- Email: [email protected]
Prevention, Identification, and Management of Late Effects Through Risk Reduction
Accepted Manuscript Prevention, Identification, and Management of Late Effects Through Risk Reduction Barbara A. Given , PhD, RN, FAAN PII:
S0749-2081(14)00090-4
DOI:
10.1016/j.soncn.2014.11.004
Reference:
YSONU 50674
To appear in:
Seminars in Oncology Nursing
Please cite this article as: Given BA, Prevention, Identification, and Management of Late Effects Through Risk Reduction, Seminars in Oncology Nursing (2015), doi: 10.1016/j.soncn.2014.11.004. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT
Prevention, Identification, and Management of Late Effects Through Risk Reduction
SC
RI PT
Seminars in Oncology Nursing
AC C
EP
TE D
M AN U
Barbara A. Given, PhD, RN, FAAN University Distinguished Professor College of Nursing Michigan State University C383 Bott Building 1355 Bogue Street East Lansing MI 48823 [email protected] (517) 355-6526
1
ACCEPTED MANUSCRIPT
Abstract
Objectives: To review the psychosocial factors that affect quality of care and quality of life in
RI PT
cancer survivors, and discuss risk reduction through assessment for the early identification and management of the residual, long-term and late effects.
SC
Data Sources: Literature review on survivorship and intervention strategies.
M AN U
Conclusion: There is limited literature on the psychosocial dimensions of cancer survivorship and even more limited on strategies for care.
Implications: Nurses have a major leadership role in assisting survivors and their families. Much
Key Words
TE D
research is needed to provide the knowledge needed for care.
AC C
strategies
EP
Survivorship, psychosocial dimensions, assessment, residual, long-term and late effects,
2
ACCEPTED MANUSCRIPT
There are nearly 14.5 million cancer survivors in the United States and this number is expected to grow to 19 million by 2024. Each year over 1 million patients join the population of 5-year
RI PT
survivors with more than 1.66 million new cases expected in 2014 [1]. Among cancer survivors, 64% were diagnosed five or more years ago and 15% were diagnosed 20 or more years ago. Only 5% of cancer survivors are younger than 40, while 46% are 70 and older. Survivors’ age
SC
ranges vary by cancer type, for example, 62% of prostate cancer survivors are 70 and older, while 32% of melanoma survivors are in this older age group [2]. Thus, quality of survivorship
M AN U
cancer care should be a major concern across the life span.
Cancer treatments may cause long-term problems for patients in physical, social and psychological areas. How best to care for survivors remains unclear with few existing guidelines or standards for care. Extensive recent focus has been on Survivorship Care Plans (SCP) as
TE D
recommended by the Institute of Medicine; although designed to improve survivor outcomes, there has been limited adoption and general use to date [3-5]. Most SCP’s are limited to screening and diagnostic follow-up, thus limited in bringing about positive patient psychosocial
EP
outcomes. Patients receive little guidance, information and support for what to do as they experience their “new normal” when cancer treatment is over. Patients wonder “what now” and
AC C
are filled with uncertainty about future expectations related to cancer and what to do about residual and persistent effects affecting their quality of life.
This article examines the psychosocial factors that can affect achieving high quality survivorship care and quality of life (QOL) of cancer survivors. Discussion is organized on the transition period from cancer treatment completion, into the post-active treatment period with residual effects, long-term effects (persistent) and subsequent late effects for adults. Assessment and management of patient issues during the survivorship period and strategies for nurses to assist
3
ACCEPTED MANUSCRIPT
patients during the survivorship phase are discussed along with recommendations for future research.
RI PT
Survivor Issues – Screening and Assessment Some patients have residual and long-term effects following the end of treatment and then late effects months or many years later (organ dysfunction such as cardiac or gastrointestinal).
SC
These effects can lead to premature development of age-related changes, an increased risk of developing common comorbidities and altered response to treatment for these existing
M AN U
comorbidities. Cancer and treatment- related changes can increase the risk for long-term mortality. Few studies exist about the trajectories of patients as they move from treatment to the post-treatment period [4,6].
Survivorship care after treatment often is limited to recommendations of surveillance for cancer
TE D
progression, recurrence, or a new cancer. The recommendation of the SCP’s is for screening tests to ascertain the disease status. Health promotion, primary or secondary cancer prevention, emotional health or symptom management need to be considered in these plans –they are often
EP
not mentioned. A comprehensive post-treatment assessment should guide the creation of a post-treatment survivorship care plan and include more than surveillance. It is important to
AC C
consider a comprehensive assessment for the early identification of residual, long-term and late effects. Interventions can then be designed to prevent or reduce the risk of these effects and promote quality of life for the survivors when they do occur. A comprehensive plan serves as a guide and roadmap for patients and their families [4,7].
Background At the end of active treatment cancer survivors should receive a screening and risk assessment to identify residual effects, long-term effects, and identify risks for potential effects based on
4
ACCEPTED MANUSCRIPT
risks from the type and duration of treatment. In addition, health promotion and disease prevention should be considered. An individualized assessment based on patient characteristics such as age, sex, race, ethnicity, health history, employment status, past cancer treatment and
RI PT
comorbidities is needed. The assessment needs to include psychosocial concerns (anxiety and depression), family issues and overall functioning [8]. The frequency (intensity) and duration of screening (period at risk) should be established as active treatment ends and patient needs
SC
exist.
M AN U
Age at the time of cancer treatment may be considered with patients’ response and type of residual and long-term effects. Patients under 45 years of age will respond differently and have different concerns about infertility, body image, sexual dysfunction and persistent pain compared to older patients. Late effects that can affect employment are especially problematic to an employed population. For older individuals, pre-existing and consistent, physical and
TE D
functional status, comorbid conditions along with site and stage of cancer and treatment approach are predictors of residual long-term and late effects.
EP
Those who are younger and have lower levels of education, and those who are unmarried/not partnered at diagnosis report lower QOL during the survivorship period. There appears to be
AC C
racial/ethnic variation in QOL among survivors. Latina women report more physical limitations and African American women report both poorer physical and social well-being but less emotional distress compared with white women [9].
Enhancing health behaviors for the survivor is essential to long-term quality of life. A focus on the patient’s current experiences (symptoms and side effects with respect to lingering persistent physical, residual and psychosocial symptoms) should occur. Genetic counseling and testing may influence risk perception and motivation for engagement in protective health behaviors for
5
ACCEPTED MANUSCRIPT
some of the younger survivors [8]. Health behaviors and lifestyle patterns that will help patients achieve a healthy lifestyle should be determined.
RI PT
Assessing the treatment course is defined by the types, stage of cancer, sequences of treatment (surgery, chemotherapy [infusion or oral targeted agents], or radiation) concurrent or sequenced, the duration of the treatment, and any recurrence or progression. Based on this
SC
dosage and treatment assessment, the risks of late and long-term effects can be determined. Patients should be aware of what to expect and when; by incorporating this in the plan of care, it
M AN U
reduces patient uncertainty [5].
Physical Problems
Physical/medical problems, second cancers, osteoporosis, hypertension, cataracts, cardiovascular disease, obesity, lymphedema, hearing loss, sexual dysfunction, dental
TE D
problems and overall physical functional decline should be considered in the long term. Heart problems may result long-term from chemotherapeutic drugs such as doxorubicin or cyclophosphamide. Radiation to the chest may damage the lungs. Osteoporosis may result from
EP
chemotherapy or steroids as well as hormonal treatment. Menopause and endocrine problems may occur. Chemotherapy and radiation may cause damage to the brain, spinal cord and the
AC C
nervous system. Residual effects such as fatigue, pain, sleep disturbance, peripheral neuropathy and overall symptom burden, altered immune status, bowel and bladder changes can occur (Figure 1). Patients need to be aware of these potential long-term and late effects. Comprehensive assessment shared with them provides this support [4]. [Place Table 1 here]
6
ACCEPTED MANUSCRIPT
Shi and colleagues [10] reported that 92% of survivors reported cancer or cancer-related symptoms that were present even at one year post-treatment termination (25% experienced high symptom burden). Symptoms include pain, fatigue, sleep disturbance, depression and
RI PT
anxiety. Higher related uncertainty among survivors has been shown to be significantly associated with fatigue, insomnia, negative affect and a less positive affect even as long as four years post-treatment [11]. These can contribute to the survivors’ physical health and overall
SC
quality of life.
M AN U
Emotional Health and Well-being
Psychological issues include depression, fear, anxiety, uncertainty, body image, stigma, and intense fear of recurrence. Anxiety, depression and fear are the most common emotional health concerns during the survivorship period declining over time. Prior depression is known to put women with breast cancer at risk for emotional distress during survivorship [9]. Trajectories of
TE D
psychological effects and adjustment years into cancer survivorship need further description.
Survivors in this phase of care often acknowledge that they have many uncertainties, and need
EP
additional information. Lack of information seems to be a major contributor to this uncertainty. Patients need information about: 1) health-related risk for long-term or late effects; 2) symptom
AC C
management for residual and persistent symptoms; 3) fear about recurrence 4) social resources (e.g., legal resources); and 5) ambiguities about family and work roles [8,12].
Survivors may have difficulty interpreting the significance of the symptoms they experience and may fear recurrence with every symptom they experience. Survivors are often unprepared for the persistence of symptoms and limitations and may perseverate over the meaning, fearing progression or recurrence. They are unclear whether the signs and symptoms (especially late effects) are due to a new cancer, a secondary cancer, disease progression, recurrence, or a
7
ACCEPTED MANUSCRIPT
totally different disease (non-cancer) such as heart disease. Survivors can be left without effective methods for addressing their experiences and conclude that they are not recovering as they should. Questions about prognosis are ever present. Assessment should include a
RI PT
determination of specific information needs and areas of uncertainties so strategies to help patients can be identified [13].
SC
Social Areas
Interpersonal relationships, intimacy and communication with others are important areas for
M AN U
assessment and screening. Survivors often have difficulties (ie role adjustment) transitioning back to their normal roles. They are challenged to resume former workplace and family roles often at a time when they are not ready to do this because of lingering and persistent effects or late effects. They are expected to move on and return to “normal” when they may not yet be ready. Understanding the family relationships and expectations is an important feature of the
TE D
assessment that can guide and tailor care [9].
Staying connected with the health care system/Primary Care/Oncologist may be a problematic
EP
area for survivors, as they feel they have lost a valuable safety net - the oncology team. Patients’ concerns about the role of each in primary care versus oncology care should be
AC C
determined and plans should be made to help the patient understand the appropriate source of care for their problems.
