Awareness of the Needs of Cancer Survivors

Since 2006, Nekhlyudov said there has been an increase in programs dedicated to cancer survivorship. Public awareness has also been raised as public officials, actors, and newsmakers have shared their survivorship experiences. In addition, information about survivorship is increasingly available through books (Coscarelli et al., 2011; Feuerstein, 2007; Ganz, 2007; Miller, 2010; O'Dell and Stubblefield, 2009), special reports (IOM, 2007), conferences, survivorship guidelines, and survivor advocacy organizations. However, Nekhlyudov said that information about survivorship has not been uniformly transferred to community and academic health care settings. Ganz added that although some public attention is paid to the concerns of cancer survivors, many survivors remain unaware of their risk of recurrence and late effects, and have no plan for follow-up care.

Survivorship Care Plans

As described in From Cancer Patient to Cancer Survivor, the survivorship care plan is a vehicle to facilitate informed communications between the patient and the care team (IOM and NRC, 2006). In discussing the need for survivorship care plans, Ganz indicated that clinicians can benefit from knowing the types of cancer treatment the survivor had, the potential late effects associated with those treatments, and their expected time course. For example, if a survivor had radiation directed to the chest, any clinician seeing the survivor needs to know about the risk of cardiac late effects. The risks of late effects need to be communicated to the survivor as well, in a way that he or she can understand, said Ganz. She emphasized that the ideal care plan also includes steps for positive health promotion and disease prevention, noting that patients find this to be empowering as it represents an aspect of their health care that they can control.

Ganz discussed survivorship care plans in the context of the Chronic Care Model, an evidence-based, conceptual framework that “describes changes to the health care system that help practices—particularly those in primary care settings—to improve outcomes among patients with chronic illness” (Epping-Jordan et al., 2004). She said an important finding in From Cancer Patient to Cancer Survivor was that the Chronic Care Model applies to the care of cancer survivors because nearly all of them need chronic monitoring and follow-up. The model posits that the quality of care benefits from an interaction between the community (e.g., resources and policies) and the health systems organization of health care (e.g., self-management support, delivery systems design, decision support, clinical information systems) (see Figure 2). Ganz noted that the advent of many electronic tools should make these communications easier than they were more than a decade ago.

FIGURE 2

Integrating the survivorship care plan in the Chronic Care Model. SOURCES: Ganz presentation, July 25, 2017; adapted by permission from BMJ Publishing Group Limited. Improving the quality of health care for chronic conditions. Epping-Jordan, J., S. Pruitt, (more...)

Nekhlyudov explained that the use of survivorship care plans has been facilitated by care plan toolkits available from several organizations,⁴ such as the American Society of Clinical Oncology (ASCO), Journey Forward, and Oncolink, as well as by the Commission on Cancer (CoC) standard requiring organizations to provide a survivorship care plan to cancer patients completing treatment. Nekhlyudov said that “care plans cannot be just a piece of paper;” to be effective, a focus on the care planning process is essential (Earle, 2006; Parry et al., 2013). In developing a survivorship care plan, Ganz said there is some uncertainty about when the process should start. For example, when providing follow-up for a patient with a high-grade lymphoma, the clinician might be inclined to wait 12 to 18 months in case the cancer recurs. For patients with breast cancer, some clinicians are comfortable preparing a care plan when women have finished their primary treatment and are starting endocrine therapy. Ganz noted that this represents a good time to talk about wellness and adherence to medications. She added that it can be difficult to discuss health promotion and disease prevention when the patient's prognosis is uncertain.

Nekhlyudov acknowledged that the provision of a survivorship care plan is not routine among clinician practices. She said the reasons for the lack of widespread adoption include the time and labor needed to prepare care plans and a lack of research on the impact of survivorship care plans on patient outcomes (Brennan et al., 2014; Klemanski et al., 2016; Mayer et al., 2015; Spears et al., 2017). She noted that research about the effectiveness of care plans is under way.

Clinical Practice Guidelines for Cancer Survivorship Care

Ganz said that in 2006, there were few clinical practice guidelines on follow-up care for survivors, and health care professionals generally lacked survivorship education and training. Ganz observed that while progress has been made in this regard, professional education and training in survivorship is often still inadequate, and current survivorship care guidelines vary, which can leave clinicians uncertain about follow-up care. Nekhlyudov said that, increasingly, guidelines have become evidence based, and efforts are under way to harmonize international guidelines. Nonetheless, she said many disease-based guidelines do not fully recognize and highlight the complex needs of cancer survivors.

Nekhlyudov identified organizations leading the way in the development of survivorship care guidelines. The Children's Oncology Group created consensus-based guidelines for survivors of childhood, adolescent, and young adult cancers, and she said these guidelines include a growing evidence base.⁵ The National Comprehensive Cancer Network (NCCN) has survivorship care guidelines reported by site of cancer and by topics, such as cancer prevention and screening and supportive care.⁶ The ACS developed survivorship care guidelines addressing breast, prostate, colorectal, and head and neck cancers⁷ and has worked to disseminate them to primary care clinicians who often see cancer survivors in community-based practices. ASCO's survivorship care guidelines focus on screening and management of late- and long-term effects of cancer therapy.⁸ Nekhlyudov noted that mobile apps may be used to disseminate cancer survivorship guidelines to clinicians.

Quality Assessment and Models of Care

Nekhlyudov said that assessing the quality of survivorship care remains a work in progress, with a need for further research and development. She pointed out that ASCO's Quality Oncology Practice Initiative (QOPI^®) has made advances in measuring quality of care, for example, but she noted that the metrics are mainly focused on cancer treatment and not on survivorship care.

Ganz said the essential components of survivorship care identified in the 2006 report—prevention, surveillance, intervention, and coordination—are lacking in many care settings, and that systems of care remain inadequate for cancer survivors in terms of the ability to intervene early to prevent the many sequelae of treatment, both medical and psychosocial. However, the stratification of survivors into low-, intermediate-, or high-risk categories has been helpful in the design of models of follow-up care, said Ganz.

Ganz also summarized the findings from the 2013 IOM consensus study report Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis (IOM, 2013b). She explained that the consensus committee concluded that cancer care is often not as patient-centered, accessible, coordinated, or evidence-based as it could be. A conceptual framework was developed that illustrates the importance of patient-centered care in the delivery of high-quality cancer care (see Figure 3).

FIGURE 3

A conceptual framework of the components of a high-quality cancer care delivery system. SOURCES: Ganz presentation, July 25, 2017; IOM, 2013b.

Ganz said the consensus committee's first goal stated, “The cancer care team should provide patients and their families with understandable information about cancer prognosis, treatment benefits and harms, palliative care, psychosocial support, and estimates of the total and out-of-pocket costs of cancer care” (IOM, 2013b, p. 8). To achieve this goal, the IOM committee recommended that:

• The federal government and other stakeholders should improve the development and dissemination of this information and decision aids.
• Professional educational programs for cancer care teams should train clinicians in communication.
• The cancer care team should communicate and personalize this information for their patients and collaborate with their patients to develop care plans.
• The Centers for Medicare & Medicaid Services (CMS) and other payers should design, implement, and evaluate innovative payment models.

Thirteen items were identified in the 2013 IOM report as critical information to be included in a cancer care plan:

1.

Patient information;

2.

Information on diagnosis;

3.

Prognosis;

4.

Treatment goals;

5.

Initial plan for treatment and duration;

6.

Expected response to treatment;

7.

Treatment benefits and harms;

8.

Information on quality of life and a patient's likely experience with treatment;

9.

Identifying who is responsible for care;

10.

Advance care plans;

11.

Costs of cancer treatment;

12.

A plan for addressing psychosocial health; and

13.

A survivorship plan.

In response to the committee's recommendation, Ganz said that CMS initiated the Oncology Care Model (OCM).⁹ Oncology practices receive $160 per Medicare beneficiary in additional payment to deliver a more comprehensive set of services in a more integrated way. These practices are obligated to create this 13-point structured plan. Private payers are also participating in OCM. Ganz described this CMS initiative as a significant step forward.

State Cancer Control Plans

A review of state comprehensive cancer control programs undertaken by the George Washington University (GW) Cancer Institute found mention of cancer survivorship across most of the cancer control plan objectives (Underwood et al., 2015), but to date there has been no systematic review of the outcomes reported, Nekhlyudov said. In her experience as a member of a committee in Massachusetts working to define quality metrics to integrate into the state plan, she said it was difficult to find outcomes that were clinically meaningful, measureable, and available.

