REVIEW ARTICLE
Cancer Survivorship and Models of Survivorship Care A Review Kenneth D. Miller, MD,*w Manjari Pandey, MD,w Rohit Jain, MD,w and Rutika Mehta, MDw
Abstract: There are over 13 million cancer survivors in the United States. This is heterogenous group in age, cultural background, and cancer history and also in regards to the natural history of their cancer survivorship. There are “seasons of survivorship” including acute, transitional, extended, permanent, and chronic in which the medical and psychosocial problems and needs of cancer survivors change. For example, the medical and psychosocial needs of a testicular cancer survivor who is 1 year beyond diagnosis are very different from the same person 20 years later when the risk of recurrence is very low but the risk of second cancers has risen. This is a review of the “seasons of survivorship.” Some of the specific needs of cancer survivors in each phase of survivorship are presented. Models of survivorship care are also reviewed. Key Words: cancer survivorship, cancer, survivorship, late and longterm effects, chemotherapy, surveillance, toxicity
(Am J Clin Oncol 2015;38:627–633)
I
n the past 3 decades, advances in cancer detection and effective treatment strategies have resulted in the number of cancer survivors in the United States increasing from 3 million in 1971 to an estimated number of 13.7 million living cancer survivors in 2012 (Fig. 1).1,2 Cancer survivors who are in remission or have been cured are living longer, and as a result, the relative proportion of all cancer survivors who live longer than 5, 10, 15, and >20 years postdiagnosis has increased tremendously (Fig. 2).1 Of the 13.7 million cancer survivors in the United States, it is estimated that over 60% have survived Z5 years, 40% have survived Z10 years, and 15% have survived Z20 years after diagnosis (Fig. 3).3 Over the next decade, the population of cancer survivors who have lived Z5 years after their cancer diagnosis is projected to increase approximately 37% to 11.9 million.4 Similarly, the number of cancer survivors who are “living with cancer” has and will continue to increase. Many survivors are alive and in a maintained remission while receiving targeted therapies such as imatinib for chronic myelogenous leukemia, erlotinib for non–small cell lung cancer, or hormonal therapies for breast cancer. Unfortunately, however, improvements in survival from different cancers have not been uniform. Survival curves for patients treated in 3 cohorts (1980 to 1985, 1990 to 1995, and 2000 to 2005) reveal that there is a dramatic improvement From the *University of Maryland School of Medicine, Baltimore, MD; and wSinai Hospital of Baltimore, Baltimore, MD. The authors declare no conflicts of interest. Reprints: Kenneth D. Miller, MD, Sinai Hospital of Baltimore, 2401 W. Belvedere Street, Baltimore, MD 21215. E-mail: kenmille@lifebrisge health.org. Copyright r 2015 Wolters Kluwer Health, Inc. All rights reserved. ISSN: 0277-3732/15/3806-0627 DOI: 10.1097/COC.0000000000000153
American Journal of Clinical Oncology
in survival for patients diagnosed with chronic myelogenous leukemia, but relatively little change has been seen for those treated for non–small cell lung cancer (Figs. 4A, B).5 The term “seasons of survival” was introduced in 1985 by Mullan,6 in a seminal article in the New England Journal of Medicine. The paradigm for survivorship that he developed included 3 phases: Acute survival: a phase including the diagnosis and active treatment of cancer. Extended survival: a period of surveillance for disease recurrence. Permanent survival: characterized by a lower risk of recurrence, but the risk of development of late effects, second and secondary cancer. It has been 28 years since that initial model of survivorship was presented. As a variation on this same theme, the seasons of survivorship can now be considered to include acute survivorship, transition at the end of treatment, extended survivorship, chronic survivorship, and the heterogenous group in permanent survivorship (Fig. 5).7 These seasons of survivorship are dynamic, and transition between “seasons” may occur Z1 times for cancer survivors. Furthermore, with the occurrence of a relapse or the development of second and secondary cancers, a survivor then reenters acute survivorship. The impact of cancer in each of these seasons can be physical, psychological, social, and spiritual and is also related to age, sex, cultural background, medical and psychological strengths and comorbidities, their support systems, the cancer diagnosis, treatment, and outcomes.
ACUTE SURVIVORSHIP Acute survivorship starts at the moment of diagnosis and then extends through the completion of initial cancer therapy, which may include surgery, radiation, and chemotherapy. For some, the diagnosis is acute and unexpected, whereas for others there has been a long prodrome of symptoms and uncertainty, “knowing that something was not right” and experiencing “months, even years, of anxiety, generalized symptoms, and declining health.”8 The process of decision making then engages patients in acquiring and processing unfamiliar types of information. A study conducted in breast cancer adjuvant therapy candidates reported that poor agreement exists between physician and patient regarding risks and benefit of adjuvant therapy. This was attributed to low exchange of information and compression of decision-making process. They noted that 82% of the 79 patients who were meeting with the oncologist for the first time, made final decisions about treatment at the end of meeting. This group has also reported that patients often recall very few of the details of these important consultations.9 The prevalence of clinical anxiety and depression disorders have been studied, but experienced clinicians would
Volume 38, Number 6, December 2015
www.amjclinicaloncology.com |
Copyright r 2015 Wolters Kluwer Health, Inc. All rights reserved.