The loss of employment or delayed return to work can have a lasting and long term impact on the survivor. Financial burden needs to be determined [14]. Lymphedema from surgery, with the accompanying mobility restrictions, swelling, and discomfort may occur with breast or head and neck cancer or from pelvic radiation. Changes in neurocognitive ability may complicate tasks that were previously routine which may prevent learning new tasks, keeping pace with others
8
ACCEPTED MANUSCRIPT
and increase the risk of work disability [15-17]. Cognitive changes not only influence survivors’ confidence in their ability to return to work, but these changes (working memory, executive function and attention) also negatively impact their job performance [16]. Limitation such as
RI PT
lifting, or endurance and concentrating can lead to employment difficulties. Other difficulties at work occur with physically demanding work tasks. Survivors of cancer of bone or soft tissue may experience the loss of all or a part of a limb that can cause physical or psychological
SC
symptoms. Persistent high symptom burden may affect employment.
M AN U
Survivors, especially minority patients, have a greater risk of being unemployed than noncancer controls [17-19]. Lack of employment impacts quality of life for survivors through access to health insurance, economic stability, and supportive social relationships. Changes in work status with related financial impact should be determined as a part of the assessment. Can survivors meet the expected work demands or are accommodations needed? Specific aspects
aspects of work [20].
TE D
of work should be determined to consider physical, cognitive, emotional and interpersonal
EP
Summary of Risk Assessment
Risk assessments can help to stratify cancer survivors into different levels of intensity of unmet
AC C
needs and risks and provide the needed guidance for follow-up care (see Table 1).
Components needed include elements of treatment, risk of recurrence, persistence of moderate to severe residual effects of therapy, long-term effects, risk of or presence of late effects, and risk of decreased emotional well-being. Information needs, physical function and psychosocial status should be determined. These assessment areas can be organized into a plan of care with a clear direction as to who is responsible for the ongoing care; the oncology team or the primary care team. Mediator variables such as age, sex, race, ethnicity, comorbidity, family support,
9
ACCEPTED MANUSCRIPT
and/or social status may help to identify which survivors are at increased risk for poor outcomes (see Figure 1). Access to and understanding of a comprehensive care plan and available services is a necessity for survivor health, well-being and quality of life [21].
RI PT
[Figure 1 here]
Managing Post-Treatment Survivorship for Patients
SC
Through the assessment and identification of concerns and potential problems with guidance from nurses, a plan for survivorship care can be established to reduce or eliminate risks and
M AN U
manage problems that do occur (see Table 2). What is needed is a codified set by type of unmet needs, physical, emotional and social. Best practices should guide the follow-up and long term care. This plan needs to be directed toward the phases in potential long-term and late effects, in addition to manage existing residual effects at the end of treatment, the plan needs to be written and clear for the patient’s understanding with designation as to which health
TE D
professional will provide the assistance. Survivors need to know who to communicate with and what type and level of symptoms to communicate. Strategies to deal with provider communication should be prioritized according to patients’ residual problems as they exit
EP
treatment. Self-management strategies must be tailored to their unmet needs. Oncology teams and primary care providers should communicate and each be aware of their respective roles for
AC C
sharing care during the survivor period. Patients need to be informed as to what they may expect from each type of provider and what is taken to the primary care provider and what goes to the oncology team. Facilitating communication between providers and patients may be an important role for nurses. [Table 2 here]
As we plan future care for survivors, we can use individual models of patient care, however we also need to look at our systems of care. Table 1 is an example of a model that could be used.
10
ACCEPTED MANUSCRIPT
Is the healthcare resources patients need available? We need to ensure that responsibility of care is assigned whether it is to primary care or the oncology team. Health system coordination is essential. Written treatment summaries and care plans can provide a care roadmap for all.
RI PT
These summaries should clearly delineate which provider is responsible for which aspect of care. Patients should be guided to a clear understanding.
SC
The clinical management during the survivorship trajectory is intended to reduce the risk of negative outcomes and requires collaboration and coordination between the numerous
M AN U
members of the oncologist team and primary care providers. This is needed to ensure quality patient centered post cancer care. It is important to link patient problems and unmet needs with targeted care strategies that have the potential to produce improved patient outcomes either through prevention, risk reduction or planned care management activities. We need to identify desired patient outcomes for survivors at several key time points in the survivorship trajectory.
TE D
Appropriate times should be determined and could be the start of the survivorship period, at 3, 6 and 12 months at minimum which is often the follow up for diagnostic tests. Other times that are
EP
relevant relate to the expected late effects of certain cancers or type of treatment received.
Returning to Health Behaviors and a Healthy Lifestyle
AC C
Patients will need guidance on lifestyle behaviors post-treatment. Currently there is a lack of consensus on how to best help cancer survivors adopt and maintain a healthy life style. Recommendations for a heart-healthy lifestyle (diet, exercise, weight control) is recommended [23]. Control of comorbid conditions like hypertension and diabetes is a concern for management and needs to include the primary care providers.
11
ACCEPTED MANUSCRIPT
Interventions for health behaviors (e.g., physical activity, diet and smoking cessation) after cancer treatment can produce benefits across a number of outcomes that include physical
RI PT
functional status, weight control and mental health, [24-26] as well as overall quality of life [27].
Physical Activity
Cancer survivors can experience a positive outcome in time to return to work and in work
SC
performance with a moderate level physical exercise [23,28,29]. It has been demonstrated that moderately intense exercise may safely be performed by cancer survivors [23,29]. Beneficial
M AN U
effects from physical activity occur in health-related quality of life for emotional well-being, sleep, sexuality, anxiety, pain, fatigue, distress, fitness and energy level, aerobic fitness, strength and social functioning [30]. Some patients may need to be instructed and guided in proper physical activities by rehabilitation and occupational therapy specialists.
TE D
Survivors should maintain a healthy weight; diet recommendations may be needed [25]. Health promotion efforts need to address the survivors’ perception on weight since there is a high rate of obesity in individuals with breast, prostate and colorectal cancers. The American Cancer
EP
Society guidelines advocate that cancer survivors maintain a healthy weight [23]. Strategies for promoting bone health including osteoporosis prevention, and exercise to prevent physical
AC C
decline should be considered. Smoking cessation and tobacco control should be considered if appropriate. Alcohol moderation will be needed for some patients. Sexual and reproductive health are other areas to be considered. There are no standard practice guidelines for these health behaviors currently. Existing guidelines for other phases of cancer care should be considered for adaptation and for implementation at this phase [24]. It has been shown that individuals who make favorable changes in these lifestyle factors after cancer diagnosis feel better, experience less fatigue, and may possibly even decrease risk of cancer recurrence [24]. TheAmerican Cancer Society (ACS) recommends general healthy behaviors should be stressed
12
ACCEPTED MANUSCRIPT
to improve health and QOL survival. Lifestyle Changes that Make a Difference is an ACS booklet available for patients [23,31]
RI PT
Clinicians need to provide education to survivors about their individual risk for recurrence. Patients benefit from receiving information about strategies to alleviate and/or manage their fear about recurrence [9]. They need guidance to differentiate a comorbid problem from that of
SC
persistent treatment effects. Understanding the symptoms can help reduce some of the fear and
Emotional Health and Well-Being
M AN U
uncertainty.
Patients with continued anxiety and depression should be referred to appropriate mental health services. Continued anxiety, depression and constant worry can affect the patient’s emotional well-being and has to be considered a late effect of cancer treatment [9,32]. Use of active
TE D
coping strategies such as problem solving, identifying benefits in the cancer experience, and expressing emotions related to cancer can bolster psychological adjustment and contribute to
EP
the patient’s QOL.
Fear and uncertainty about recurrence consistently ranks among the most pressing concerns
AC C
identified by cancer survivors and may persist for years. Patients benefit from education and guidance about actual cancer recurrence risk and tailored strategies to manage this worry. Counseling for those with anxiety, worry and depression should be considered [9].
Coordination and Collaboration Based on a comprehensive assessment and the development of a survivorship care plan, planned follow-up and intervention can be used to clarify provider roles (primary care vs. oncology) and needed follow-up care for patients. Patients should be prepared for the
13
ACCEPTED MANUSCRIPT
appropriate risk of the long-term and late effects that are expected to occur. We need to remember the plan of care is for the patient thus patient and family education and self-advocacy are necessary to enable patient self-care management. Patients should be assisted to develop
RI PT
their self-care skills. Nurses, whether in oncology practices or primary care, can have an important role in the collaboration and coordination of care (shared care) between and among providers and the patient and family. Patients in survivorship phase with high levels of providers’
SC
collaboration have lower rates of hospitalization due to higher dimensions of quality of care compared to these patients with low levels of collaboration among providers [32]. Shared care
M AN U
and collaboration is essential if the patient is to have the most support. Nurses can help make this coordination and collaboration a reality using the assessment and plan of care. Patients may need assistance to understand how their care will be shared and coordinated.
Symptom Risk Reduction and Management
TE D
Residual symptom burden has been shown to be related to post-cancer employment. Symptom clusters (typically fatigue, pain, sleep insufficiency, distress and depression) are commonly reported in the survivorship period [11]. Participants reporting moderate or greater interference
EP
from symptoms had eight times the odds of reporting that they were no longer working as their less-affected counterparts, thus helping with symptom management is a priority. Residual
AC C
symptoms at the end may be targets for intervention to improve work outcomes [17,18]. Sikorskii and colleagues [33] reported that 50% of patients reported a mean of 6.8 symptoms at the time of completion of cancer therapy. These rates were twice as high among patients who reported clinical indicators of depression along with two or more comorbid conditions. Thus for post-treatment, intervention needs to include symptom management. Patients need strategies to deal with the symptoms, to know what is important to report and when to report them to providers. They will need guidance to distinguish between residual and long-term effects compared to disease progression, recurrence or a second cancer.
14
ACCEPTED MANUSCRIPT
As patients leave the treatment period, they are often uncertain who is to provide what care. This uncertainty accentuates an already stressful time. As they transition into the post-treatment
RI PT
period patients describe fear and uncertainty about the coordination of care and whether they will be monitored at sufficiently frequent intervals to identify progression or new disease [12]. Some major cancer centers have survivorship clinics that assist with this, however at this point,
SC
this is available to a minority of patients [7]. Charged with accelerating progress to address the needs of cancer survivors, the LIVESTRONG Survivorship Centers of Excellence have initiated
M AN U
approaches to support patients and their families [34].
Patients’ overall uncertainty may benefit from informational interventions [11]. Educational interventions can help to reduce uncertainties for survivors to understand risk of recurrence, long term and late effect. Patients and their families need to be educated in survivorship
TE D
surveillance and management of sequelae [7,9,35]. Treatment summaries tailored to individual needs can increase patient knowledge, serve as a reference, and provide reassurance and
EP
reduce uncertainties.
Specific web sites and other resources can be recommended [7]. The American Society of
AC C
Clinical Oncology (ASCO) patient education web site, Cancer.net, has a section devoted to survivorship [35]. Included in the Cancer.net content is the ASCO downloadable booklet on survivorship, “Cancer Survivorship: Next Steps for Patients and Their Families” which should be provided as a resource for patients. Building and refining the patient’s knowledge base the survivorship period should help to maximize psychosocial quality of life.