In an effort to assist state planners, the GW Cancer Institute published a cancer plan resource guide and tool (GW Cancer Institute, 2015). Nekhlyudov said it will be instructive to see what works at the state level and whether successes can be replicated across the country.

Educational Opportunities for Health Care Providers

Nekhlyudov described some of the resources and activities available to health care providers to help them meet the complex needs of cancer survivors. In recognition of the important role that primary care clinicians play in caring for cancer survivors, the ACS and the GW Cancer Institute collaborated with the Centers for Disease Control and Prevention (CDC) on a free online cancer survivorship e-learning series for primary care clinicians.¹⁰ Unfortunately, the target audience for the series has not taken full advantage of this valuable resource, she said.

ASCO also has resources for survivorship care, including toolkits, available through an online survivorship compendium,¹¹ and has released a core curriculum for cancer survivorship education, a resource that can be taken to local communities for dissemination (Shapiro et al., 2016). ASCO University is developing a presentation slide set about survivorship issues for nationwide dissemination, according to Nekhlyudov. In addition, ASCO holds an annual cancer survivorship workshop that brings the oncology and primary care communities together.

Ganz said the 2013 IOM report recommended educational approaches that focus on all members of the oncology team, including nursing, social work, psychology, and rehabilitation (IOM, 2013b). She added that efforts in this area are in progress and there has been movement toward multi-professional education at many medical schools.

Employment Challenges

Nekhlyudov cited some of the many studies on the topic of employment-related issues for cancer survivors (Ekwueme et al., 2014; Guy et al., 2014; Nekhlyudov et al., 2016; Short et al., 2008; Yabroff et al., 2016; Zafar and Abernethy, 2013a,b). Many studies have addressed the implications of cancer for work, employment, and physical function, but she concluded that there is more work to be done in this area.

Access to Health Insurance

Ganz said the Patient Protection and Affordable Care Act (ACA)¹² was a positive development for cancer survivors because it expanded access to health insurance and it removed the lifetime caps on coverage. Without such protection, Ganz said, even patients with a generous insurance plan could easily meet a $1 million cap after a cancer diagnosis. Ganz said other ACA provisions removed an insurer's ability to exclude people on the basis of preexisting conditions, and extended the coverage on a family insurance plan for children up to age 26, which Ganz noted has been very important for adolescents and young adults (AYA) facing cancer.

Nekhlyudov added that the ACA also benefits cancer survivors by focusing on preventative care. She mentioned one study that attempted to assess the impact of the ACA on cancer survivorship; the investigators concluded that while there is some suggestion of benefit, there are currently few data available with which to fully evaluate the ACA's effect (Leopold et al., 2017).

Survivorship Research

Nekhlyudov reported on a marked increase in survivorship research published from 1984 to 2010 (Harrop et al., 2011). She said several federal agencies (CMS, the NCI, the Agency for Healthcare Research and Quality, and the Department of Veterans Affairs) have funded studies addressing survivorship care delivery. However, she emphasized that there is a lack of population-based research in this area. She added that much of the research has focused on quality of life, but other important domains of cancer survivorship are not yet well addressed. Nekhlyudov cited a review (Jacobsen et al., 2016) demonstrating that there has been a relative lack of research involving:

• Common cancers other than breast cancer;
• Older cancer survivors (greater than 65 years old);
• Long-term cancer survivors (more than 5 years);
• Interventional studies with younger cancer survivors (less than 21 years old);
• Biologic mechanisms and genetic factors related to recurrence and adverse effects; and
• Patterns and quality of survivorship care.

Nekhlyudov said that in light of the increasing number of long-term cancer survivors, additional investments in research are imperative.

Subsequent Cancers

Oeffinger said one out of every five new cancers diagnosed in the United States is a second, third, or fourth cancer for the patient (Travis et al., 2018). He said the factors contributing to a subsequent primary cancer include unhealthy behaviors (e.g., tobacco use, sedentary lifestyle, obesity), aging (patients 65 and older account for two-thirds of cancers), genetic factors, treatment exposures from the first cancer, and interactions among these factors.

Oeffinger said studies involving patients with the highest risk for lifestyle-related second primary cancers (individuals with head and neck cancer) indicated that:

• The risk for a death due to a second primary cancer at 13 years following diagnosis was similar to the risk of death from the original head and neck cancer (Baxi et al., 2014).
• The 10-year cumulative risk of having any type of second primary cancer among patients aged 55 to 64 years was nearly one in five, which is substantially higher than the risk in the general population (Moitry et al., 2017).
• The risk of second primary cancer of the head and neck and esophagus is high (Morris et al., 2011), and because of the tobacco exposures in this population, there is also an elevated risk of lung cancer. Oeffinger concluded that lung cancer screening should be considered for this very high-risk population.

Aging is also a risk factor for a second primary cancer, Oeffinger reported (Donin et al., 2016). He said a modeling study indicated that among women with a primary breast or colorectal cancer, the 10-year cumulative risk of a second primary cancer increases with age and is higher than that expected in the general population (Moitry et al., 2017). At ages 75 and older, approximately 10 percent of women with either primary breast or colorectal cancer would experience a second cancer. Among men with a primary prostate or colorectal cancer, the 10-year cumulative risk of a second primary cancer increases to about 16 percent after age 75, and men with a primary colorectal cancer face a 10-year cumulative risk of a second primary cancer of more than 20 percent at ages 65 and older, Oeffinger said (Moitry et al., 2017).

Other studies have shown the role of genetics in second primary cancers, said Oeffinger. For example, 50 percent of patients with Li-Fraumeni syndrome (i.e., those with a TP53 gene mutation) have a second primary cancer within 10 years following the diagnosis of a first cancer (Mai et al., 2016). In addition, he said people with mismatch repair gene mutations—a large subset of patients with hereditary non-polyposis colorectal cancer—have an elevated risk for a variety of different cancers (e.g., prostate cancer or endometrial cancer) (Win et al., 2012).

Oeffinger also described some studies of patients treated for Hodgkin's lymphoma. One study showed that among patients diagnosed between ages 15 to 50, the risk of second primary cancers did not change much over different eras of therapy (i.e., 1965–1976, 1977–1988, 1989–2000) (Schaapveld et al., 2015). He noted that these patients often have third, fourth, and subsequent primaries (van Eggermond et al., 2014). He also cited a case-controlled, population-based study of patients with Hodgkin's lymphoma that found the risk of subsequent lung cancer diagnosis was much higher among moderate to heavy smokers as compared to non- or light smokers (Travis et al., 2002). The difference was observed across treatment groups (i.e., exposure to alkylating agents or to radiation to the chest area), and the risk was exponentially higher among those receiving both treatment modalities, indicating an interaction between lifestyle behaviors and treatment exposures.

Cardiovascular Disease

Oeffinger explained that advances in radiation therapy (e.g., the use of smaller, more focused fields that spare normal surrounding tissues) can help to mitigate cardiovascular late effects. He said the decreased radiation exposure from newer techniques has led to a decline in the risk of second breast cancers and pulmonary problems in breast cancer patients, but that even with the use of more targeted fields, Hodgkin's lymphoma patients face cardiovascular risks because many have mediastinal lymph node involvement near the proximal coronary arteries. He said there is an ongoing international effort to define dose–response relationships to better quantify cardiovascular risks associated with radiation therapy.

According to Oeffinger, studies show a marked elevation in risk of coronary artery disease among both men and women treated with mediastinal radiotherapy. The risk for women aged 35, 45, and 50 is as high as for men of the same age, and there is a one in five chance of having symptomatic coronary artery disease by 20 years following moderate dose radiation to the mediastinal area, he said (Reinders et al., 1999). By 30 years, the chance of having a myocardial infarction (MI) is about 13 percent (Aleman et al., 2007). Among those experiencing an MI following mediastinal radiation, the risk of death is three times greater than for those having an MI without a history of radiation to the chest, he added (Swerdlow et al., 2007).

Oeffinger said a study by van Nimwegen et al. (2016) estimated that a woman treated for Hodgkin's lymphoma at age 20 with 21 grays¹³ to the mediastinum has a 5.5 percent cumulative risk of having coronary heart disease by age 40. Over the next 10 years, she has an absolute risk of about 10 to 12 percent of having a serious cardiac event (van Nimwegen et al., 2016). This risk is in sharp contrast to the 1 percent risk a woman without the history of Hodgkin's lymphoma and few other risk factors (e.g., is normotensive, not diabetic, and a non-smoker).¹⁴ He said that among men treated contemporarily for testicular cancer, the risk of cardiovascular deaths appears to be primarily during chemotherapy or soon thereafter (Fung et al., 2015). The older the patient was at the time of treatment, especially with multiple comorbidities, the higher the risk was of cardiac death.

