strategies Smoking cessation Alcohol and dietary modifications Regular weight-bearing exercise
21. 2005 IOM Report: Cancer patients not educated: Long-term side effects of treatment Possible recurrences Surveillance methods & screenings Survivorship phase Monitoring & promoting life-time follow-up is A MUST! As in Trip Planning, don’t leave home without it! You need Awareness & Knowledge about: Destination: Survivorship phase GPS: Surveillance methods & screenings Danger signs: Long-term side effects of treatment Detours: Possible recurrences Late effects of cancer treatment  Care plan to document treatment Ask doctor for advice: Record treatments I’ve received Am I at risk for special late effects? What other specialists (e.g. cardiologist or endocrinologist) should I see to monitor potential late effects? Should I watch for any signs or symptoms of late effects? Source: Cancer.net/survivorship/long-term-side-effects-of-cancer-treatment
22. How have you used a SCP? How has it made a difference in your life or the lives of others you know? How important has having a plan of care has been to you and your family caregivers? What are pitfalls or possible barriers to success? How would you recommend preventing or resolving problems with the SCP?
23. Benefits for Professionals Oncologists Primary care providers Nurses Social workers Home care aides Clinical Information for other physicians Primary care providers are not as well informed about the needs of cancer survivors as are oncology specialists. A survivorship care plan is the record of a patient's cancer history and recommendations for follow-up care. The plan should define responsibilities of cancer-related, non-cancer-related, and psychosocial providers. Clear designation of who is responsible for the various aspects of care can optimize care coordination, avoid unnecessary use of resources, and ensure that care does not “fall through the cracks.” Patients should be encouraged to provide a copy of the care plan to their primary care providers and other healthcare providers throughout life. (MSKCC) Health disparities information to help all professionals recognize & address these Nearly 14 million survivors in the United States. People are living longer after a cancer diagnosis because of advances in early detection and treatment. About two out of every three people diagnosed with cancer are expected to live at least five years after diagnosis, but disparities in health care impact survival. Low-income men and women and members of minority groups who have little or no health insurance coverage are more likely to be diagnosed with cancer at later stages, when survival times are shorter. According to the ACS, populations that need special attention: Medically underserved such as racial/ethnic minorities; uninsured or underinsures, rural and elderly patients. Help for Uninsured: http://www.cdc.gov/cancer/survivorship/uninsured.htm SEGUE Let’s look now, at specifics about several SCP’s.
24. Benefits for Professionals Oncologists Primary care providers Nurses Social workers Home care aides Clinical Information for other physicians Primary care providers are not as well informed about the needs of cancer survivors as are oncology specialists. A survivorship care plan is the record of a patient's cancer history and recommendations for follow-up care. The plan should define responsibilities of cancer-related, non-cancer-related, and psychosocial providers. Clear designation of who is responsible for the various aspects of care can optimize care coordination, avoid unnecessary use of resources, and ensure that care does not “fall through the cracks.” Patients should be encouraged to provide a copy of the care plan to their primary care providers and other healthcare providers throughout life. (MSKCC) Health disparities information to help all professionals recognize & address these Nearly 14 million survivors in the United States. People are living longer after a cancer diagnosis because of advances in early detection and treatment. About two out of every three people diagnosed with cancer are expected to live at least five years after diagnosis, but disparities in health care impact survival. Low-income men and women and members of minority groups who have little or no health insurance coverage are more likely to be diagnosed with cancer at later stages, when survival times are shorter. According to the ACS, populations that need special attention: Medically underserved such as racial/ethnic minorities; uninsured or underinsures, rural and elderly patients. Help for Uninsured: http://www.cdc.gov/cancer/survivorship/uninsured.htm SEGUE Let’s look now, at specifics about several SCP’s.
25.  In response to the 2006 Institute of Medicine report, many groups have now developed various types of "care plans" to help improve the quality of care of survivors as they move beyond their cancer treatment. ACS Provides easy links to several Survivorship Care Plans that include guidelines for monitoring and maintaining survivors’ health. Easiest way for you to compare plans is to search “Survivorship Care Plans landing” on the ACS website.