Social Support
15
ACCEPTED MANUSCRIPT
The various sources and types of support (e.g., family, provider, informational, decisional, and emotional) may help survivors meet their needs over time. Janz and colleagues [9] found that women with more declines in emotional well-being reported low support from health care
RI PT
providers, compared with women who reported high support. Similar trends were observed for family/partner and friends/coworker support. Social isolation and lack of social support intensify quality of life deficits in cancer survivors. Nurses can assist patients to seek the needed support.
SC
If lack of social support exists, web-based support groups, or the Cancer Support Community
M AN U
program may be beneficial [36,37].
Patients may need guidance to prepare for role adjustment if they have permanent physical or cognitive limitations. At times, helping them to manage residual or new symptoms will enable them to continue roles such as their work and family roles.
TE D
Even if the cancer centers dismisses patients to primary care they can be connected to a resource such as ASCO, ACS, National Cancer Institute (NCI), and Oncology Nursing Society (ONS) where information is provided. Patients must become engaged participants in their care.
EP
Nurses are key to providing guidance for them.
AC C
Survivorship care depends on the patient and family working together. Caregivers have their own response to this period in the cancer trajectory. Nurses need to realize that they may need their own guidance and support. The caregiver role in survivorship should be a part of the risk assessment and plan of care [38].
Self-Management Skills Patients need information and self-management skills to address their concerns and assist them to develop their own self-care skills as they return to the post-treatment phase. To
16
ACCEPTED MANUSCRIPT
recover/maintain physical and psychological function and role function, patients will need to acquire and use self-care management strategies tailored to their capacity [13,22]. Studies on cognitive-behavioral, stress management (e.g., relaxation, mindfulness), symptom
RI PT
management, and psychoeducational interventions geared toward survivorship issues during the re-entry phase are limited.
SC
Post-treatment symptoms are amenable to intervention using the evidence based interventions of cognitive, behavioral and psychoeducational approaches. Numerous evidence-based
M AN U
interventions for symptom management exist and this can be adapted for the survivorship period [32].
Randomized trials that do exist indicate that interventions offered at re-entry (primarily breast and prostate studies) can be effective. These can confer benefits in such domains as
TE D
depressive symptoms, physical functioning, fatigue, sleep disturbances, fear of recurrence, pain, sexual health, menopausal symptoms, post-traumatic stress symptoms and general quality of life [39-52]. Survivorship care should focus on preventing problems or alleviated
EP
problems using and adapting evidence-based strategies known to work [21].
AC C
E-health and M-health strategies can be used to guide patients through computer-assisted decision support systems to monitor their symptoms and side effects, or to provide social support. Post-treatment care can be made efficient through the use of strategies to monitor patient status. With electronic medical records patients could report in their electronic medical record so that provider teams could monitor patients’ path through survivorship. The internet and other efficient delivery modalities hold promise when nurse resources are limited. An internet-based cognitive-behavioral intervention to improve symptoms in cancer survivors demonstrated positive effects [53]. Automated symptom monitoring and centralized telephone
17
ACCEPTED MANUSCRIPT
care management resulted in significant reductions in survivors [45]. Apps could be used for patient monitoring.
RI PT
Future Research The role of health behaviors (e.g., adherence to therapies, cancer prevention, and screening) as well as other healthy behaviors in preventing cancer recurrence and improving quality of life
SC
require additional controlled trials.
More research is needed to assess the benefits of control of comorbid conditions. Do
M AN U
comorbidities cause more long-term, late cancer and cancer treatment effects? We need a better understanding of who is at risk for negative post-treatment outcomes. Risk models are needed to identify resources needed for the transition care.
There is limited information on the patterns of residual symptoms or functional limitations
TE D
experienced by patients as they complete treatment. There is little description of prevalence of problems immediate post-treatment, how long these problems persist and their severity of duration as they impact patients’ QOL. Studies are needed to address methods to assist
EP
patients in monitoring and managing their residual problems.
AC C
Research also is needed to identify for whom and under what conditions psychosocial and behavioral interventions are most effective (ie, moderators of effects) and when in the survivorship trajectory they are more beneficial. The appropriate psychosocial care can be targeted and tailored at appropriate intervals for those with unmet needs.
More research on survivorship with diverse groups is needed to determine how needs differ. Disparities in access to important information and appropriate providers affect QOL as well as
18
ACCEPTED MANUSCRIPT
quality of care. Types of cancer and varied treatment follow-up beyond breast and prostate cancer is needed to understand the diversity of needs.
RI PT
Lifestyle factors are increasingly being implicated in cancer prognosis. Obesity, inactivity, poor dietary quality, and continued smoking after cancer diagnosis have all been linked to increased risk of cancer recurrence and mortality. A few interventional studies have demonstrated that
SC
behavior change after cancer diagnosis is achievable. Trials are needed to test the impact of purposeful weight loss, dietary modification, and increased physical activity on length of residual
M AN U
effects and risk of disease recurrence.
Timing for survivorship care should be a component of future research. When should a plan be integrated, for how long? What is the optional follow up period [54]? What are the set of outcomes examined for survivors? What beyond disease status should be used to describe their
TE D
health status [54]?
Much of the data on late and long-term cancer effects is based on studies that do not include
EP
older adults, especially those with any comorbidities. Although older adults are the majority of those diagnosed with cancer there are few guidelines specific to this population. A research
AC C
emphasis regarding the impact of long term and late effects is critically needed.
Clarification and designation of the provider role or the shared care model should be ongoing as the survivorship period continues. Research is needed to document the benefit of the various approaches to follow-up – the shared care with primary care and oncology both coordinating the care vs a model with each separately providing patient care. What are the patient outcomes?
19
ACCEPTED MANUSCRIPT
In addition to having a SCP for all patients, we need to develop evidenced-based practice guidelines and test their effectiveness for those with residual persistent problems, long-term and late effects. Clinical trials are needed to test the effectiveness on patient outcomes. Current
RI PT
guidelines are often consensus based.
Payment considerations might be a barrier to survivorship care. Research is needed to
SC
determine if this is true and to understand resource use during this phase of cancer care needs.
M AN U
Studies need to provide information on those from underserved populations. Do the care models provide culturally sensitive approaches of care?
Conclusion
Nurses can take the lead and assume the responsibility for an assessment that in addition to
TE D
disease and treatment follow- up include the psychosocial, comorbidity and QOL issues. Nurses can promote patient health and ensure a focus on enhancing post-treatment lifestyle as well. What role adjustment support do patients need? Whether nurses are in oncology or primary
EP
care or work in cancer centers, they can take on this role and facilitate communication and
AC C
collaboration for the coordination of care.
Nurses and nurse practitioners in both primary care and oncology care can step up and assume leadership for the survivorship period. Only through attention to the existing and potential problems can survivors have overall quality of life after a cancer diagnosis and treatment.
20
ACCEPTED MANUSCRIPT
References: [1] DeSantis CE, Lin CC, Mariotto AB, et al. Cancer treatment and survivorship statistics, 2014. CA Cancer J Clin 2014;64:252-271.
RI PT
[2] Siegel R, Naishadham D, Jemal A. Cancer statistics for Hispanics/Latinos. CA Cancer J Clin 2012;62:283-298.
[3] Barton MK. Oncologists and primary care physicians infrequently provide survivorship care
SC
plans. CA Cancer J Clin 2014;64:291-292.
[4] Earle CC, Deevy J. Cancer survivorship: monitoring the long-term and late effects of
M AN U
treatment, in: Johnson FE, Maehara Y, Browman GP, et al, editors. Patient Surveillance after Cancer Treatment. New York: Humana Press; 2013: pp. 31-37.
[5] Hewitt M, Greenfield S, Stovall E, editors. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press: 2006. Available at: http://www.nap.edu/openbook.php?record_id=11468&page=R1
TE D
[6] Ganz PA, Guadagnoli E, Landrum MB, Lash TL, Rakowski W, Silliman RA. Breast cancer in older women: quality of life and psychosocial adjustment in the 15 months after diagnosis. J Clin Oncol 2003;21:4027-4033.
EP
[7] Nissen MJ, Tsai ML, Blaes AH, Swenson KK, Koering S. Effectiveness of treatment summaries in increasing breast and colorectal cancer survivors’ knowledge about their
AC C
diagnosis and treatment. J Cancer Surviv 2013;7:211-218. [8] Ashing-Giwa K, Tapp C, Brown S, et al. Are survivorship care plans responsive to AfricanAmerican breast cancer survivors?: voices of survivors and advocates. J Cancer Surviv 2013;7:283-291.
[9] Janz NK, Friese CR, Li Y, Graff JJ, Hamilton AS, Hawley ST. Emotional well-being years post-treatment for breast cancer: prospective, multi-ethnic, and population-based analysis. J Cancer Surviv 2014;8:131-142.
21
ACCEPTED MANUSCRIPT
[10] Shi Q, Smith TG, Michonski JD, Stein KD, Kaw C, Cleeland CS. Symptom burden in cancer survivors 1 year after diagnosis: a report from the American Cancer Society’s studies of cancer survivors. Cancer 2011;117:2779-2790.
RI PT
[11] Hall DL, Mishel MH, Germino BB. Living with cancer-related uncertainty: associations with fatigue, insomnia, and affect in younger breast cancer survivors. Support Care Cancer 2014;22:2489-2495.
SC
[12] Miller LE. Sources of uncertainty in cancer survivorship. J Cancer Surviv 2012;6:431-440. [13] Kent EE, Arora NK, Rowland JH, et al. Health information needs and health-related quality
M AN U
of life in a diverse population of long-term cancer survivors. Patient Educ Couns 2012;89:345352.
[14] Fenn KM, Evan SB, McCorkle R, et al. Impact of financial burden of cancer on survivors’ quality of life. J Oncol Pract 2014; Epub ahead of print.
[15] Mehnert A, de Boer A, Feuerstein M. Employment challenges for cancer survivors. Cancer
TE D
2013;119:2151-2159.
[16] Ottati A, Feuerstein M. Brief self-report measure of work-related cognitive limitations in breast cancer survivors. J Cancer Surviv 2013;7:262-273.
EP
[17] Tevaarwerk AJ, Lee JW, Sesto ME, et al. Employment outcomes among survivors of common cancers: the Symptom Outcomes and Practice Patterns (SOAPP) study. J Cancer
AC C
Surviv 2013;7:191-202.
[18] Bradley CJ, Wilk A. Racial differences in quality of life and employment outcomes in insured women with breast cancer. J Cancer Surviv 2014;8:49-59. [19] Harrington CB, Hansen JA, Moskowitz M, Todd L, Feuerstein M. It’s not over when it’s over: long-term symptoms in cancer survivors-a systemic review. Int J Psychiatry Med 2010;40:163181.
22
ACCEPTED MANUSCRIPT
[20] Moskowitz MC, Todd BL, Chen R, Feuerstein M. Function and friction at work: a multidimensional analysis of work outcomes in cancer survivors. J Cancer Surviv 2014;8:173182.