Among the largest population of cancer survivors, women treated for breast cancer, Oeffinger said studies show that more than half of those ages 65 or older have hypertension or lipid disorders, and a sizable fraction have diabetes (Chen et al., 2012). Hypertension, either before, during, or after cancer therapy, is the single most important predictor of heart failure in breast cancer survivors treated with anthracyclines and trastuzumab, he noted (Chen et al., 2012; Jawa et al., 2016). Oeffinger emphasized that for women with breast cancer, continued monitoring of hypertension, diabetes, and lipid disorders is important for their longevity and quality of life, and that standardized approaches to managing these common comorbidities are needed.

Oeffinger added that for most cancer survivors, hypertension is now recognized as the single most important driver of long-term cardiovascular outcomes, both heart failure and coronary artery disease. He also noted that prevention and monitoring guidelines for cardiovascular dysfunction were recently developed (Armenian et al., 2016).

Accelerated Aging

Oeffinger said the acceleration of aging varies among cancer survivors and across body systems. He said a useful geriatric assessment tool, the deficit-accumulation frailty index, includes a variety of domains (e.g., comorbidities, psychosocial status, lab values) to measure degree of frailty. In a study that applied this index to a cohort of 500 cancer patients ages 65 and older, half of the patients were classified as non-frail, 197 (39 percent) were pre-frail, and 52 (11 percent) were frail (Cohen et al., 2016). He said subsequent studies of older breast cancer patients showed a higher risk of all-cause mortality and breast cancer mortality among those women classified as frail or pre-frail relative to the robust cohort (Mandelblatt et al., 2017). This same trend of higher risk of death among those categorized as frail has also been observed in adult survivors of childhood cancer, he noted (Ness et al., 2013).

Research on Interventions for Improved Physical Well-Being

Oeffinger discussed research on strategies for mitigating late- and long-term physical health risks in adult cancer survivors. Although some consensus-based screening guidelines exist for high-risk groups (e.g., patients with Li-Fraumeni syndrome and women with BRCA2 mutations), he said that survivors at higher risk for second primary cancers are generally not screened more aggressively than the average-risk general population, and new screening intervals might be necessary. Oeffinger added that more research on effective strategies for improving screening rates among high-risk survivors is needed, as is more evidence to support risk-stratified surveillance.

He emphasized that risk prediction models incorporating treatment exposures are needed for a range of outcomes so that absolute risks can be calculated and used to inform patients and plan survivorship care. He and other investigators are working on developing risk prediction models for patients who are treated with Hodgkin's and non-Hodgkin's lymphoma during their adult years. He also noted that there is scant research on variations in the risk of late effects among different racial and ethnic groups or by gender, although some evidence suggests that women are at a greater risk for many of the late effects compared to men. For example, women have a higher risk of second primary cancers than men who have had the same treatment exposures, he said (Turcotte et al., 2017).

Few studies exist to guide preventive strategies for posttreatment effects, Oeffinger said, but he noted the success of exercise training among the sedentary elderly in the general population in improving mobility and functioning and preventing frailty (Pahor et al., 2014). Whether such interventions would be successful among cancer survivors remains to be tested, he said.

He also identified some of the research challenges in generating evidence about posttreatment interventions. In his view, funders and grant reviewers tend to favor interventional studies over the observational studies that could help answer some of the survivorship care questions. There is also difficulty in determining the point at which an early intervention improves outcomes. For example, in the case of cardiovascular disease, Oeffinger said that interventions are ideally targeted to those who are asymptomatic, but who have evidence of risk (e.g., a low ejection fraction).

Oeffinger also described new technologies in development for cancer detection. He noted the promise of “liquid biopsies” that use circulating cell-free DNA or circulating tumor cells for prognosis and for monitoring that potentially could be used as tools to screen high-risk populations (Vockley and Niederhuber, 2015). He also referred to cancer interception—the ability to identify and treat a mutation before the cells have progressed to cancer (Albini et al., 2016; Li and Marchenko, 2017)—which he said could potentially augment or replace other currently used strategies (e.g., the use of Tamoxifen in chemoprevention). Oeffinger anticipated that these innovations will be further evaluated to assess their potential benefits and harms, and then disseminated over the next 5 to 10 years.

Posttreatment Fatigue

PRO measures, such as the Brief Fatigue Inventory (Mendoza et al., 1999), are commonly used to assess posttreatment fatigue, Jacobsen said. A semi-structured interview based on a case definition of cancer-related fatigue helps to identify more severe cases (Andrykowski et al., 2005; Donovan et al., 2013).

He said that risk factors for posttreatment fatigue include the presence of pretreatment fatigue (Goedendorp et al., 2013), greater body mass index (Andrykowski et al., 2010), and the type of cancer treatment. For example, among women with early-stage breast cancer, those exposed to chemotherapy versus radiotherapy as their initial cancer treatment are more likely to have persistent posttreatment fatigue (Donovan et al., 2004). Another risk factor for fatigue is the presence of polymorphisms in inflammation-related genes (i.e., IL-1B, IL-6, and tumor necrosis factor alpha or TNFα) (Bower, 2014), which can lead to persistent inflammation (Bower and Lamkin, 2013). According to Jacobsen, one of the best studied biological explanations for persistent fatigue is inappropriate activation of the cytokine network, either because of the disease or the treatment (Bower and Lamkin, 2013).

Jacobsen described a model that distinguishes the precipitating factors that give rise to symptoms from the perpetuating factors that sustain symptoms, including cognitive and behavioral responses. For example, fatigue may activate cognitive responses that can lead to feelings of hopelessness and helplessness in the face of continuing severe fatigue (Donovan et al., 2007). A behavioral response to fatigue is the natural inclination to be less physically active, which may exacerbate the problem.

Jacobsen reviewed the results of a recent meta-analysis of the effectiveness of various interventions for cancer-related fatigue. The analysis included 113 randomized clinical trials with a large number of studies focused primarily on women with early-stage breast cancer; 53 of the studies included patients who had completed treatment (Mustian et al., 2017). The research showed that exercise and psychological interventions (mostly cognitive behavioral therapy), or a combination of the two, were beneficial in the management of cancer-related fatigue. Patients who had completed primary treatment reported the greatest benefit (Mustian et al., 2017). Jacobsen said studies of pharmacologic interventions, primarily psychostimulants, have not been shown to be beneficial for posttreatment fatigue. However, they may be of some benefit in the treatment of fatigue in patients with advanced disease.

Based on the body of research, Jacobsen said the ASCO guidelines (Bower et al., 2014) and the Pan-Canadian guidelines¹⁵ recommend exercise, cognitive behavioral therapy, and psychoeducation for all patients who are at risk for persistent fatigue. The guidelines note that there is limited evidence for mindfulness-based approaches, yoga, and acupuncture, but there is no evidence to support the use of psychostimulant medications.

Jacobsen said future research about fatigue should address genetic risk factors and clarify the underlying biological mechanisms of fatigue to inform intervention development. In addition, he said research should identify the appropriate intensity of exercise needed to manage fatigue, as well as the effectiveness of interventions that may allow more patients to be treated (e.g., home-based walking exercise programs, telemedicine, and other Web-based strategies). New intervention strategies are also needed for patients who do not respond to exercise or cognitive behavioral therapy, Jacobsen said.

Posttreatment Sleep Problems

To assess posttreatment sleep problems, the Pittsburgh Sleep Quality Index is often used in cancer-related research, Jacobsen said (Buysse et al., 1989). Polysomnography, which involves home-based equipment to monitor motor functioning and cardiac and respiratory function, is the gold standard assessment tool, but because of its expense it is not widely used in cancer research. A less expensive monitoring technique is actigraphy, which uses accelerometers worn on the wrist to measure night-time motor activity and provide an objective measure of certain aspects of sleep quality (Ancoli-Israel et al., 2003).

Jacobsen said that risk factors for posttreatment sleep problems include the type of cancer treatment, arousability (individual differences in responsiveness to environmental stimuli, e.g., noise), and pretreatment sleep problems (Savard et al., 2001, 2009). He said that factors contributing to posttreatment sleep problems include cognitive responses (dysfunctional beliefs about sleep) and behavioral responses such as daytime napping, which is known to interfere with sleep at night (Savard et al., 2009).