26. 24-page booklet, nicely laid-out with plenty of space to write in the information
27. For Professionals The Survivorship Care Plan Builder is a free, award-winning tool for oncology professionals. It will help you quickly make individualized Survivorship Care Plans for your patients. How It Works The Survivorship Care Plan Builder works by creating a unique Survivorship Care Plan for each patient that can then be printed out, emailed and/or stored electronically. Survivorship Care Plans will include: Contact information for the patient's care team (this is important for coordinating care) Background information on the patient’s diagnosis and medical history Treatment summary Follow-up care schedule, referrals and other recommendations for future care Assessment of the patient's ongoing concerns and suggested interventions Factsheets from the Survivorship Library on what to expect after treatment, guidelines for care and managing ongoing symptoms Advantages The Survivorship Care Plan Builder is: Secure Easy-to-use In sync with the Institute of Medicine (IOM) and Commission on Cancer (CoC) recommendations on survivorship care May be able to fill in about 60% of Care Plan information by importing patient data from your registry. There is assistance for enabling this transfer of information. Fully customizable Fully tested and regularly updated based on user feedback Free technical support From Cancer Patient to Cancer Survivor: Lost in Transition A short film/video on YouTube by the Institute of Medicine about the problems that come up after cancer patients successfully end treatment and look into follow up.
28. categories on the tool General Information Dates prepared/updated Name/dobirth/sex Diagnosis/date Sx at presentation Date completed therapy/Initial stage and disease site(s) History of Cancer Treatment Surgery: Surgeon’s name/contact info Date/procedure/pathology Radiation Therapy: RadOnc’s name/contact info Date range/type/field/dose Chemotherapy/biotherapy/hormone therapy/targeted therapies: MedOnc’s name/contact info Regimen1.2, etc./Cycles1,2, etc./Clinical trial?/Date range/Agents received Transplantation: Autologous/allogenic stem cells Dates/donor information, if applicable Other interventions Vascular access device: yes-no/Type/Insertion and removal dates Significant events during treatment Weight gain/loss>10 lbs./CPR event/Hemorrhagic cystitis Psychosocial events needing treatment: Depression/Anxiety/other Grade III or IV toxicities Other active health problems Recent disease evaluation: Findings
29. Cancer Therapy Treatment Summary Demographic Information Name: Joe Smith Date of Birth: 11/15/1945 Cancer diagnosis/ type: Rectal cancer Date of diagnosis: 1/2/2009 Diagnosis given by: Dr. Jones Cancer therapies Type of surgery: Transabdominal resection and lymph node dissection Date of surgery: 3/25/2009 Surgeon: Dr. Rosato Performed at: Hospital of the University of Pennsylvania Pathology Findings Tumor type: Adenocarcimona Staging: T 3 N 1 M 0 Stage: IIIB Relevant pathology findings: Grade 2, all margins clear Lymph node status: 2/15 lymph nodes positive for cancer Initial work-up abnormalities: Tumor found on colonoscopy done due to anemia CEA at diagnosis 42, liver function tests normal, CT scans show no evidence of metastases Medical Therapy Administered by: Dr. Weijing Sun / Nurse Suzy Miller   Medication Dose & Route Planned Schedule Dates given / any dose reduction Oxaliplatin (FOLFOX) 85 mg/m2 Given IV on day 1 Every 2 weeks x 12 cycles 4/27/09-9/12/09   Last 2 doses reduced by 25% due to neuropathy 5-FU (with leucovorin) 400 mg/m2 Given IV on day 1 & 2   Leukovorin 200mg/m2 Same 4/27-9/12/09 5-FU 600 mg/m2   Given IV over 22 hours on days 1 & 2 Same Same 5-FU given with radiation therapy prior to surgery   1/5-2/9/09 As okanned   Notes about medical treatment Was the treatment planned changed, if so, why? Dose reduced due to neuropathy List any major side effects of medical therapy Neuropathy requiring dose reduction and treatment with gabapentin for 1 year. Radiation Therapy Radiation therapy plan Physician: Dr. Metz Type of radiation therapy: 3D conformal radiation Area in treatment field: tumor bed, presacral and internal iliac nodes Total planned dose: 45 Gy Total dose received: 45Gy Total number of planned fractions (sessions): 25 Date radiation therapy started: 1/5/09 Date completed: 2/9/09 Any notable side effects: Diarrhea, skin toxicity. No doses missed or delayed. Oncology Team Contacts Provider: Dr. Rosato Phone: 215-662-2033 Address: HUP, 4 Silverstein Nurse Sally Fernandez, CRNP Provider: Dr. Metz Phone: 215-349-5570 Address: HUP, CAM Ground Floor Provider: Dr. Sun Phone: 215-662-6319 Address: HUP, CAM 4 Nurse: Lori Harmer, CRNP Other therapy received: Notes about treatment:
30. Livestrong Care Plan This free and easy to use program provides adult cancer survivors with information regarding the health risks they face as a result of cancer therapies. It is important to distinguish the Care Plan from a treatment summary, which is used to provide the patient and other healthcare providers with information about surgery information, pathology results, chemotherapy and radiation treatment plans and courses, including doses. Though this Care Plan is not a treatment summary, the site provides a link to a downloadable treatment summary template for creatin this document for your records. Do I need to register?No, the program is free to use, and requires no registration. Just follow this link. Is there an example of a completed care plan I can view?Yes, click to view an example of a completed care plan. The one I saw was 14 pages long with sections on: What you were treated for. Suggestions on coordinating your care Risks related to medications you took Possible long term side effects of radiation or surgery for various parts of your body/practical considerations and where to find answers to your questions Guidance on healthy living after cancer Recommendations on follow-up care and screenings Discussion of life after cancer and links to Survivorship Clinic List What is the "Primary Care Summary"?The primary care summary is a short summary and a bullet point list of the recommendations in the patient's care plan, which the patient can share with their primary care team or other healthcare provider involved in their care. Where does the information in the plan come from?All the information provided in the plan comes from the medical literature, established practice guidelines or the recommendations of experts in the survivorship field. How does this care plan get created? This program was originally created with the survivor as the primary user, though this has changed over time. It can be completed by a patient or a family member. Livestrong also wants the care plan to be a useful resource to help professionals oncology clinics around the world meet the needs of their cancer survivors. It can be completed by HCPs without the patient present, while some choose do it with the patient present. Go online to complete the care plan. It takes an average 7-10 minutes for survivors to complete; takes health care providers an average 4-5 minutes to complete. Whoever completes the plan, unfortunately, you cannot save plans in progress. They must be completed in one sitting because they do not want to store a patient's treatment information. What is the best way to view the plan?The plan can be printed as it appears online, or converted to a PDF and saved on your computer. We recommend using the PDF feature if you want to save a copy, because this allows you to use the links to other websites included in the plan. However, the plan is best viewed online, as this maintains the layout of the plan, with the material broken down into more manageable sections. What do you do with the user's answers to the questionnaire?The University of PA collects the answers to conduct ongoing cancer research, and to guide periodic improvements to the program. All answers are kept confidential and are used in de-identified aggregate data form.
31. Also from the Lance Armstrong Foundation Living after Cancer Treatment Brochure Series This collection introduces survivorship in a way that is culturally relevant, user-friendly, easy to read, and FREE of charge. The brochures raise awareness of the physical, practical and emotional concerns of cancer survivors; they list resources and encourage survivors to seek support.   Each brochure is an adaptation of the general, Multi-Cultural brochure; containing the same basic content, each version is adapted to be culturally relevant to the needs of a specific audience: African American, Hispanic, Native American, Adolescent/Young Adult, Appalachian, Asian American, Pacific Islander, Arabic, Chinese, Vietnamese, and the LGBT communities.