RI PT
[21] McNeil C. Promoting health behaviors among cancer survivors. ASCO Post 2014;5. Available at: http://www.ascopost.com/issues/may-15,-2014/promoting-health-behaviorsamong-cancer-survivors.aspx (accessed June 23, 2014).
SC
[22] Given CW, Given BA. Symptom Management and psychosocial outcomes following cancer. Semin Oncol. 2013;40:774-783.
M AN U
[23] American Cancer Society. Lifestyle changes that make a difference: nutrition and physical activity guidelines for cancer survivors. Atlanta, GA: American Cancer Society; 2012. Available at: http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc037186.pdf (accessed July 25, 2014)
[24] Demark-Wahnefried W, Morey MC, Sloane R, et al. Reach out to enhance wellness home-
TE D
based diet-exercise intervention promotes reproducible and sustainable long-term improvements in health behaviors, body weight, and physical functioning in older, overweight/obese cancer survivors. J Clin Oncol 2012;30:2354-2361.
EP
[25] Ligibel J. Lifestyle factors in cancer survivorship. J Clin Oncol 2012;30:3697-3704. [26] Moye J, Langdon M, Jones JM, Haggstrom D, Naik AD. Managing health care after cancer
AC C
treatment: a wellness plan. Federal Practitioner 2014;31:24S-29S. [27] LeMasters TJ, Madhavan SS, Sambamoorthi U, Kurian S. Health behaviors among breast, prostate, and colorectal cancer survivors: a US population-based case-control study, with comparisons by cancer type and gender. J Cancer Surviv 2014;8:336-348. [28] de Boer AG, Taskila T, Tamminga SJ, Frings-Dresen MHW, Feuerstein M, Verbeek JH. Interventions to enhance return-to-work for cancer patients (review). Cochrane Database Syst Rev 2011;2:CD007569.
23
ACCEPTED MANUSCRIPT
[29] Schmitz KH, Courneya KS, Matthews C, et al. American College of Sports Medicine roundtable on exercise guidelines for cancer survivors. Med Sci Sports Exerc 2010;42:14091426.
cancer survivors’ experiences. J Cancer Surviv 2013;7:237-246.
RI PT
[30] Groeneveld IF, de Boer AG, Frings-Dresen MH. Physical exercise and return to work:
[31] Kushi LH, Doyle C, McCullough M, et al. American Cancer Society guidelines on nutrition
SC
and physical activity for cancer prevention. CA Cancer J Clin 2012;62:30-67.
[32] Pollack CE, Frick KD, Herbert RJ, et al. It’s who you know: patient-sharing, quality, and
M AN U
costs of cancer survivorship care. J Cancer Surviv 2014;8:156-166.
[33] Sikorskii A, Given CW, You M, Jeon S, Given BA. Response analysis for multiple symptoms revealed differences between arms of a symptom management trial. J Clin Epidemiol 2009;62:716-724.
[34] LIVESTRONG Survivorship Centers of Excellence. Available at:
TE D
http://www.livestrong.org/what-we-do/our-actions/programs-partnerships/livestrong-survivorshipcenters-of-excellence/ (accessed September 12, 2014). [35] American Society of Clinical Oncology. Cancer survivorship: next steps for patients and
EP
their families. Alexandria, VA: ASCO; 2011. Available at: http://www.cancer.net/sites/cancer.net/files/vignette/Cancer_Survivorship.pdf (accessed July 20,
AC C
2014).
[36] National Cancer Institute. Facing Forward: Life after Cancer Treatment. May 2014. http://www.cancer.gov/cancertopics/coping/life-after-treatment [37] National Coalition for Cancer Survivorship. Available at: http://www.canceradvocacy.org/ (accessed July 20, 2014). [38] National Cancer Institute. Survivorship - Living With and Beyond Cancer. Available at: http://www.cancer.gov/cancertopics/coping/survivorship (accessed September 12, 2014).
24
ACCEPTED MANUSCRIPT
[39] Broderick JM, Guinan E, Kennedy MJ, et al. Feasibility and efficacy of a supervised exercise intervention in de-conditioned cancer survivors during the early survivorship phase: the PEACH trial. J Cancer Surviv 2013;7:551-562.
RI PT
[40] Dolbeault S, Cayrou S, Bredart A, et al. The effectiveness of a psycho-educational group after early-stage breast cancer treatment: results of a randomized French study. Psychooncology 2009;18:647-656.
SC
[41] DuHamel KN, Mosher CE, Winkel G, et al. Randomized clinical trial of telephone-
administered cognitive-behavioral therapy to reduce post-traumatic stress disorder and distress
M AN U
symptoms after hematopoietic stem-cell transplantation. J Clin Oncol 2010;28:3754-3761. [42] Espie CA, Fleming L, Cassidy J, et al. Randomized controlled clinical effectiveness trial of cognitive behavioral therapy compared with treatment as usual for persistent insomnia in patients with cancer. J Clin Oncol 2008;26:4651-4658.
[43] Gielissen MF, Verhagen S, Witjes F, Bleijenberg G. Effects of cognitive behavior therapy in
TE D
severely fatigued disease-free cancer patients compared with patients waiting for cognitive behavior therapy: a randomized controlled trial. J Clin Oncol 2006;24:4882-4887. [44] Gil KM, Mishel MH, Belyea M, Germino B, Porter LS, Clayton M. Benefits of the uncertainty
EP
management intervention for African American and white older breast cancer survivors: 20 month outcomes. Int J Behav Med 2006;13:286-294.
AC C
[45] Kroenke K, Theobald D, Wu J, et al. Effect of telecare management on pain and depression in patients with cancer: a randomized trial. JAMA 2010;304:163-171. [46] Lengacher CA, Johnson-Mallard V, Post-White J, et al. Randomized controlled trial of mindfulness-based stress reduction (MBSR) for survivors of breast cancer. Psychooncology 2009;18:1261-1272. [47] Marcus AC, Garrett KM, Cella D, et al. Can telephone counseling post-treatment improve psychosocial outcomes among early stage breast cancer survivors? Psychooncology 2010;19:923-932.
25
ACCEPTED MANUSCRIPT
[48] Meneses KD, McNees P, Loerzel VW, Su X, Zhang Y, Hassey LA. Transition from treatment to survivorship: effects of a psychoeducational intervention on quality of life in breast cancer survivors. Oncol Nurs Forum 2007;34:1007-1016.
RI PT
[49] Penedo FJ, Molton I, Dahn JR, et al. A randomized clinical trial of group-based cognitivebehavioral stress management in localized prostate cancer: development of stress management skills improves quality of life and benefit finding. Ann Behav Med 2006;31:261-270.
SC
[50] Penedo FJ, Traeger L, Dahn J, et al. Cognitive behavioral stress management intervention improves quality of life in Spanish monolingual Hispanic men treated for localized prostate
M AN U
cancer: results of a randomized controlled trial. Int J Behav Med 2007;14:164-172. [51] Scheier MF, Helgeson VS, Schulz R, et al. Interventions to enhance physical and psychological functioning among younger women who are ending nonhormonal adjuvant treatment for early-stage breast cancer. J Clin Oncol 2005;23:4298-4311. [52] Scheier MF, Helgeson VS, Schulz R, et al. Moderators of interventions designed to
TE D
enhance physical and psychological functioning among younger women with early-stage breast cancer. J Clin Oncol 2007;25:5710-5714.
[53] Ritterband LM, Bailey ET, Throndike FP, Lord HR, Farrell-Carnahan L, Baum LD. Initial
EP
evaluation of an internet intervention to improve the sleep of cancer survivors with insomnia. Psychooncology 2012;21:695-705.
AC C
[54] Halpern MT, Viswanathan M, Evans TS, Birken SA, Basch E, Mayer DK. Models of cancer survivorship care: overview and summary of current evidence. J Oncol Pract 2014; Epub ahead of print.
26
ACCEPTED MANUSCRIPT
Table 1. Areas for Assessment of Quality of Life Survivorship
Comorbidity
•
Symptom burden
•
Physical function
•
Concern for long-term and late effects
•
Cardiac and lung problems
•
Osteoporosis
•
Sexual infertility and menopausal issues
•
Lymphedema
•
Renal insufficiency
•
Bowel and bladder problems
M AN U
Psychological and Neurological
SC
•
Cognitive changes (memory and attention)
•
Mood change
•
Body image
•
Anxiety/ worry
•
Uncertainty
•
Fear of recurrence
•
Post-traumatic stress disorder
•
Decline in emotional well-being
EP
TE D
•
Social
RI PT
Physical
•
Changing role relationships with family
•
Work performance and unemployment
• • •
AC C
Financial Status
Altered social support Sexual concerns Isolation
27
ACCEPTED MANUSCRIPT
Figure 1. Framework for assessment and management of long-term and late effects [22] Assessment of End of Active Treatment
Post-Treatment Management
Quality of Life Outcomes
• Age • Sex • Ethnic & Culture background • Cancer site, stage • Comorbidity • Cancer treatment (type & duration) • Family participation in posttreatment care • Family support & resources • Financial status • Employment status
• Comprehensive risk assessment including: • Need for Information Patient engagement in care • Depression/anxiety/fear/ worry/ uncertainty • Lingering/ residual symptoms (Pain/sleep/fatigue etc.) • Long term effects: • Peripheral neuropathy • Lymphedema • Neuro-Cognitive function • Osteoporosis • Physical function • Emotional wellbeing • Social wellbeing • Long term effects: • Late effects • Fertility/Sexual dysfunction • Cardiac & pulmonary problems • Neurological problems • Healthy behaviors & lifestyle practices • Survivorship care plan
• Evaluate and minimize residual, long term and late effects • Monitoring & self-care management • Clarification of provider roles (oncology/ primary care) (Shared care) • Psycho educational support • Technology support • Communication with provider’s guidance • Adopting and adapting healthy behaviors/ healthy lifestyle (prevention) • Symptom management • Provide information • Coordination
• Overall Quality of Life • Physical function • Symptom control • Psychological function • Social function • Financial status • Employment status
AC C
EP
TE D
M AN U
SC
RI PT
Patient and Treatment Characteristi cs
28
ACCEPTED MANUSCRIPT
Table 2. Managing post-treatment care – the nurse’s role Engage patient in monitoring the side-effects, residual and long term
•
Assist patients to develop self-care strategies
•
Symptom management – guidance of strategies for residual, long term and late effects
•
Assist with understanding communication with providers
•
Provide information and guidance for health life style changes and plans
•
Provide guidance for challenges to employment and role adjustments needed for
SC
performance - reflect if needed
Provide guidance for emotional health and wellbeing: uncertainty, anxiety, depression,
M AN U
•
RI PT
•
stigma/body image
Assist with role adjustment for adjustment for family and social role
•
Refer to the best resources for web support and support groups
•
Foster coordination of care – clarify appropriate provider roles – primary care/ oncologist
•
Provide support and guidance for use of electronic medical records, “my chart,” etc.