Jacobsen said that cognitive behavioral therapy is the most widely studied intervention for insomnia in cancer survivors. This therapy addresses dysfunctional beliefs (e.g., “I cannot cope without a good night's sleep”), includes relaxation training, and helps people associate bed with sleep and not with other activities, such as watching television or eating. He said a meta-analysis of eight randomized controlled trials found cognitive behavioral therapy for insomnia to be effective (Johnson et al., 2016).

Jacobsen reported that the NCCN Survivorship Guidelines¹⁶ and Pan-Canadian Guidelines¹⁷ recommend the following interventions for insomnia in cancer survivors (Howell et al., 2013):

• Sleep hygiene measures (e.g., avoiding caffeine during the day and daytime napping);
• Cognitive behavioral therapy;
• Short-term intermittent use of hypnotic medication; and
• Psychoeducation for patients at risk for posttreatment sleep problems.

The guidelines state that although there is insufficient evidence to recommend exercise, there is enough evidence to suggest exercise as an intervention for sleep problems. Jacobsen suggested several areas for future research into sleep problems. One is to expand investigations into other sleep disorders, particularly sleep apnea. Risk factors for apnea include older age and being overweight, which are also risk factors for cancer. He said another focus of sleep research should be to clarify the underlying biological mechanisms by which chemotherapy and other cancer treatments might interfere with the structural organization of sleep (i.e., rapid eye movement [REM] and non-REM sleep). He also emphasized the need to adapt effective interventions for more widespread dissemination and implementation. For example, he said cognitive behavioral therapy is effective and could be disseminated further through Web-based approaches. Lastly, Jacobsen stated that the implications of a symptom cluster concept, such as the co-occurrence of fatigue and sleep problems, should be considered because they might have a common underlying mechanism, or the treatment of one symptom could have a cascade effect on the other.

Posttreatment Cognitive Problems

Compared with posttreatment fatigue and sleep disorders, much less is known about cognitive problems following cancer treatment, said Jacobsen. Patient reports and concerns that may suggest problems in executive functioning have prompted the research community to focus on this problem.¹⁸

Jacobsen discussed four modalities used to assess posttreatment cognitive problems:

1.

PRO measures, such as the Functional Assessment of Cancer Therapy-Cognition (Wagner et al., 2009);

2.

Neuropsychological tests, standard tests of major domains of cognitive functioning (e.g., learning and memory, processing speed, executive function) in which performance is evaluated relative to reference norms (Wefel et al., 2011);

3.

Functional imaging studies, such as magnetic resonance imaging and positron emission tomography (PET) (Wefel et al., 2015); and

4.

Qualitative electroencephalography often used in combination with other measures to more directly assess brain function (Hunter et al., 2014).

Jacobsen said PROs and neuropsychological tests are only modestly correlated in many studies, and that some researchers speculate that self-reported measures might be more sensitive.

He said that risk factors for posttreatment cognitive problems include older age (Ahles et al., 2010), cognitive reserve (i.e., premorbid intellectual ability) (Ahles et al., 2010), and genetic polymorphisms (e.g., in the apolipoprotein E gene) that have been implicated as a risk factor for dementia (Ahles et al., 2003) or in the catechol-O-methyltransferase (COMT) gene, which is known to regulate several neurotransmitters (Small et al., 2011).

The direct neurotoxic effect of treatment is one mechanism implicated in posttreatment cognitive problems, Jacobsen said (Bray et al., 2017; Janelsins et al., 2014; Joly et al., 2015). Animal models suggest that cancer drugs may cross the blood–brain barrier in very small amounts, leading to both gray and white matter volume loss, reduced white matter integrity, and altered neurochemistry and metabolism. Cytokine deregulation and treatment-induced hormonal changes have also been implicated, he said (Bray et al., 2017; Janelsins et al., 2014; Joly et al., 2015). For example, he said that lower testosterone levels in older men are a factor in age-related cognitive decline and that the use of androgen deprivation therapy for prostate cancer is associated with cognitive problems and with increased risk for dementia.

Jacobsen noted that the NCCN Survivorship Guidelines for evaluating cognitive problems do not recommend specific interventions. He said more research is needed and several promising interventions merit full-scale trials, but some of the interventions that could potentially be used to address cognitive functioning in cancer survivors include

• Cognitive training (Zeng et al., 2016);
• Memory and attention adaptation training that focuses on developing strategies to cope with loss (e.g., mnemonic devices) (Zeng et al., 2016);
• Cognitive rehabilitation (Zeng et al., 2016);
• Electroencephalography neurofeedback (Zeng et al., 2016);
• Exercise and integrative medicine techniques such as yoga, Tai Chi, and Qigong (Wefel et al., 2015; Zimmer et al., 2016);
• Psychostimulant medications, like methylphenidate (Wefel et al., 2015); and
• Acetylcholinesterase inhibitors (which have been used in the treatment of biocognitive impairment in early Alzheimer's) (Wefel et al., 2015).

Jacobsen suggested future research should seek to assess and integrate the different modalities used in the assessment of posttreatment cognitive problems, and to gain a better understanding of the genetic risk factors and mechanisms underlying structural and functional brain changes. Chemotherapy exposure has been the primary focus of the research, but studies on other therapies, including hormonal therapies and other oral agents, are also needed, Jacobsen said. In addition, he said studies are needed to explore the possibility of preventing cognitive changes by examining whether variations in therapeutic exposures or modifications of treatment regimens affect cognitive outcomes, or by focusing on the development and evaluation of neuro-protective agents. Ultimately, the goal of research in this area should be to have evidence-based treatment guidelines for the large population of survivors who are experiencing cognitive problems, Jacobsen said.

Translating Research into Practice to Improve Posttreatment Symptoms

Jacobsen stated that systematic efforts to translate research and guidelines into clinical practice are lacking. He emphasized the need for better dissemination of clinical practice recommendations for posttreatment symptoms to ensure appropriate: (1) screening (e.g., a universal brief screen to identify a clinically significant symptom); (2) assessment (including a focused history, symptom evaluation, and identification of reversible contributing factors); (3) management and treatment (including education, support, and self-management strategies and psychological, psychosocial, and pharmacologic interventions); and (4) follow-up care and ongoing reassessment.

According to Jacobsen, posttreatment symptoms are not systematically assessed and reported. PRO measures to identify the presence of symptoms are underused at the point of care, many providers are not aware of clinical practice guidelines for symptom management, and practice settings often do not have the resources to support symptom management. He said several randomized controlled trials have examined the utility of integrated symptom monitoring and management systems and found that such systems can improve symptom control and health care usage (Basch et al., 2016; Mooney et al., 2017). Success rests on the routine assessment of symptoms, providing that information to clinicians, outlining a treatment and follow-up plan, and offering guidance on a plan for patient self-management, he said.

Jacobsen described the recommendations for symptom management issued by the Blue Ribbon Panel convened by the National Cancer Advisory Board under the Cancer Moonshot initiative.¹⁹ The panel recommended a strategic research investment using implementation science to accelerate the adoption of integrated systems that gather and monitor patient-reported symptoms and provide decision support and care using evidence-based symptom management guidelines. Jacobsen concluded by showing a schema illustrating the phases of translational research and the gaps that need to be filled at each phase (see Figure 4).

FIGURE 4

The phases in translational research. SOURCE: Jacobsen presentation, July 24, 2017.

Jacobsen also discussed the need for triage and step-care models that use available resources efficiently to gain maximal benefit. In the triage model, survivors with mild to moderate symptoms could be given self-management strategies supported by informational materials and recommendations for online support. In a stepped-care approach, if people do not respond to those interventions, then more resource-intensive interventions can be marshaled, either via face-to-face encounters or telehealth approaches. Jacobsen suggested that regional centers could be developed to provide telehealth and online resources to patients in community-based care settings. Alternatively, centers that have the expertise could potentially contract with community-based practices to provide the specialized care. However, Jacobsen identified cross-state reimbursement policies as a barrier to these approaches.