627
American Journal of Clinical Oncology
Miller et al
Volume 38, Number 6, December 2015
15,000,000 14,000,000 12,000,000
Number
10,000,000 8,000,000 6,000,000 4,000,000 2,000,000 0 75 977 979 981 983 985 987 989 991 993 995 997 999 001 003 005 007 009 011 2 2 1 1 1 1 2 1 1 1 1 2 2 1 2 1 1 1
19
Year
FIGURE 1. Estimated number of cancer survivors in the United States from 1975 to 2012.1
posttraumatic stress disorder at baseline, 16.5% at first followup, and 12.6% at the second follow-up.14
likely report that less severe but meaningful and significant anxiety and depression are very common. In a study of men with testicular cancer, 63% reported that they experienced a crisis at the time of diagnosis, and for 76% of this group, the crisis was worst during the period of diagnosis and treatment.10 Depression may occur, although most patients do not fulfill the clinical criteria of depression. A study which used the BSI and BSI-18 depression subscale demonstrated that 28.8% of patients with pancreatic cancer reported elevated depression compared with 18.5% of other cancers.11 Similarly, another study found higher psychological morbidity in patients with head and neck cancer, in which 12% of patients met the clinical evidence of anxiety and 10% met the criteria for depression.12 In a study of Greek patients, “a sizeable minority of our patients reported intense levels of anxiety (27.2%) and depression (19.6%).” Risk conditions were single patients, females, and patients with advanced disease.13 Cancer survivors may experience posttraumatic stress disorder. One group reported that 23% of women with stages 1 to 3 breast cancer reported symptoms consistent with a diagnosis of
TRANSITIONAL SURVIVORSHIP The end of initial treatment brings a phase of transition back to “normal,” or sometimes referred to as the “new normal.” Survivors enter a phase where the focus shifts to “moving on” and resuming regular life activities. In this phase, the medical team is typically less involved, and relief and celebration may be mixed with feelings of isolation. Armes et al15 conducted a multicenter, prospective, longitudinal study with patients receiving treatment for breast, prostate, colorectal, and gynecologic cancer and non-Hodgkin lymphoma, measuring supportive care needs, anxiety and depression, fear of recurrence, and positive and negative effects at the end of treatment and 6 months later. The majority of patients had few unmet medical or psychosocial needs at the end of treatment. Thirty percent of patients reported having Z5 unmet needs at the end of treatment and 60% of this group still reported that
20 18 16
Number of Millions
14 12 15+ years 10-
Cancer Survivorship and Models of Survivorship Care A Review Kenneth D. Miller, MD,*w Manjari Pandey, MD,w Rohit Jain, MD,w and Rutika Mehta, MDw
Abstract: There are over 13 million cancer survivors in the United States. This is heterogenous group in age, cultural background, and cancer history and also in regards to the natural history of their cancer survivorship. There are “seasons of survivorship” including acute, transitional, extended, permanent, and chronic in which the medical and psychosocial problems and needs of cancer survivors change. For example, the medical and psychosocial needs of a testicular cancer survivor who is 1 year beyond diagnosis are very different from the same person 20 years later when the risk of recurrence is very low but the risk of second cancers has risen. This is a review of the “seasons of survivorship.” Some of the specific needs of cancer survivors in each phase of survivorship are presented. Models of survivorship care are also reviewed. Key Words: cancer survivorship, cancer, survivorship, late and longterm effects, chemotherapy, surveillance, toxicity
(Am J Clin Oncol 2015;38:627–633)
I
n the past 3 decades, advances in cancer detection and effective treatment strategies have resulted in the number of cancer survivors in the United States increasing from 3 million in 1971 to an estimated number of 13.7 million living cancer survivors in 2012 (Fig. 1).1,2 Cancer survivors who are in remission or have been cured are living longer, and as a result, the relative proportion of all cancer survivors who live longer than 5, 10, 15, and >20 years postdiagnosis has increased tremendously (Fig. 2).1 Of the 13.7 million cancer survivors in the United States, it is estimated that over 60% have survived Z5 years, 40% have survived Z10 years, and 15% have survived Z20 years after diagnosis (Fig. 3).3 Over the next decade, the population of cancer survivors who have lived Z5 years after their cancer diagnosis is projected to increase approximately 37% to 11.9 million.4 Similarly, the number of cancer survivors who are “living with cancer” has and will continue to increase. Many survivors are alive and in a maintained remission while receiving targeted therapies such as imatinib for chronic myelogenous leukemia, erlotinib for non–small cell lung cancer, or hormonal therapies for breast cancer. Unfortunately, however, improvements in survival from different cancers have not been uniform. Survival curves for patients treated in 3 cohorts (1980 to 1985, 1990 to 1995, and 2000 to 2005) reveal that there is a dramatic improvement From the *University of Maryland School of Medicine, Baltimore, MD; and wSinai Hospital of Baltimore, Baltimore, MD. The authors declare no conflicts of interest. Reprints: Kenneth D. Miller, MD, Sinai Hospital of Baltimore, 2401 W. Belvedere Street, Baltimore, MD 21215. E-mail: kenmille@lifebrisge health.org. Copyright r 2015 Wolters Kluwer Health, Inc. All rights reserved. ISSN: 0277-3732/15/3806-0627 DOI: 10.1097/COC.0000000000000153