AC C
EP
TE D
•
29
S0749-2081(14)00090-4
DOI:
10.1016/j.soncn.2014.11.004
Reference:
YSONU 50674
To appear in:
Seminars in Oncology Nursing
Please cite this article as: Given BA, Prevention, Identification, and Management of Late Effects Through Risk Reduction, Seminars in Oncology Nursing (2015), doi: 10.1016/j.soncn.2014.11.004. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT
Prevention, Identification, and Management of Late Effects Through Risk Reduction
SC
RI PT
Seminars in Oncology Nursing
AC C
EP
TE D
M AN U
Barbara A. Given, PhD, RN, FAAN University Distinguished Professor College of Nursing Michigan State University C383 Bott Building 1355 Bogue Street East Lansing MI 48823 [email protected] (517) 355-6526
1
ACCEPTED MANUSCRIPT
Abstract
Objectives: To review the psychosocial factors that affect quality of care and quality of life in
RI PT
cancer survivors, and discuss risk reduction through assessment for the early identification and management of the residual, long-term and late effects.
SC
Data Sources: Literature review on survivorship and intervention strategies.
M AN U
Conclusion: There is limited literature on the psychosocial dimensions of cancer survivorship and even more limited on strategies for care.
Implications: Nurses have a major leadership role in assisting survivors and their families. Much
Key Words
TE D
research is needed to provide the knowledge needed for care.
AC C
strategies
EP
Survivorship, psychosocial dimensions, assessment, residual, long-term and late effects,
2
ACCEPTED MANUSCRIPT
There are nearly 14.5 million cancer survivors in the United States and this number is expected to grow to 19 million by 2024. Each year over 1 million patients join the population of 5-year
RI PT
survivors with more than 1.66 million new cases expected in 2014 [1]. Among cancer survivors, 64% were diagnosed five or more years ago and 15% were diagnosed 20 or more years ago. Only 5% of cancer survivors are younger than 40, while 46% are 70 and older. Survivors’ age
SC
ranges vary by cancer type, for example, 62% of prostate cancer survivors are 70 and older, while 32% of melanoma survivors are in this older age group [2]. Thus, quality of survivorship
M AN U
cancer care should be a major concern across the life span.
Cancer treatments may cause long-term problems for patients in physical, social and psychological areas. How best to care for survivors remains unclear with few existing guidelines or standards for care. Extensive recent focus has been on Survivorship Care Plans (SCP) as
TE D
recommended by the Institute of Medicine; although designed to improve survivor outcomes, there has been limited adoption and general use to date [3-5]. Most SCP’s are limited to screening and diagnostic follow-up, thus limited in bringing about positive patient psychosocial
EP
outcomes. Patients receive little guidance, information and support for what to do as they experience their “new normal” when cancer treatment is over. Patients wonder “what now” and
AC C
are filled with uncertainty about future expectations related to cancer and what to do about residual and persistent effects affecting their quality of life.
This article examines the psychosocial factors that can affect achieving high quality survivorship care and quality of life (QOL) of cancer survivors. Discussion is organized on the transition period from cancer treatment completion, into the post-active treatment period with residual effects, long-term effects (persistent) and subsequent late effects for adults. Assessment and management of patient issues during the survivorship period and strategies for nurses to assist
3
ACCEPTED MANUSCRIPT
patients during the survivorship phase are discussed along with recommendations for future research.
RI PT
Survivor Issues – Screening and Assessment Some patients have residual and long-term effects following the end of treatment and then late effects months or many years later (organ dysfunction such as cardiac or gastrointestinal).
SC
These effects can lead to premature development of age-related changes, an increased risk of developing common comorbidities and altered response to treatment for these existing
M AN U
comorbidities. Cancer and treatment- related changes can increase the risk for long-term mortality. Few studies exist about the trajectories of patients as they move from treatment to the post-treatment period [4,6].
Survivorship care after treatment often is limited to recommendations of surveillance for cancer
TE D
progression, recurrence, or a new cancer. The recommendation of the SCP’s is for screening tests to ascertain the disease status. Health promotion, primary or secondary cancer prevention, emotional health or symptom management need to be considered in these plans –they are often
EP
not mentioned. A comprehensive post-treatment assessment should guide the creation of a post-treatment survivorship care plan and include more than surveillance. It is important to
AC C
consider a comprehensive assessment for the early identification of residual, long-term and late effects. Interventions can then be designed to prevent or reduce the risk of these effects and promote quality of life for the survivors when they do occur. A comprehensive plan serves as a guide and roadmap for patients and their families [4,7].
Background At the end of active treatment cancer survivors should receive a screening and risk assessment to identify residual effects, long-term effects, and identify risks for potential effects based on
4
ACCEPTED MANUSCRIPT
risks from the type and duration of treatment. In addition, health promotion and disease prevention should be considered. An individualized assessment based on patient characteristics such as age, sex, race, ethnicity, health history, employment status, past cancer treatment and
RI PT
comorbidities is needed. The assessment needs to include psychosocial concerns (anxiety and depression), family issues and overall functioning [8]. The frequency (intensity) and duration of screening (period at risk) should be established as active treatment ends and patient needs
SC
exist.
M AN U
Age at the time of cancer treatment may be considered with patients’ response and type of residual and long-term effects. Patients under 45 years of age will respond differently and have different concerns about infertility, body image, sexual dysfunction and persistent pain compared to older patients. Late effects that can affect employment are especially problematic to an employed population. For older individuals, pre-existing and consistent, physical and
TE D
functional status, comorbid conditions along with site and stage of cancer and treatment approach are predictors of residual long-term and late effects.
EP
Those who are younger and have lower levels of education, and those who are unmarried/not partnered at diagnosis report lower QOL during the survivorship period. There appears to be
AC C
racial/ethnic variation in QOL among survivors. Latina women report more physical limitations and African American women report both poorer physical and social well-being but less emotional distress compared with white women [9].
Enhancing health behaviors for the survivor is essential to long-term quality of life. A focus on the patient’s current experiences (symptoms and side effects with respect to lingering persistent physical, residual and psychosocial symptoms) should occur. Genetic counseling and testing may influence risk perception and motivation for engagement in protective health behaviors for
5
ACCEPTED MANUSCRIPT
some of the younger survivors [8]. Health behaviors and lifestyle patterns that will help patients achieve a healthy lifestyle should be determined.
RI PT
Assessing the treatment course is defined by the types, stage of cancer, sequences of treatment (surgery, chemotherapy [infusion or oral targeted agents], or radiation) concurrent or sequenced, the duration of the treatment, and any recurrence or progression. Based on this
SC
dosage and treatment assessment, the risks of late and long-term effects can be determined. Patients should be aware of what to expect and when; by incorporating this in the plan of care, it
M AN U
reduces patient uncertainty [5].
Physical Problems
Physical/medical problems, second cancers, osteoporosis, hypertension, cataracts, cardiovascular disease, obesity, lymphedema, hearing loss, sexual dysfunction, dental
TE D
problems and overall physical functional decline should be considered in the long term. Heart problems may result long-term from chemotherapeutic drugs such as doxorubicin or cyclophosphamide. Radiation to the chest may damage the lungs. Osteoporosis may result from
EP
chemotherapy or steroids as well as hormonal treatment. Menopause and endocrine problems may occur. Chemotherapy and radiation may cause damage to the brain, spinal cord and the
AC C
nervous system. Residual effects such as fatigue, pain, sleep disturbance, peripheral neuropathy and overall symptom burden, altered immune status, bowel and bladder changes can occur (Figure 1). Patients need to be aware of these potential long-term and late effects. Comprehensive assessment shared with them provides this support [4]. [Place Table 1 here]
6
ACCEPTED MANUSCRIPT
Shi and colleagues [10] reported that 92% of survivors reported cancer or cancer-related symptoms that were present even at one year post-treatment termination (25% experienced high symptom burden). Symptoms include pain, fatigue, sleep disturbance, depression and
RI PT
anxiety. Higher related uncertainty among survivors has been shown to be significantly associated with fatigue, insomnia, negative affect and a less positive affect even as long as four years post-treatment [11]. These can contribute to the survivors’ physical health and overall
SC
quality of life.
M AN U
Emotional Health and Well-being
Psychological issues include depression, fear, anxiety, uncertainty, body image, stigma, and intense fear of recurrence. Anxiety, depression and fear are the most common emotional health concerns during the survivorship period declining over time. Prior depression is known to put women with breast cancer at risk for emotional distress during survivorship [9]. Trajectories of
TE D
psychological effects and adjustment years into cancer survivorship need further description.
Survivors in this phase of care often acknowledge that they have many uncertainties, and need
EP
additional information. Lack of information seems to be a major contributor to this uncertainty. Patients need information about: 1) health-related risk for long-term or late effects; 2) symptom
AC C
management for residual and persistent symptoms; 3) fear about recurrence 4) social resources (e.g., legal resources); and 5) ambiguities about family and work roles [8,12].
Survivors may have difficulty interpreting the significance of the symptoms they experience and may fear recurrence with every symptom they experience. Survivors are often unprepared for the persistence of symptoms and limitations and may perseverate over the meaning, fearing progression or recurrence. They are unclear whether the signs and symptoms (especially late effects) are due to a new cancer, a secondary cancer, disease progression, recurrence, or a
7
ACCEPTED MANUSCRIPT
totally different disease (non-cancer) such as heart disease. Survivors can be left without effective methods for addressing their experiences and conclude that they are not recovering as they should. Questions about prognosis are ever present. Assessment should include a
RI PT
determination of specific information needs and areas of uncertainties so strategies to help patients can be identified [13].
SC
Social Areas
Interpersonal relationships, intimacy and communication with others are important areas for
M AN U
assessment and screening. Survivors often have difficulties (ie role adjustment) transitioning back to their normal roles. They are challenged to resume former workplace and family roles often at a time when they are not ready to do this because of lingering and persistent effects or late effects. They are expected to move on and return to “normal” when they may not yet be ready. Understanding the family relationships and expectations is an important feature of the
TE D
assessment that can guide and tailor care [9].
Staying connected with the health care system/Primary Care/Oncologist may be a problematic
EP
area for survivors, as they feel they have lost a valuable safety net - the oncology team. Patients’ concerns about the role of each in primary care versus oncology care should be
AC C
determined and plans should be made to help the patient understand the appropriate source of care for their problems.
The loss of employment or delayed return to work can have a lasting and long term impact on the survivor. Financial burden needs to be determined [14]. Lymphedema from surgery, with the accompanying mobility restrictions, swelling, and discomfort may occur with breast or head and neck cancer or from pelvic radiation. Changes in neurocognitive ability may complicate tasks that were previously routine which may prevent learning new tasks, keeping pace with others
8
ACCEPTED MANUSCRIPT
and increase the risk of work disability [15-17]. Cognitive changes not only influence survivors’ confidence in their ability to return to work, but these changes (working memory, executive function and attention) also negatively impact their job performance [16]. Limitation such as
RI PT
lifting, or endurance and concentrating can lead to employment difficulties. Other difficulties at work occur with physically demanding work tasks. Survivors of cancer of bone or soft tissue may experience the loss of all or a part of a limb that can cause physical or psychological
SC
symptoms. Persistent high symptom burden may affect employment.