Research on Weight Loss Interventions

Demark-Wahnefried said several research trials have assessed the benefit of weight loss interventions in cancer survivors (NASEM, 2018a). For example, while the Women's Intervention Nutrition Study was not explicitly focused on weight loss, the trial examined the effects of a low-fat diet on recurrence rates among 2,437 early-stage breast cancer survivors (Chlebowski et al., 2006). After 5 years, the women in the low-fat diet had a significantly reduced rate of recurrence, especially among women with ER-negative cancer. The women who were on the low-fat diet lost about 6 pounds over the course of the trial, which reinforces the notion that weight loss may improve outcomes for cancer survivors, Demark-Wahnefried reported. She said a summary of 14 research trials evaluating the effect of weight loss interventions on breast cancer survivors concluded that approximately 60 percent of enrollees had weight loss of at least 5 percent, even with relatively short-term interventions (2 to 18 months in duration) (Reeves et al., 2014). Those who lost weight had clinically significant benefits, such as lowered hemoglobin A1C, insulin, inflammatory markers, and lipids; lowered blood pressure; improvements in quality of life; and increases in physical functioning. Demark-Wahnefried said that 11 studies of weight loss intervention in breast cancer survivors are either in progress or have been published in the past 2 years, including some that aim to learn more about diverse populations (e.g., breast cancer survivors who are African American or Hispanic).

Improving Delivery of Lifestyle Interventions

Demark-Wahnefried noted three key elements of behavior change: self-monitoring (e.g., keeping dietary logs, weighing regularly); self-efficacy (e.g., improving confidence through incremental behavior change and modeling); and support (long term and by many). She added that behavioral change may be more attainable if addressed at multiple levels (e.g., the individual, interpersonal, organizational, community, and public policy). She also described the 5As model of behavioral change, an evidence-based approach for a range of different behaviors and health conditions (Glasgow and Nutting, 2004):

1.

Ask patients if they know about the relationship between behavior and cancer;

2.

Advise them on what they should do and provide educational materials;

3.

Assess if they are ready to make lifestyle changes;

4.

Assist them if they are ready, for example, by having them set a start date or identifying incremental changes; and

5.

Arrange support for that cancer survivor (e.g., referral, prescription).

If the individual is not ready to change, then continue to reinforce the message of the importance of a healthy lifestyle.

Demark-Wahnefried said more research is needed to optimize the delivery of various interventions; for example, identifying combinations that work, setting preferable timing for interventions, discovering the best delivery channels, and crafting the most effective messaging. Research is also needed to identify triaging approaches that recognize the diversity in readiness to change: Some people need a light touch to move them forward, while others need more intensive and long-lasting support, she said.

Demark-Wahnefried said Web-based wellness resources, such as the American Institute for Cancer Research website,²⁰ the LIVESTRONG website,²¹ and the SurvivorSHINE website²² are available, but in her view an infrastructure that better reflects the value of these interventions, including a reimbursement structure, is needed. She added that there is a need to train clinicians and allied health practitioners in lifestyle guidance for cancer survivors, pointing out, for example, that there are only approximately 750 dietitians who are certified specialists in oncology in the United States and Canada (Oncology Nutrition, 2018) and approximately 465 certified exercise trainers nationally. In a survey of physicians, nurse practitioners, and nurses about half said weight management is important for improving health, and about half said they would value training in weight management interventions (Anderson et al., 2013).

Eric Vinson, project coordinator at the Northwest Portland Area Indian Health Board, said there is also a need to improve the delivery of smoking cessation services among cancer survivors. He said that many cancer centers do not have tobacco cessation counselors on staff, noting that reimbursement is a barrier, and patients are being referred to tobacco quit lines that are ill-equipped to address the needs of cancer survivors. Jacobsen said the NCI had recently provided supplements to several major cancer centers to improve smoking cessation services, but he added that successful models need to be disseminated to community-based centers.

Improving Rehabilitation Services Delivery

Silver highlighted two recommendations that emerged from a National Institutes of Health (NIH) panel on cancer rehabilitation (Stout et al., 2016):

1.

Provide rehabilitation screening and assessment as part of a comprehensive cancer care plan, from the time of diagnosis throughout the course of illness and recovery, to address the functional needs of patients. These services should be provided by trained rehabilitation professionals who use evidence-based best practices to diagnose and treat the many physical, cognitive, and functional impairments associated with this medically complex population.

2.

In selected cancers, rehabilitation services should be offered pretreatment to optimize tolerance to surgical intervention and adjuvant treatment in order to minimize toxicity and improve outcomes.

Silver pointed out that cancer rehabilitation is generally reimbursable care, unlike some other survivorship services, but she said that better integration of cancer rehabilitation into the care continuum is needed, and that every cancer center should have a rehabilitation professional (e.g., a physiatrist or a physical therapist) in a leadership role to enable delivery of rehabilitation services as a part of usual cancer care.

In addition, Silver said that access to cancer rehabilitation services could be improved by providing more information to patients. She said more than 90 percent of the websites for NCI-designated cancer centers did not have an easily identifiable patient-focused description of, or link to, cancer rehabilitation services, and only 8 percent included accurate and detailed information about core rehabilitation services (physiatry and physical, occupational, and speech therapy) (Silver et al., 2017).

Silver also described prehabilitation, which is designed to increase a patient's functional capacity prior to cancer treatment, as a relatively new approach in cancer rehabilitation. She defined prehabilitation as:

a process on the cancer continuum of care that occurs between the time of diagnosis and the beginning of acute treatment and includes physical and psychological assessments that establish a baseline functional level, identify impairments, and provide targeted interventions that promote physical and psychological health to reduce the incidence and/or severity of future impairments. (Silver et al., 2013, p. 307)

For example, she said that with the advent of low-dose computed tomography (CT) screening for people at high risk for lung cancer, patients are diagnosed early and need to prepare for surgery. Prehabilitation can address risk factors such as smoking and diet and thereby lower the risk of thoracic surgery and improve functional outcomes. She said an expert panel recently proposed recommendations for future research on prehabilitation for patients with cancer (Carli et al., 2017).

Otis Brawley, chief medical officer at the ACS, raised the point that there is some commonality between palliative care and rehabilitation medicine, and that access to supportive care could be improved if these two disciplines worked together.

Adult Cancer Survivors

Barbara L. Andersen, distinguished professor of psychology in the Department of Psychology at The Ohio State University, addressed stress, depression, and anxiety (e.g., panic disorder or posttraumatic stress disorder) in adult cancer survivors. According to Andersen, these conditions are commonly comorbid with a cancer diagnosis and their presence significantly affects other emotions, behaviors, biology, and health outcomes. She explained that the prevalence of depression and anxiety among cancer patients is significantly greater than that seen in the general population (see Table 4).

TABLE 4

Depression and Anxiety Comorbidities in Cancer Patients.

Cancer patients who are most at risk of psychological and/or behavioral difficulties include (Andersen et al., 2014):

• Those with a prior history of anxiety or mood disorders;
• Men;
• The aged (risk rises at age 55 and older);
• Those who are alone, either actually or functionally (many people have partners, but that relationship may not be supportive);
• Individuals who are unemployed or are of low socioeconomic status;
• Patients receiving the most toxic therapies; and
• Individuals with progressive disease or recurrence.

Andersen noted that these risk factors are well documented, can be identified at the time of diagnosis, and thus provide opportunities for intervention. In discussing these various risk factors, Andersen indicated that 5- and 10-year survival is significantly greater for women and for those who are married (Goodwin et al., 1987; Ortmeyer, 1974). She also noted that use of taxanes for adjuvant therapy improves breast cancer outcomes (Anampa et al., 2015), but women exposed to these drugs often experience not only posttreatment neurotoxicity, pain, and peripheral neuropathy, but also significant depressive symptoms during and after treatment (Thornton et al., 2008). She said that a meta-analysis of 50 studies showed a significantly heightened risk (hazard ratio of 1.34) for premature mortality among patients with breast, lung, stomach, or colorectal cancer who were also diagnosed with depression (Chida et al., 2008). Andersen said some cancer patients have depression so severe that they consider suicide if untreated. Other studies have shown lower survival among those who describe themselves as having poor social functioning (Park et al., 2008) or psychosocial well-being (Kaasa et al., 1989).

Andersen said effective psychosocial interventions that reduce emotional distress and improve quality of life in high-risk patients typically include some sort of stress reduction strategy (e.g., relaxation training), information, behavioral and cognitive coping strategies (e.g., dealing with fatigue), social support, and focused interventions (e.g., sun protection for melanoma survivors) (Andersen, 1992). She summarized findings from six meta-analyses that found moderate to very large effect sizes, particularly for depression. Positive outcomes were found with psycho-education, cognitive behavioral therapy, relaxation, and mindfulness-based stress reduction (see Table 5). Andersen pointed out that these studies may underestimate the effect sizes associated with these interventions because study participants were not screened for anxiety and/or depression. In studies that limit enrollment to individuals with depression, outcomes include reductions in depression, related biologic changes (e.g., reduction in markers of inflammation), and changes in disease endpoints (e.g., reductions in cancer recurrence) (Andersen et al., 2008; Brothers et al., 2011).