American Journal of Clinical Oncology
in survival for patients diagnosed with chronic myelogenous leukemia, but relatively little change has been seen for those treated for non–small cell lung cancer (Figs. 4A, B).5 The term “seasons of survival” was introduced in 1985 by Mullan,6 in a seminal article in the New England Journal of Medicine. The paradigm for survivorship that he developed included 3 phases: Acute survival: a phase including the diagnosis and active treatment of cancer. Extended survival: a period of surveillance for disease recurrence. Permanent survival: characterized by a lower risk of recurrence, but the risk of development of late effects, second and secondary cancer. It has been 28 years since that initial model of survivorship was presented. As a variation on this same theme, the seasons of survivorship can now be considered to include acute survivorship, transition at the end of treatment, extended survivorship, chronic survivorship, and the heterogenous group in permanent survivorship (Fig. 5).7 These seasons of survivorship are dynamic, and transition between “seasons” may occur Z1 times for cancer survivors. Furthermore, with the occurrence of a relapse or the development of second and secondary cancers, a survivor then reenters acute survivorship. The impact of cancer in each of these seasons can be physical, psychological, social, and spiritual and is also related to age, sex, cultural background, medical and psychological strengths and comorbidities, their support systems, the cancer diagnosis, treatment, and outcomes.
ACUTE SURVIVORSHIP Acute survivorship starts at the moment of diagnosis and then extends through the completion of initial cancer therapy, which may include surgery, radiation, and chemotherapy. For some, the diagnosis is acute and unexpected, whereas for others there has been a long prodrome of symptoms and uncertainty, “knowing that something was not right” and experiencing “months, even years, of anxiety, generalized symptoms, and declining health.”8 The process of decision making then engages patients in acquiring and processing unfamiliar types of information. A study conducted in breast cancer adjuvant therapy candidates reported that poor agreement exists between physician and patient regarding risks and benefit of adjuvant therapy. This was attributed to low exchange of information and compression of decision-making process. They noted that 82% of the 79 patients who were meeting with the oncologist for the first time, made final decisions about treatment at the end of meeting. This group has also reported that patients often recall very few of the details of these important consultations.9 The prevalence of clinical anxiety and depression disorders have been studied, but experienced clinicians would
Volume 38, Number 6, December 2015
www.amjclinicaloncology.com |
Copyright r 2015 Wolters Kluwer Health, Inc. All rights reserved.
627
American Journal of Clinical Oncology
Miller et al
Volume 38, Number 6, December 2015
15,000,000 14,000,000 12,000,000
Number
10,000,000 8,000,000 6,000,000 4,000,000 2,000,000 0 75 977 979 981 983 985 987 989 991 993 995 997 999 001 003 005 007 009 011 2 2 1 1 1 1 2 1 1 1 1 2 2 1 2 1 1 1
19
Year
FIGURE 1. Estimated number of cancer survivors in the United States from 1975 to 2012.1
posttraumatic stress disorder at baseline, 16.5% at first followup, and 12.6% at the second follow-up.14
likely report that less severe but meaningful and significant anxiety and depression are very common. In a study of men with testicular cancer, 63% reported that they experienced a crisis at the time of diagnosis, and for 76% of this group, the crisis was worst during the period of diagnosis and treatment.10 Depression may occur, although most patients do not fulfill the clinical criteria of depression. A study which used the BSI and BSI-18 depression subscale demonstrated that 28.8% of patients with pancreatic cancer reported elevated depression compared with 18.5% of other cancers.11 Similarly, another study found higher psychological morbidity in patients with head and neck cancer, in which 12% of patients met the clinical evidence of anxiety and 10% met the criteria for depression.12 In a study of Greek patients, “a sizeable minority of our patients reported intense levels of anxiety (27.2%) and depression (19.6%).” Risk conditions were single patients, females, and patients with advanced disease.13 Cancer survivors may experience posttraumatic stress disorder. One group reported that 23% of women with stages 1 to 3 breast cancer reported symptoms consistent with a diagnosis of
TRANSITIONAL SURVIVORSHIP The end of initial treatment brings a phase of transition back to “normal,” or sometimes referred to as the “new normal.” Survivors enter a phase where the focus shifts to “moving on” and resuming regular life activities. In this phase, the medical team is typically less involved, and relief and celebration may be mixed with feelings of isolation. Armes et al15 conducted a multicenter, prospective, longitudinal study with patients receiving treatment for breast, prostate, colorectal, and gynecologic cancer and non-Hodgkin lymphoma, measuring supportive care needs, anxiety and depression, fear of recurrence, and positive and negative effects at the end of treatment and 6 months later. The majority of patients had few unmet medical or psychosocial needs at the end of treatment. Thirty percent of patients reported having Z5 unmet needs at the end of treatment and 60% of this group still reported that
20 18 16
Number of Millions
14 12 15+ years 10-