M AN U
Survivors, especially minority patients, have a greater risk of being unemployed than noncancer controls [17-19]. Lack of employment impacts quality of life for survivors through access to health insurance, economic stability, and supportive social relationships. Changes in work status with related financial impact should be determined as a part of the assessment. Can survivors meet the expected work demands or are accommodations needed? Specific aspects
aspects of work [20].
TE D
of work should be determined to consider physical, cognitive, emotional and interpersonal
EP
Summary of Risk Assessment
Risk assessments can help to stratify cancer survivors into different levels of intensity of unmet
AC C
needs and risks and provide the needed guidance for follow-up care (see Table 1).
Components needed include elements of treatment, risk of recurrence, persistence of moderate to severe residual effects of therapy, long-term effects, risk of or presence of late effects, and risk of decreased emotional well-being. Information needs, physical function and psychosocial status should be determined. These assessment areas can be organized into a plan of care with a clear direction as to who is responsible for the ongoing care; the oncology team or the primary care team. Mediator variables such as age, sex, race, ethnicity, comorbidity, family support,
9
ACCEPTED MANUSCRIPT
and/or social status may help to identify which survivors are at increased risk for poor outcomes (see Figure 1). Access to and understanding of a comprehensive care plan and available services is a necessity for survivor health, well-being and quality of life [21].
RI PT
[Figure 1 here]
Managing Post-Treatment Survivorship for Patients
SC
Through the assessment and identification of concerns and potential problems with guidance from nurses, a plan for survivorship care can be established to reduce or eliminate risks and
M AN U
manage problems that do occur (see Table 2). What is needed is a codified set by type of unmet needs, physical, emotional and social. Best practices should guide the follow-up and long term care. This plan needs to be directed toward the phases in potential long-term and late effects, in addition to manage existing residual effects at the end of treatment, the plan needs to be written and clear for the patient’s understanding with designation as to which health
TE D
professional will provide the assistance. Survivors need to know who to communicate with and what type and level of symptoms to communicate. Strategies to deal with provider communication should be prioritized according to patients’ residual problems as they exit
EP
treatment. Self-management strategies must be tailored to their unmet needs. Oncology teams and primary care providers should communicate and each be aware of their respective roles for
AC C
sharing care during the survivor period. Patients need to be informed as to what they may expect from each type of provider and what is taken to the primary care provider and what goes to the oncology team. Facilitating communication between providers and patients may be an important role for nurses. [Table 2 here]
As we plan future care for survivors, we can use individual models of patient care, however we also need to look at our systems of care. Table 1 is an example of a model that could be used.
10
ACCEPTED MANUSCRIPT
Is the healthcare resources patients need available? We need to ensure that responsibility of care is assigned whether it is to primary care or the oncology team. Health system coordination is essential. Written treatment summaries and care plans can provide a care roadmap for all.
RI PT
These summaries should clearly delineate which provider is responsible for which aspect of care. Patients should be guided to a clear understanding.
SC
The clinical management during the survivorship trajectory is intended to reduce the risk of negative outcomes and requires collaboration and coordination between the numerous
M AN U
members of the oncologist team and primary care providers. This is needed to ensure quality patient centered post cancer care. It is important to link patient problems and unmet needs with targeted care strategies that have the potential to produce improved patient outcomes either through prevention, risk reduction or planned care management activities. We need to identify desired patient outcomes for survivors at several key time points in the survivorship trajectory.
TE D
Appropriate times should be determined and could be the start of the survivorship period, at 3, 6 and 12 months at minimum which is often the follow up for diagnostic tests. Other times that are
EP
relevant relate to the expected late effects of certain cancers or type of treatment received.
Returning to Health Behaviors and a Healthy Lifestyle
AC C
Patients will need guidance on lifestyle behaviors post-treatment. Currently there is a lack of consensus on how to best help cancer survivors adopt and maintain a healthy life style. Recommendations for a heart-healthy lifestyle (diet, exercise, weight control) is recommended [23]. Control of comorbid conditions like hypertension and diabetes is a concern for management and needs to include the primary care providers.
11
ACCEPTED MANUSCRIPT
Interventions for health behaviors (e.g., physical activity, diet and smoking cessation) after cancer treatment can produce benefits across a number of outcomes that include physical
RI PT
functional status, weight control and mental health, [24-26] as well as overall quality of life [27].
Physical Activity
Cancer survivors can experience a positive outcome in time to return to work and in work
SC
performance with a moderate level physical exercise [23,28,29]. It has been demonstrated that moderately intense exercise may safely be performed by cancer survivors [23,29]. Beneficial
M AN U
effects from physical activity occur in health-related quality of life for emotional well-being, sleep, sexuality, anxiety, pain, fatigue, distress, fitness and energy level, aerobic fitness, strength and social functioning [30]. Some patients may need to be instructed and guided in proper physical activities by rehabilitation and occupational therapy specialists.
TE D
Survivors should maintain a healthy weight; diet recommendations may be needed [25]. Health promotion efforts need to address the survivors’ perception on weight since there is a high rate of obesity in individuals with breast, prostate and colorectal cancers. The American Cancer
EP
Society guidelines advocate that cancer survivors maintain a healthy weight [23]. Strategies for promoting bone health including osteoporosis prevention, and exercise to prevent physical
AC C
decline should be considered. Smoking cessation and tobacco control should be considered if appropriate. Alcohol moderation will be needed for some patients. Sexual and reproductive health are other areas to be considered. There are no standard practice guidelines for these health behaviors currently. Existing guidelines for other phases of cancer care should be considered for adaptation and for implementation at this phase [24]. It has been shown that individuals who make favorable changes in these lifestyle factors after cancer diagnosis feel better, experience less fatigue, and may possibly even decrease risk of cancer recurrence [24]. TheAmerican Cancer Society (ACS) recommends general healthy behaviors should be stressed
12
ACCEPTED MANUSCRIPT
to improve health and QOL survival. Lifestyle Changes that Make a Difference is an ACS booklet available for patients [23,31]
RI PT
Clinicians need to provide education to survivors about their individual risk for recurrence. Patients benefit from receiving information about strategies to alleviate and/or manage their fear about recurrence [9]. They need guidance to differentiate a comorbid problem from that of
SC
persistent treatment effects. Understanding the symptoms can help reduce some of the fear and
Emotional Health and Well-Being
M AN U
uncertainty.
Patients with continued anxiety and depression should be referred to appropriate mental health services. Continued anxiety, depression and constant worry can affect the patient’s emotional well-being and has to be considered a late effect of cancer treatment [9,32]. Use of active
TE D
coping strategies such as problem solving, identifying benefits in the cancer experience, and expressing emotions related to cancer can bolster psychological adjustment and contribute to
EP
the patient’s QOL.
Fear and uncertainty about recurrence consistently ranks among the most pressing concerns
AC C
identified by cancer survivors and may persist for years. Patients benefit from education and guidance about actual cancer recurrence risk and tailored strategies to manage this worry. Counseling for those with anxiety, worry and depression should be considered [9].
Coordination and Collaboration Based on a comprehensive assessment and the development of a survivorship care plan, planned follow-up and intervention can be used to clarify provider roles (primary care vs. oncology) and needed follow-up care for patients. Patients should be prepared for the
13
ACCEPTED MANUSCRIPT
appropriate risk of the long-term and late effects that are expected to occur. We need to remember the plan of care is for the patient thus patient and family education and self-advocacy are necessary to enable patient self-care management. Patients should be assisted to develop
RI PT
their self-care skills. Nurses, whether in oncology practices or primary care, can have an important role in the collaboration and coordination of care (shared care) between and among providers and the patient and family. Patients in survivorship phase with high levels of providers’
SC
collaboration have lower rates of hospitalization due to higher dimensions of quality of care compared to these patients with low levels of collaboration among providers [32]. Shared care
M AN U
and collaboration is essential if the patient is to have the most support. Nurses can help make this coordination and collaboration a reality using the assessment and plan of care. Patients may need assistance to understand how their care will be shared and coordinated.
Symptom Risk Reduction and Management
TE D
Residual symptom burden has been shown to be related to post-cancer employment. Symptom clusters (typically fatigue, pain, sleep insufficiency, distress and depression) are commonly reported in the survivorship period [11]. Participants reporting moderate or greater interference
EP
from symptoms had eight times the odds of reporting that they were no longer working as their less-affected counterparts, thus helping with symptom management is a priority. Residual
AC C
symptoms at the end may be targets for intervention to improve work outcomes [17,18]. Sikorskii and colleagues [33] reported that 50% of patients reported a mean of 6.8 symptoms at the time of completion of cancer therapy. These rates were twice as high among patients who reported clinical indicators of depression along with two or more comorbid conditions. Thus for post-treatment, intervention needs to include symptom management. Patients need strategies to deal with the symptoms, to know what is important to report and when to report them to providers. They will need guidance to distinguish between residual and long-term effects compared to disease progression, recurrence or a second cancer.
14
ACCEPTED MANUSCRIPT
As patients leave the treatment period, they are often uncertain who is to provide what care. This uncertainty accentuates an already stressful time. As they transition into the post-treatment
RI PT
period patients describe fear and uncertainty about the coordination of care and whether they will be monitored at sufficiently frequent intervals to identify progression or new disease [12]. Some major cancer centers have survivorship clinics that assist with this, however at this point,
SC
this is available to a minority of patients [7]. Charged with accelerating progress to address the needs of cancer survivors, the LIVESTRONG Survivorship Centers of Excellence have initiated
M AN U
approaches to support patients and their families [34].
Patients’ overall uncertainty may benefit from informational interventions [11]. Educational interventions can help to reduce uncertainties for survivors to understand risk of recurrence, long term and late effect. Patients and their families need to be educated in survivorship
TE D
surveillance and management of sequelae [7,9,35]. Treatment summaries tailored to individual needs can increase patient knowledge, serve as a reference, and provide reassurance and
EP
reduce uncertainties.
Specific web sites and other resources can be recommended [7]. The American Society of
AC C
Clinical Oncology (ASCO) patient education web site, Cancer.net, has a section devoted to survivorship [35]. Included in the Cancer.net content is the ASCO downloadable booklet on survivorship, “Cancer Survivorship: Next Steps for Patients and Their Families” which should be provided as a resource for patients. Building and refining the patient’s knowledge base the survivorship period should help to maximize psychosocial quality of life.