TABLE 5

Efficacy of Psychological Interventions: Meta-Analyses.

Andersen said that over the past 40 years, psychosocial research has identified effective intervention strategies for cancer survivors, and she suggested ways to improve the delivery of psychosocial interventions for cancer survivors going forward. First, she said patients should be screened, noting that guidelines exist to support the screening and assessment of depression and distress in adult patients with cancer (Andersen et al., 2014). She said a stepped-care model can be used to screen individuals and stratify them by the degree of their symptoms, then target resources according to the degree of risk. Second, Andersen emphasized the need to disseminate and implement current evidence-based interventions (Neta et al., 2015), noting that only about 15 percent of patients receive care at a major cancer center. Training professionals on how to employ empirically based interventions in their practices is also needed, she said. Third, Andersen stressed the need to optimize existing interventions and expand outcomes beyond the psychological well-being (e.g., health care outcomes, costs). Finally, she said we need to embrace the “whole” cancer patient. Recognizing the diversity of patients is an imperative, she stressed; it may be necessary to test interventions targeted to certain subgroups of patients (e.g., racial/ethnic groups, those living in poverty, or individuals with substance use disorders). Vinson said that American and Alaskan Natives have the lowest survival rate of all races and he hoped that survivorship issues could be addressed within this population to reduce their cancer burden.

Childhood Cancer Survivors

Christopher Recklitis, director of research and support services for the Perini Family Survivors' Center at the Dana-Farber Cancer Institute and associate professor of pediatrics at Harvard Medical School, explained that a large proportion of pediatric cancer patients will be cured by their treatment, and because of their age, will live for a very long time with late effects. He summarized the research results on the psychological late effects on adult survivors of childhood cancers. The Childhood Cancer Survivor Study (CCSS)²⁵ is a multicenter study of cancer survivors of 5 years or more that includes self-reported psychological and quality of life outcomes for more than 7,000 adults, reports from parents on more than 2,900 adolescents (age under 18), and the involvement of more than 5,000 sibling controls for comparisons.

Findings from the CCSS raise concerns about the psychosocial health of adult survivors of childhood cancers, Recklitis said (Hudson et al., 2003; Recklitis et al., 2010; Stuber et al., 2010; Zeltzer et al., 2009). Adult survivors are twice as likely as sibling controls to report significant psychological symptoms, particularly anxiety and depression (Hudson et al., 2003). They are almost twice as likely to report suicide ideation (Recklitis et al., 2010) and impaired mental health (Zeltzer et al., 2009), and they are nearly four times more likely to be diagnosed with posttraumatic stress disorder symptoms compared with their siblings (Stuber et al., 2010). According to the CCSS parent questionnaire results, adolescent survivors were more likely to demonstrate signs of anxiety and depression (1.5 times the risk) compared with their siblings (Jacola et al., 2016; Schultz et al., 2007). Recklitis added that these findings are consistent across diagnostic groups and types of treatment, although there is a higher prevalence of major mental illness in survivors of childhood brain tumor (Ross et al., 2003).

In terms of social adaptation, Recklitis said studies indicate that compared with siblings, adult survivors of childhood cancers are:

• Approximately five times more likely to report functional impairment in health-related quality of life (Hudson et al., 2003);
• About three times more likely to report using special education services (Mitby et al., 2003);
• Less likely to attend college (Mitby et al., 2003);
• Six times more likely to report unemployment related to health (Kirchhoff et al., 2010); and
• More likely to be unmarried (Janson et al., 2009).

These findings of increased psychological distress, educational impairments, and social attainment limitations are also found in other large international cohort studies of adult survivors of childhood cancers, he added (Frobisher et al., 2007; Koch et al., 2004; Langeveld et al., 2003; Lorenzi et al., 2009; Michel et al., 2010; Stam et al., 2005).

Nonetheless, Recklitis said findings from the large cohort studies suggest that most survivors are adapting well (Brinkman et al., 2016; Gunst et al., 2016; Gurney et al., 2009; Janson et al., 2009; Kirchhoff et al., 2010; Mertens and Marchak, 2015; Willard et al., 2017; Zeltzer et al., 2009). For example, 60 to 75 percent of childhood cancer survivors are not reporting psychological problems, approximately 40 percent marry (Gurney et al., 2009; Janson et al., 2009), and approximately 80 percent find employment (Gurney et al., 2009; Kirchhoff et al., 2010). When asked, almost half reported that cancer had little impact on them in their adult life and many also reported positive consequences of their cancer experience (Gunst et al., 2016).

Recklitis pointed out that symptom scales used clinically and in research do not always tell the whole story. For example, in one study of young adult survivors, about 40 percent reported symptoms, but only 18 percent of these survivors received a psychiatric diagnosis (Recklitis et al., 2016). He said that 25 to 40 percent of childhood cancer survivors may have psychosocial needs and that symptoms are predominately mild to moderate in severity. He indicated that, relative to the general population, adult survivors of childhood cancer have similar rates of high distress and impairment, somewhat higher rates of moderate distress and impairment, and somewhat lower rates of low distress and impairment (Recklitis et al., 2016).

Recklitis discussed two significant risk factors for poor psychosocial outcomes among cancer survivors. The first is medical late effects, including pain (D'Agostino et al., 2016), disfigurement (Kinahan et al., 2012), chronic conditions (Vuotto et al., 2017), and impaired overall health (Vuotto et al., 2017). The second is therapy directed to the central nervous system (Schultz et al., 2007). Brain tumor survivors are particularly at risk for poor psychosocial outcomes, in part, because of neuropsychological and neuropsychiatric problems (King et al., 2017). Having certain symptoms can interfere with a young person's functional abilities, such as driving a car, having a relationship, and going to college, which in turn can have an impact on one's emotional health, Recklitis noted. When cancer onset predates attainment of adult capacities and roles, the impact is going to be much greater, he said. Vulnerable periods can occur around life transitions, such as a move to a new environment, a new relationship, or a career change (Coscarelli et al., 2011; Liptak et al., 2016).

Recklitis noted that there has been modest uptake of psychosocial services among survivors of childhood cancer and there may be ways to enhance participation. Recklitis described how he supports the front-line medical clinicians at the Dana-Farber Cancer Institute by suggesting screening measures and how to interpret them, by providing consultation in real time at the clinic, either to the clinicians or to the patients, and by providing urgent/emergent backup services when needed. He raised the question about where psychosocial services should be provided, saying that the cancer center or clinic may be well-suited for delivering some psychosocial intervention, but not others. On one hand, oncology clinicians understand the survivor's treatment and late effects, have the patient's trust, and can integrate other interventions with medical care, but on the other hand, oncology care settings may lack the necessary expertise and resources to meet the psychosocial needs of all survivors.

Recklitis discussed how survivors with low levels of distress can benefit from routine supportive and preventive care (Husson et al., 2011; Jacobson et al., 2009; Recklitis and Syrjala, 2017; Stanton, 2012)—with a focus on education, monitoring, providing self-help and supportive resources, and reassurance and anticipatory guidance—that could be provided in the context of survivorship care planning. He said the challenge is having sufficient programs and personnel to deliver care consistently across different groups and geographic areas.

At the other end of the spectrum, Recklitis described the needs of survivors with major mental illness who may need psychiatric care based outside the cancer center. Cancer-focused clinicians can help educate psychiatric and community-based clinicians about the effects of cancer treatment, and in some cases help with case management and serve as liaison between the mental health and oncology professionals, he said.

Recklitis described how those survivors in the middle range of distress are perhaps the most difficult and complex to manage, in large part because they have a range of symptoms and medical late effects. They could benefit from more intensive evaluation, symptom-related care, and targeted programs at the cancer center or clinic and in the community. Screening can occur through medical encounters, the use of health history forms, and self-report screening forms, but he said that commonly used standard screens may miss 20 to 40 percent of young survivors with a psychiatric diagnosis (Recklitis et al., 2016, 2017). For that reason, he cautioned against use of screening measures as the sole method of identifying survivors' distress.

For those survivors with moderate levels of distress, Recklitis described both low- and high-intensity interventions (Alfano and Rowland, 2006; Andersen et al., 2014; Recklitis and Syrjala, 2017; Stanton, 2012; Stanton et al., 2015). The interventions could range in focus to include

• Social activities, social support, and survivor activism;
• Mental health and coping with medical illness; and
• Biopsychosocial interventions (e.g., to address sleep disorders, fatigue, and sexual issues).