32. From Cancer Patient to Cancer Survivor: Lost in Transition A 17 minute film/video on YouTube by the Institute of Medicine about the problems that come up after cancer patients successfully end treatment and look into follow up. A great tool for professionals who want to address survivorship issues with their patients.
33. 2 slidesl Lack of clarity Need tools, facts, help Lack time/human resources/health disparities Lack of proven outcomes “I have nothing to offer. Clinician/caregiver roles Barriers to SCP Implementation The published implementation date for Standard 3.3 is January 1, 2015. Late summer of 2013, the CoC Member Organizations conducted a readiness survey that asked CoC-accredited programs to report their implementation activities: Only 37 percent of responding cancer programs felt "completely confident" that their program would be able to implement Standard 3.3 by 2015 60 percent not addressing the entire standard and help was needed in the following areas: information about how to evaluate survivorship care plan processes, Tools that could be used for a comprehensive care plan and follow-up plan, additional information about what is required to successfully implement [the Standard], and recommendations for organizations that could help them implement the Standard only 21 percent indicated that a survivorship care plan process has been developed. 63 percent believed that Standard 3.3 is the most difficult to implement, compared to Standard 3.1 and 3.2. As practices and cancer centers around the country have undertaken SCP implementation efforts, myriad barriers to their preparation and delivery have emerged, with time and human resource burden top among these, in addition to a lack of proven outcomes. Fortunately, a growing number of publications document practical and feasible delivery models, and an increasingly robust body of research on stakeholder preferences is available to focus SCP implementation efforts. Memorial-Sloane Kettering Cancer Center http://www.mskcc.org/cancer-care/survivorship/survivorship-care-plan Clarify these items: Questions To Be Considered When Implementing Care Plans How will the treatment data be collected and from where? Who will be responsible for collecting and entering the data? What resources will be needed? What the services will be included in the follow-up care? What guidelines will be followed for surveillance? What patient groups will be included? When is the most appropriate time to review the survivorship care plan with patients — at the end of treatment or sometime later? Should there be a formal transition visit? Who will receive the care plan? Will the care plan be stored electronically? Will the care plan be periodically updated?
34. 2 slidesl Lack of clarity Need tools, facts, help Lack time/human resources/health disparities Lack of proven outcomes “I have nothing to offer. Clinician/caregiver roles Barriers to SCP Implementation The published implementation date for Standard 3.3 is January 1, 2015. Late summer of 2013, the CoC Member Organizations conducted a readiness survey that asked CoC-accredited programs to report their implementation activities: Only 37 percent of responding cancer programs felt "completely confident" that their program would be able to implement Standard 3.3 by 2015 60 percent not addressing the entire standard and help was needed in the following areas: information about how to evaluate survivorship care plan processes, Tools that could be used for a comprehensive care plan and follow-up plan, additional information about what is required to successfully implement [the Standard], and recommendations for organizations that could help them implement the Standard only 21 percent indicated that a survivorship care plan process has been developed. 63 percent believed that Standard 3.3 is the most difficult to implement, compared to Standard 3.1 and 3.2. As practices and cancer centers around the country have undertaken SCP implementation efforts, myriad barriers to their preparation and delivery have emerged, with time and human resource burden top among these, in addition to a lack of proven outcomes. Fortunately, a growing number of publications document practical and feasible delivery models, and an increasingly robust body of research on stakeholder preferences is available to focus SCP implementation efforts. Memorial-Sloane Kettering Cancer Center http://www.mskcc.org/cancer-care/survivorship/survivorship-care-plan Clarify these items: Questions To Be Considered When Implementing Care Plans How will the treatment data be collected and from where? Who will be responsible for collecting and entering the data? What resources will be needed? What the services will be included in the follow-up care? What guidelines will be followed for surveillance? What patient groups will be included? When is the most appropriate time to review the survivorship care plan with patients — at the end of treatment or sometime later? Should there be a formal transition visit? Who will receive the care plan? Will the care plan be stored electronically? Will the care plan be periodically updated?
35. SCP improves communication, quality, and coordination of care for cancer survivors