Social Support
15
ACCEPTED MANUSCRIPT
The various sources and types of support (e.g., family, provider, informational, decisional, and emotional) may help survivors meet their needs over time. Janz and colleagues [9] found that women with more declines in emotional well-being reported low support from health care
RI PT
providers, compared with women who reported high support. Similar trends were observed for family/partner and friends/coworker support. Social isolation and lack of social support intensify quality of life deficits in cancer survivors. Nurses can assist patients to seek the needed support.
SC
If lack of social support exists, web-based support groups, or the Cancer Support Community
M AN U
program may be beneficial [36,37].
Patients may need guidance to prepare for role adjustment if they have permanent physical or cognitive limitations. At times, helping them to manage residual or new symptoms will enable them to continue roles such as their work and family roles.
TE D
Even if the cancer centers dismisses patients to primary care they can be connected to a resource such as ASCO, ACS, National Cancer Institute (NCI), and Oncology Nursing Society (ONS) where information is provided. Patients must become engaged participants in their care.
EP
Nurses are key to providing guidance for them.
AC C
Survivorship care depends on the patient and family working together. Caregivers have their own response to this period in the cancer trajectory. Nurses need to realize that they may need their own guidance and support. The caregiver role in survivorship should be a part of the risk assessment and plan of care [38].
Self-Management Skills Patients need information and self-management skills to address their concerns and assist them to develop their own self-care skills as they return to the post-treatment phase. To
16
ACCEPTED MANUSCRIPT
recover/maintain physical and psychological function and role function, patients will need to acquire and use self-care management strategies tailored to their capacity [13,22]. Studies on cognitive-behavioral, stress management (e.g., relaxation, mindfulness), symptom
RI PT
management, and psychoeducational interventions geared toward survivorship issues during the re-entry phase are limited.
SC
Post-treatment symptoms are amenable to intervention using the evidence based interventions of cognitive, behavioral and psychoeducational approaches. Numerous evidence-based
M AN U
interventions for symptom management exist and this can be adapted for the survivorship period [32].
Randomized trials that do exist indicate that interventions offered at re-entry (primarily breast and prostate studies) can be effective. These can confer benefits in such domains as
TE D
depressive symptoms, physical functioning, fatigue, sleep disturbances, fear of recurrence, pain, sexual health, menopausal symptoms, post-traumatic stress symptoms and general quality of life [39-52]. Survivorship care should focus on preventing problems or alleviated
EP
problems using and adapting evidence-based strategies known to work [21].
AC C
E-health and M-health strategies can be used to guide patients through computer-assisted decision support systems to monitor their symptoms and side effects, or to provide social support. Post-treatment care can be made efficient through the use of strategies to monitor patient status. With electronic medical records patients could report in their electronic medical record so that provider teams could monitor patients’ path through survivorship. The internet and other efficient delivery modalities hold promise when nurse resources are limited. An internet-based cognitive-behavioral intervention to improve symptoms in cancer survivors demonstrated positive effects [53]. Automated symptom monitoring and centralized telephone
17
ACCEPTED MANUSCRIPT
care management resulted in significant reductions in survivors [45]. Apps could be used for patient monitoring.
RI PT
Future Research The role of health behaviors (e.g., adherence to therapies, cancer prevention, and screening) as well as other healthy behaviors in preventing cancer recurrence and improving quality of life
SC
require additional controlled trials.
More research is needed to assess the benefits of control of comorbid conditions. Do
M AN U
comorbidities cause more long-term, late cancer and cancer treatment effects? We need a better understanding of who is at risk for negative post-treatment outcomes. Risk models are needed to identify resources needed for the transition care.
There is limited information on the patterns of residual symptoms or functional limitations
TE D
experienced by patients as they complete treatment. There is little description of prevalence of problems immediate post-treatment, how long these problems persist and their severity of duration as they impact patients’ QOL. Studies are needed to address methods to assist
EP
patients in monitoring and managing their residual problems.
AC C
Research also is needed to identify for whom and under what conditions psychosocial and behavioral interventions are most effective (ie, moderators of effects) and when in the survivorship trajectory they are more beneficial. The appropriate psychosocial care can be targeted and tailored at appropriate intervals for those with unmet needs.
More research on survivorship with diverse groups is needed to determine how needs differ. Disparities in access to important information and appropriate providers affect QOL as well as
18
ACCEPTED MANUSCRIPT
quality of care. Types of cancer and varied treatment follow-up beyond breast and prostate cancer is needed to understand the diversity of needs.
RI PT
Lifestyle factors are increasingly being implicated in cancer prognosis. Obesity, inactivity, poor dietary quality, and continued smoking after cancer diagnosis have all been linked to increased risk of cancer recurrence and mortality. A few interventional studies have demonstrated that
SC
behavior change after cancer diagnosis is achievable. Trials are needed to test the impact of purposeful weight loss, dietary modification, and increased physical activity on length of residual
M AN U
effects and risk of disease recurrence.
Timing for survivorship care should be a component of future research. When should a plan be integrated, for how long? What is the optional follow up period [54]? What are the set of outcomes examined for survivors? What beyond disease status should be used to describe their
TE D
health status [54]?
Much of the data on late and long-term cancer effects is based on studies that do not include
EP
older adults, especially those with any comorbidities. Although older adults are the majority of those diagnosed with cancer there are few guidelines specific to this population. A research
AC C
emphasis regarding the impact of long term and late effects is critically needed.
Clarification and designation of the provider role or the shared care model should be ongoing as the survivorship period continues. Research is needed to document the benefit of the various approaches to follow-up – the shared care with primary care and oncology both coordinating the care vs a model with each separately providing patient care. What are the patient outcomes?
19
ACCEPTED MANUSCRIPT
In addition to having a SCP for all patients, we need to develop evidenced-based practice guidelines and test their effectiveness for those with residual persistent problems, long-term and late effects. Clinical trials are needed to test the effectiveness on patient outcomes. Current
RI PT
guidelines are often consensus based.
Payment considerations might be a barrier to survivorship care. Research is needed to
SC
determine if this is true and to understand resource use during this phase of cancer care needs.
M AN U
Studies need to provide information on those from underserved populations. Do the care models provide culturally sensitive approaches of care?
Conclusion
Nurses can take the lead and assume the responsibility for an assessment that in addition to
TE D
disease and treatment follow- up include the psychosocial, comorbidity and QOL issues. Nurses can promote patient health and ensure a focus on enhancing post-treatment lifestyle as well. What role adjustment support do patients need? Whether nurses are in oncology or primary
EP
care or work in cancer centers, they can take on this role and facilitate communication and
AC C
collaboration for the coordination of care.
Nurses and nurse practitioners in both primary care and oncology care can step up and assume leadership for the survivorship period. Only through attention to the existing and potential problems can survivors have overall quality of life after a cancer diagnosis and treatment.
20
ACCEPTED MANUSCRIPT
References: [1] DeSantis CE, Lin CC, Mariotto AB, et al. Cancer treatment and survivorship statistics, 2014. CA Cancer J Clin 2014;64:252-271.
RI PT
[2] Siegel R, Naishadham D, Jemal A. Cancer statistics for Hispanics/Latinos. CA Cancer J Clin 2012;62:283-298.
[3] Barton MK. Oncologists and primary care physicians infrequently provide survivorship care
SC
plans. CA Cancer J Clin 2014;64:291-292.
[4] Earle CC, Deevy J. Cancer survivorship: monitoring the long-term and late effects of
M AN U
treatment, in: Johnson FE, Maehara Y, Browman GP, et al, editors. Patient Surveillance after Cancer Treatment. New York: Humana Press; 2013: pp. 31-37.
[5] Hewitt M, Greenfield S, Stovall E, editors. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press: 2006. Available at: http://www.nap.edu/openbook.php?record_id=11468&page=R1
TE D
[6] Ganz PA, Guadagnoli E, Landrum MB, Lash TL, Rakowski W, Silliman RA. Breast cancer in older women: quality of life and psychosocial adjustment in the 15 months after diagnosis. J Clin Oncol 2003;21:4027-4033.
EP
[7] Nissen MJ, Tsai ML, Blaes AH, Swenson KK, Koering S. Effectiveness of treatment summaries in increasing breast and colorectal cancer survivors’ knowledge about their
AC C
diagnosis and treatment. J Cancer Surviv 2013;7:211-218. [8] Ashing-Giwa K, Tapp C, Brown S, et al. Are survivorship care plans responsive to AfricanAmerican breast cancer survivors?: voices of survivors and advocates. J Cancer Surviv 2013;7:283-291.
[9] Janz NK, Friese CR, Li Y, Graff JJ, Hamilton AS, Hawley ST. Emotional well-being years post-treatment for breast cancer: prospective, multi-ethnic, and population-based analysis. J Cancer Surviv 2014;8:131-142.
21
ACCEPTED MANUSCRIPT
[10] Shi Q, Smith TG, Michonski JD, Stein KD, Kaw C, Cleeland CS. Symptom burden in cancer survivors 1 year after diagnosis: a report from the American Cancer Society’s studies of cancer survivors. Cancer 2011;117:2779-2790.
RI PT
[11] Hall DL, Mishel MH, Germino BB. Living with cancer-related uncertainty: associations with fatigue, insomnia, and affect in younger breast cancer survivors. Support Care Cancer 2014;22:2489-2495.
SC
[12] Miller LE. Sources of uncertainty in cancer survivorship. J Cancer Surviv 2012;6:431-440. [13] Kent EE, Arora NK, Rowland JH, et al. Health information needs and health-related quality
M AN U
of life in a diverse population of long-term cancer survivors. Patient Educ Couns 2012;89:345352.
[14] Fenn KM, Evan SB, McCorkle R, et al. Impact of financial burden of cancer on survivors’ quality of life. J Oncol Pract 2014; Epub ahead of print.
[15] Mehnert A, de Boer A, Feuerstein M. Employment challenges for cancer survivors. Cancer
TE D
2013;119:2151-2159.
[16] Ottati A, Feuerstein M. Brief self-report measure of work-related cognitive limitations in breast cancer survivors. J Cancer Surviv 2013;7:262-273.
EP
[17] Tevaarwerk AJ, Lee JW, Sesto ME, et al. Employment outcomes among survivors of common cancers: the Symptom Outcomes and Practice Patterns (SOAPP) study. J Cancer
AC C
Surviv 2013;7:191-202.
[18] Bradley CJ, Wilk A. Racial differences in quality of life and employment outcomes in insured women with breast cancer. J Cancer Surviv 2014;8:49-59. [19] Harrington CB, Hansen JA, Moskowitz M, Todd L, Feuerstein M. It’s not over when it’s over: long-term symptoms in cancer survivors-a systemic review. Int J Psychiatry Med 2010;40:163181.
22
ACCEPTED MANUSCRIPT
[20] Moskowitz MC, Todd BL, Chen R, Feuerstein M. Function and friction at work: a multidimensional analysis of work outcomes in cancer survivors. J Cancer Surviv 2014;8:173182.