The primary care behavioral health model has relevance to survivorship care, according to Recklitis. This model focuses on early identification, quick resolution of identified problems, long-term problem prevention, and wellness promotion (Funderburk et al., 2013; Robinson and Reiter, 2007; VA Healthcare Network Upstate New York, 2005).

State of Knowledge About Caregiving

Barbara Given, university distinguished professor and interim associate dean for research and the Ph.D. program at the Michigan State University College of Nursing, said caregivers perform many tasks in support of a survivor's health and well-being, including (van Ryn et al., 2011):

• Making decisions and problem solving;
• Managing symptoms;
• Providing emotional support;
• Administering medications and managing complex medication regimens;
• Coordinating care;
• Performing complex tasks without prior preparation; and
• Ensuring follow-up care.

She summarized the state of knowledge about family caregiving based on her review of the research literature (Fox and Brenner, 2012). According to Given:

• Spouses provide most of the care and 50 to 65 percent of caregivers are employed and under age 65.
• The demands on caregivers have increased because of advances in treatment (there are more survivors and they are older) and because more care is provided on an outpatient basis and at home.
• Caregivers are not fully acknowledged as being members of the health care team or included in survivorship care plans.
• The role of caregivers and their needs go unrecognized in the care system.
• Caregivers often do not know how and when to access community resources.

Given described many gaps and limitations in the research on caregiving. Much of the research has focused on caregivers of breast and prostate cancer survivors. There have been few longitudinal studies of caregivers' needs; for example, stress and depression have been well researched, but not during the survivorship period, even though many caregivers assist patients beyond the initial cancer treatment. Given said research has documented the interdependence between the patient and caregiver—for example, one's depression or anxiety can affect the other—but there are few studies on caregivers' social relationships or occupational circumstances.

There is a lack of clarity regarding the knowledge and set of skills caregivers need to be successful, both in terms of managing treatments and coordinating care, said Given (Reed et al., 2017; Shaffer et al., 2016). Likewise, how roles and role relationships vary across the phases of care and over time is not well understood. Also lacking are studies of possible interventions during the survivorship phase that might affect the caregiver or the patient's outcomes, or relieve family caregivers' burden. Given said, “Family caregivers are the hidden cancer care team members. We need to recognize them, we need to value them, we need to include them in the provision of care.”

Effects of Caregiving

Given said the available research shows that more attention is needed on caregivers' health and psychosocial comorbidities. She cited research indicating that emotional distress such as anxiety and depression are high (approximately 38 percent) among caregivers at 2 years postdiagnosis and persist at 5 years (approximately 21 percent) (Kim et al., 2010). The rates of anxiety and depression were higher among caregivers of cancer patients than they were for caregivers of other types of patients (Lambert et al., 2017). She described research showing caregivers need help coping with uncertainty, managing their own health issues and emotions, and finding support and community resources. The effects on finances, lifestyle, and employment were also major challenges for caregivers 2 years after diagnosis (Lambert et al., 2017).

Meeting Caregiver's Needs

Given found few examples of caregiver training in her review of comprehensive cancer centers. She said studies indicate that caregivers do not have important information about follow-up care and treatment late effects, and about the availability of support. In addition, clinicians often are not aware of caregiver resources such as community-based aging services that provide transportation, respite, meals, and other types of supportive care to patients and their families (Adams et al., 2009; Hodgkinson et al., 2007; Lambert et al., 2017; Shaffer et al., 2016). Given explained the importance of having the clinician who is managing the patient's survivorship care assess the caregiver's circumstances and needs related to mental and physical health, life roles, decisional and family conflicts, transitions in care (e.g., need for rehabilitation), and follow-up care (e.g., for late effects, multiple complex comorbidities).

Interventions include referrals to community-based support groups, individualized therapy from psychosocial providers, or online and telephone-based support. Given said 79 percent of caregivers have access to the internet; of those, 88 percent looked online for health information (Fox and Brenner, 2012). Given mentioned instructional videos on the AARP website²⁶ for caregivers. For example, the videos explain how to prepare the home for safe mobility and how to move someone from a vehicle to a wheelchair. Given suggested that a toolbox of interventions and resources be developed for caregivers, noting that resources for caregivers of individuals with dementia could serve as models for the cancer community.

Guidelines, standards, and benchmarks could also be developed to aid clinicians and family caregivers and facilitate assessing the quality of care that caregivers provide. Underlying all of these efforts is professional education, said Given, noting that ASCO has developed resources for caregivers²⁷ and is working on curriculum development and continuing education.

Lifestyle Support for Caregivers

Given said studies have shown that individuals who had healthy lifestyles that include activities such as running and yoga often do not resume those activities once they become caregivers (Adams et al., 2015). Poor habits such as consuming fast food or comfort food and a lack of exercise persist in these studies when followed up at 2, 3, and 5 years. Rowland mentioned research involving caregivers of cancer patients from the Cancer Care Outcomes Research and Surveillance Consortium, which found concordance between caregiver stress and smoking.²⁸ Wald suggested that lifestyle interventions, such as a nutrition consult, be presented to both the patient and the caregiver. Wald added that early interventions, such as group sessions for caregivers, can mitigate distress before it becomes severe and debilitating.

Areas for Research and Policy

Given advocated for a large study of how caregiving affects a survivor's quality of care in terms of patient outcomes and safety, for example. Caregivers can play important roles in identifying complications and getting help promptly, thereby reducing patient morbidity and reducing costs of care, according to Given. Other areas of research she recommended include

• Caregiver surveillance at intervals of survivorship (e.g., 1, 3, and 5 years);
• High-risk situations and optimal interventions for them;
• Vulnerable caregiver populations (e.g., rural, racial, and ethnic groups);
• Quality measurement (e.g., quality and safety of patient/caregiver care, coordination of care, patient/caregiver outcomes);
• Family navigation (e.g., psychosocial coaches);
• Effects of interventions on patient/caregiver employment; and
• Caregiver health care utilization.

In the area of policy, Given said the Caregiver Advise, Record and Enable Act, which has been passed in 39 states,²⁹ says a caregiver must be identified for patients admitted to a hospital, and that the caregiver must receive instruction at discharge and into survivorship. Given said other policies that support caregivers include tax credits and Social Security credits, workplace accommodations, and payment for caregiving services.

Challenges to Implementing Psychosocial Interventions

Many workshop participants discussed the lack of progress in getting evidence-based psychosocial services into practice and offered views on various barriers to making beneficial psychosocial interventions a part of routine care. Rowland acknowledged that despite the screening tools for distress that are available, it remains a challenge to identify individuals at risk and intervene early to prevent catastrophic outcomes such as suicide. She added that there is a Healthy People 2020 goal to improve the physical and emotional well-being of survivors,³⁰ but little direction on how to meet this goal. Karen Basen-Engquist, professor of behavioral science and the director of the Center for Energy Balance in Cancer Prevention and Survivorship at The University of Texas MD Anderson Cancer Center, suggested that the integration of various screening instruments that identify risks for psychosocial distress and impairments, as well as lifestyle risks, might result in a more comprehensive screening approach that could affect the subsequent referral path. Andersen cited screening assessments within cardiology practices that incorporate comorbidity, obesity, and other risk factors. Rowland mentioned the NCCN survivorship care plan includes items on health behaviors and global function (Denlinger et al., 2017) and she said that there is a survey tool³¹ used for individuals entering clinical trials that assesses global quality of life, comorbidity, and health behaviors.

Recklitis underscored the need for more research on the effectiveness of screening, assessment, and treatment approaches, and said the general state of mental health care in the nation is inadequate, noting most people with a psychiatric disorder do not receive care. Andersen pointed to four problems: (1) shortages of professionals, and insufficient integration of psychosocial professionals within the medical care team; (2) the lack of funding for and poor dissemination of empirically supported psychosocial treatments throughout the various training programs; (3) a lack of experience with the screening and triage approach to survivorship care; and (4) reimbursement systems that do not support the provision of psychosocial services. Andersen added that the next generation of interventions needs to incorporate new technologies, for example, e-health, which have the capacity to target certain groups of clinicians and have a broader reach.

Vinson raised the issue of cultural competence in the context of risk assessment and triage. For example, an individual may have high needs, but they may not be identified because certain cultures are not as communicative about their needs as others. Graves cited the National Standards for Culturally and Linguistically Appropriate Services in Health and Healthcare,³² a resource that provides guidance in 15 areas where organizations can work to improve cultural and linguistic competency. Wald added that workshops on cultural competency at national conferences and elsewhere would help oncology clinicians address the needs of the diverse community of cancer survivors. In Wald's view, medical and nursing schools should teach psychosocial approaches as a standard of care for patients, families, and caregivers, and the curriculum should include mandatory communication skills training and assessment to boost competency in effectively delivering psychosocial care to patients and their caregivers.