RI PT
[21] McNeil C. Promoting health behaviors among cancer survivors. ASCO Post 2014;5. Available at: http://www.ascopost.com/issues/may-15,-2014/promoting-health-behaviorsamong-cancer-survivors.aspx (accessed June 23, 2014).
SC
[22] Given CW, Given BA. Symptom Management and psychosocial outcomes following cancer. Semin Oncol. 2013;40:774-783.
M AN U
[23] American Cancer Society. Lifestyle changes that make a difference: nutrition and physical activity guidelines for cancer survivors. Atlanta, GA: American Cancer Society; 2012. Available at: http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc037186.pdf (accessed July 25, 2014)
[24] Demark-Wahnefried W, Morey MC, Sloane R, et al. Reach out to enhance wellness home-
TE D
based diet-exercise intervention promotes reproducible and sustainable long-term improvements in health behaviors, body weight, and physical functioning in older, overweight/obese cancer survivors. J Clin Oncol 2012;30:2354-2361.
EP
[25] Ligibel J. Lifestyle factors in cancer survivorship. J Clin Oncol 2012;30:3697-3704. [26] Moye J, Langdon M, Jones JM, Haggstrom D, Naik AD. Managing health care after cancer
AC C
treatment: a wellness plan. Federal Practitioner 2014;31:24S-29S. [27] LeMasters TJ, Madhavan SS, Sambamoorthi U, Kurian S. Health behaviors among breast, prostate, and colorectal cancer survivors: a US population-based case-control study, with comparisons by cancer type and gender. J Cancer Surviv 2014;8:336-348. [28] de Boer AG, Taskila T, Tamminga SJ, Frings-Dresen MHW, Feuerstein M, Verbeek JH. Interventions to enhance return-to-work for cancer patients (review). Cochrane Database Syst Rev 2011;2:CD007569.
23
ACCEPTED MANUSCRIPT
[29] Schmitz KH, Courneya KS, Matthews C, et al. American College of Sports Medicine roundtable on exercise guidelines for cancer survivors. Med Sci Sports Exerc 2010;42:14091426.
cancer survivors’ experiences. J Cancer Surviv 2013;7:237-246.
RI PT
[30] Groeneveld IF, de Boer AG, Frings-Dresen MH. Physical exercise and return to work:
[31] Kushi LH, Doyle C, McCullough M, et al. American Cancer Society guidelines on nutrition
SC
and physical activity for cancer prevention. CA Cancer J Clin 2012;62:30-67.
[32] Pollack CE, Frick KD, Herbert RJ, et al. It’s who you know: patient-sharing, quality, and
M AN U
costs of cancer survivorship care. J Cancer Surviv 2014;8:156-166.
[33] Sikorskii A, Given CW, You M, Jeon S, Given BA. Response analysis for multiple symptoms revealed differences between arms of a symptom management trial. J Clin Epidemiol 2009;62:716-724.
[34] LIVESTRONG Survivorship Centers of Excellence. Available at:
TE D
http://www.livestrong.org/what-we-do/our-actions/programs-partnerships/livestrong-survivorshipcenters-of-excellence/ (accessed September 12, 2014). [35] American Society of Clinical Oncology. Cancer survivorship: next steps for patients and
EP
their families. Alexandria, VA: ASCO; 2011. Available at: http://www.cancer.net/sites/cancer.net/files/vignette/Cancer_Survivorship.pdf (accessed July 20,
AC C
2014).
[36] National Cancer Institute. Facing Forward: Life after Cancer Treatment. May 2014. http://www.cancer.gov/cancertopics/coping/life-after-treatment [37] National Coalition for Cancer Survivorship. Available at: http://www.canceradvocacy.org/ (accessed July 20, 2014). [38] National Cancer Institute. Survivorship - Living With and Beyond Cancer. Available at: http://www.cancer.gov/cancertopics/coping/survivorship (accessed September 12, 2014).
24
ACCEPTED MANUSCRIPT
[39] Broderick JM, Guinan E, Kennedy MJ, et al. Feasibility and efficacy of a supervised exercise intervention in de-conditioned cancer survivors during the early survivorship phase: the PEACH trial. J Cancer Surviv 2013;7:551-562.
RI PT
[40] Dolbeault S, Cayrou S, Bredart A, et al. The effectiveness of a psycho-educational group after early-stage breast cancer treatment: results of a randomized French study. Psychooncology 2009;18:647-656.
SC
[41] DuHamel KN, Mosher CE, Winkel G, et al. Randomized clinical trial of telephone-
administered cognitive-behavioral therapy to reduce post-traumatic stress disorder and distress
M AN U
symptoms after hematopoietic stem-cell transplantation. J Clin Oncol 2010;28:3754-3761. [42] Espie CA, Fleming L, Cassidy J, et al. Randomized controlled clinical effectiveness trial of cognitive behavioral therapy compared with treatment as usual for persistent insomnia in patients with cancer. J Clin Oncol 2008;26:4651-4658.
[43] Gielissen MF, Verhagen S, Witjes F, Bleijenberg G. Effects of cognitive behavior therapy in
TE D
severely fatigued disease-free cancer patients compared with patients waiting for cognitive behavior therapy: a randomized controlled trial. J Clin Oncol 2006;24:4882-4887. [44] Gil KM, Mishel MH, Belyea M, Germino B, Porter LS, Clayton M. Benefits of the uncertainty
EP
management intervention for African American and white older breast cancer survivors: 20 month outcomes. Int J Behav Med 2006;13:286-294.
AC C
[45] Kroenke K, Theobald D, Wu J, et al. Effect of telecare management on pain and depression in patients with cancer: a randomized trial. JAMA 2010;304:163-171. [46] Lengacher CA, Johnson-Mallard V, Post-White J, et al. Randomized controlled trial of mindfulness-based stress reduction (MBSR) for survivors of breast cancer. Psychooncology 2009;18:1261-1272. [47] Marcus AC, Garrett KM, Cella D, et al. Can telephone counseling post-treatment improve psychosocial outcomes among early stage breast cancer survivors? Psychooncology 2010;19:923-932.
25
ACCEPTED MANUSCRIPT
[48] Meneses KD, McNees P, Loerzel VW, Su X, Zhang Y, Hassey LA. Transition from treatment to survivorship: effects of a psychoeducational intervention on quality of life in breast cancer survivors. Oncol Nurs Forum 2007;34:1007-1016.
RI PT
[49] Penedo FJ, Molton I, Dahn JR, et al. A randomized clinical trial of group-based cognitivebehavioral stress management in localized prostate cancer: development of stress management skills improves quality of life and benefit finding. Ann Behav Med 2006;31:261-270.
SC
[50] Penedo FJ, Traeger L, Dahn J, et al. Cognitive behavioral stress management intervention improves quality of life in Spanish monolingual Hispanic men treated for localized prostate
M AN U
cancer: results of a randomized controlled trial. Int J Behav Med 2007;14:164-172. [51] Scheier MF, Helgeson VS, Schulz R, et al. Interventions to enhance physical and psychological functioning among younger women who are ending nonhormonal adjuvant treatment for early-stage breast cancer. J Clin Oncol 2005;23:4298-4311. [52] Scheier MF, Helgeson VS, Schulz R, et al. Moderators of interventions designed to
TE D
enhance physical and psychological functioning among younger women with early-stage breast cancer. J Clin Oncol 2007;25:5710-5714.
[53] Ritterband LM, Bailey ET, Throndike FP, Lord HR, Farrell-Carnahan L, Baum LD. Initial
EP
evaluation of an internet intervention to improve the sleep of cancer survivors with insomnia. Psychooncology 2012;21:695-705.
AC C
[54] Halpern MT, Viswanathan M, Evans TS, Birken SA, Basch E, Mayer DK. Models of cancer survivorship care: overview and summary of current evidence. J Oncol Pract 2014; Epub ahead of print.
26
ACCEPTED MANUSCRIPT
Table 1. Areas for Assessment of Quality of Life Survivorship
Comorbidity
•
Symptom burden
•
Physical function
•
Concern for long-term and late effects
•
Cardiac and lung problems
•
Osteoporosis
•
Sexual infertility and menopausal issues
•
Lymphedema
•
Renal insufficiency
•
Bowel and bladder problems
M AN U
Psychological and Neurological
SC
•
Cognitive changes (memory and attention)
•
Mood change
•
Body image
•
Anxiety/ worry
•
Uncertainty
•
Fear of recurrence
•
Post-traumatic stress disorder
•
Decline in emotional well-being
EP
TE D
•
Social
RI PT
Physical
•
Changing role relationships with family
•
Work performance and unemployment
• • •
AC C
Financial Status
Altered social support Sexual concerns Isolation
27
ACCEPTED MANUSCRIPT
Figure 1. Framework for assessment and management of long-term and late effects [22] Assessment of End of Active Treatment
Post-Treatment Management
Quality of Life Outcomes
• Age • Sex • Ethnic & Culture background • Cancer site, stage • Comorbidity • Cancer treatment (type & duration) • Family participation in posttreatment care • Family support & resources • Financial status • Employment status
• Comprehensive risk assessment including: • Need for Information Patient engagement in care • Depression/anxiety/fear/ worry/ uncertainty • Lingering/ residual symptoms (Pain/sleep/fatigue etc.) • Long term effects: • Peripheral neuropathy • Lymphedema • Neuro-Cognitive function • Osteoporosis • Physical function • Emotional wellbeing • Social wellbeing • Long term effects: • Late effects • Fertility/Sexual dysfunction • Cardiac & pulmonary problems • Neurological problems • Healthy behaviors & lifestyle practices • Survivorship care plan
• Evaluate and minimize residual, long term and late effects • Monitoring & self-care management • Clarification of provider roles (oncology/ primary care) (Shared care) • Psycho educational support • Technology support • Communication with provider’s guidance • Adopting and adapting healthy behaviors/ healthy lifestyle (prevention) • Symptom management • Provide information • Coordination
• Overall Quality of Life • Physical function • Symptom control • Psychological function • Social function • Financial status • Employment status
AC C
EP
TE D
M AN U
SC
RI PT
Patient and Treatment Characteristi cs
28
ACCEPTED MANUSCRIPT
Table 2. Managing post-treatment care – the nurse’s role Engage patient in monitoring the side-effects, residual and long term
•
Assist patients to develop self-care strategies
•
Symptom management – guidance of strategies for residual, long term and late effects
•
Assist with understanding communication with providers
•
Provide information and guidance for health life style changes and plans
•
Provide guidance for challenges to employment and role adjustments needed for
SC
performance - reflect if needed
Provide guidance for emotional health and wellbeing: uncertainty, anxiety, depression,
M AN U
•
RI PT
•
stigma/body image
Assist with role adjustment for adjustment for family and social role
•
Refer to the best resources for web support and support groups
•
Foster coordination of care – clarify appropriate provider roles – primary care/ oncologist
•
Provide support and guidance for use of electronic medical records, “my chart,” etc.
AC C
EP
TE D
•
29