Ganz raised issues related to payment mechanisms and quality of care. She observed that some survivors are receiving unnecessary blood tests and scans during their follow-up care while necessary psychosocial services are not provided or paid for. Brenda Nevidjon, chief executive officer of the Oncology Nursing Society (ONS), discussed problems in the delivery system environment, specifically clinician burnout and compassion fatigue due to insufficient staffing, that impede progress in delivering comprehensive and compassionate care to survivors and their caregivers.

Employment and Insurance

Cathy J. Bradley, associate director of cancer prevention and control at the University of Colorado Cancer Center, reviewed the research on cancer and employment and discussed its implications. Among the approximately 15.5 million survivors in the United States (ACS, 2017), about 7 million are of working age, Bradley reported (Howlader et al., 2014). Employment experiences reflect trends in cancer survivor characteristics and modern cancer treatment practices; for example, a high percentage of women survivors (58 percent), a shift toward a younger age of diagnosis, greater use of outpatient care, a wide range in treatment duration, and increasing use of oral agents, often on a continuing basis.

Bradley observed that these treatment trends coincide with dramatic changes in the American workforce: Individuals are remaining in the workforce longer, the number of women in the workforce is increasing, and the way in which work is being performed is changing. For example, for high-skilled workers, there has been an increase in the so-called “gig economy,” which is characterized by people working at home, working for multiple employers, and having more flexibility, but virtually no benefits. These freelance workers are not covered by some of the laws that offer some protection to those facing illness and disability, such as the Family and Medical Leave Act (FMLA)³³ or the Americans with Disabilities Act (ADA).³⁴ But in general, she said the skilled workforce can compete for work and negotiate for better work environments and benefits. Bradley noted that the two top demands of employees following pay and salary are health care coverage and work flexibility.

At the other end of the spectrum, Bradley described the circumstances facing low-skilled laborers. Overall, there is a loss of middle-skilled jobs (e.g., cashier) contributing to more men moving into low-skilled jobs and more women shifting to high-skilled jobs. Cost-cutting measures used by employers include eliminating health care coverage and other benefits and cutting back work hours, leading people to work multiple jobs or to withdraw from the labor force.

These changes in the workforce affect cancer survivors as they try to maintain their employment status. Bradley observed that survivors are very motivated to keep working to retain their health insurance and to combat financial toxicity, as well as to maintain a sense of normalcy, self-worth, and accomplishment that can come from work. Bradley added, “When somebody says, ‘How is he doing?' and the answer is ‘He is back to work,' that immediately sends a positive signal of recovery.”

Even though return to work is a key element of quality of life, it has not been included as an outcome measure in any clinical trials or drug studies, Bradley said. Employment-related outcomes that have been studied include:

• Labor supply (employment and hours worked) for both the patient and the spouse;
• Wages;
• Benefit retention and “hours” lock;
• Job mobility (whether or not the employee is able to move jobs following a diagnosis and treatment); and
• Work limitations.

Bradley said research studies indicate that many factors affect employment-related outcomes and return to work. These factors are related to treatment characteristics, the work environment, and patient characteristics (Bradley et al., 2007b) (see Table 6).

TABLE 6

Risks Affecting Return to Work.

For example, patients with higher levels of education generally experience better employment-related outcomes, Bradley said (Bradley et al., 2005). Regarding treatment factors, in one study, about half of women with breast cancer reported that cancer treatment interfered with their physical efforts at work (Bradley et al., 2007b). These women also reported difficulty with concentration (31 percent), the ability to do analysis (28 percent), keeping the pace set by others (39 percent), and learning new things (20 percent) (Bradley et al., 2007b). She said studies have shown that the longer the treatment goes on, the harder it is for the patient to cope with treatment and the accumulation of side effects (Barnes et al., 2014). For example, among breast cancer survivors who had lengthy periods of treatment, women who were highly educated and in cognitively demanding jobs tended to suffer the most depression and anxiety, largely because they were highly invested in intensive jobs, but were unable to perform them.

Studies have also shown that many work environment factors affect employment-related outcomes (Barnes et al., 2014). For example, survivors who start off with low job satisfaction have even lower job satisfaction over time. This tendency is correlated with poor outcomes, such as very low ratings of quality of life and high rates of depression and anxiety.

Employers play a major role in enabling cancer patients to return to work. In a study conducted by Bradley and colleagues, nearly 90 percent of breast cancer patients and 85 percent of prostate cancer patients reported that their employer was accommodating to their need for treatment and time away from work (Bouknight et al., 2006; Bradley et al., 2007b). Low-income, multiethnic women treated for breast cancer were less likely to report having an accommodating employer (Blinder et al., 2017). Bradley also noted studies showing that the longer the treatment goes on, the greater the tendency for employers to become less understanding and for workplace conflicts to arise.

Jacobsen noted the importance of return to work as a clinical and psychosocial outcome for those who are working before treatment, pointing out that a more expeditious return to work among those who want to go back to work could be an indicator of the quality of care. Bradley described the challenge of trying to capture this information from EHRs, using a change in insurance as an imperfect indicator of return to work. Shelley Fuld Nasso, chief executive officer of NCCS, suggested that a better marker of quality of care would be return to functional status and quality of life. She cautioned that return to work may be a marker, but it is not sufficient, noting that an individual could be back at work and be miserable if still dealing with side effects. Bradley added that measures of how individuals are doing medically and psychosocially upon return to work would be helpful. In her research, she found that about two-thirds of the women discussed their employment situation with their physician, but usually only when they started to experience difficulties.

Kim Hall Jackson, cancer survivor and advocate, shared her experience of workplace conflict that arose following her diagnosis of colorectal cancer at age 45 in 2008 (see Box 8).

BOX 8

A Patient's Voice: Challenges at Work During and After Treatment.

Bradley observed that there is little research on spouse employment, but some studies have shown that employed spouses of breast cancer survivors do not change their labor force participation and tend to continue working, largely because women rely on various other types of caregivers, whereas men who are ill and married tend to rely on their wives to be the caregiver (Bradley and Dahman, 2013). There was some decrease in hours worked during the active treatment period, but men who provided insurance for their wives through a family policy were less likely to decrease their hours in order to maintain their health insurance.

Bradley has found that type of health insurance greatly affects employment (Bradley et al., 2007a,b). Individuals who have a family policy are more likely to work, and cancer patients and survivors who carry the insurance themselves are more likely to work as well. Some study participants reported that they would miss a chemotherapy appointment before they would jeopardize their work because of concerns about maintaining health insurance. These concerns were particularly acute for those with dependents (children or a spouse) on their policy. She noted that the consequences of this dependency on employer-based health insurance may include health sacrifices for those who continue working and the loss of coverage for those who cannot continue working.

Research on cancer survivorship and employment has clinical, employment, and policy implications, Bradley said. At the clinical level, she suggested that employment outcomes should be integrated into clinical studies to answer questions about the impact of different kinds of treatment on one's ability to work. Improving the control of symptoms that affect work is also important; a survivor's ability to work can be enhanced when sleep aids, antidepressants, physical therapy, and cognitive reconditioning are available, she emphasized. Clinicians need be mindful, however, of how symptom control interventions affect patients' ability to work; for example, drugs for insomnia may make the patient sleepy during the work day.

Bradley said more workplace interventions are also needed, noting that employers and employees do not fully understand the long-term effects of cancer and how cancer and its treatment can diminish the ability to work long after treatment ends. In her view, employers need to be educated so they can do a better job of providing the kinds of accommodations that survivors need. The accommodation needs that Bradley heard from breast cancer survivors most often were: flexible schedules; reduced hours, especially during active treatment; and special equipment (e.g., a laptop that could facilitate working at home).

Examining the extent to which the employer is “health centered” or offers a “well-being” environment is a new area of research, said Bradley. She described a CDC-funded initiative known as Total Worker Health³⁵ to examine employers' knowledge and understanding of worker well-being, identify mechanisms promoting a health-centered workplace, and evaluate whether a business case can be made for the adoption of this approach.

At the policy level, Bradley said the research on survivorship and health insurance suggests a need to broaden the options for insurance outside the workplace. In addition, paid sick leave is important, especially during the active treatment phase. Bradley mentioned that FMLA does not apply to small employers (with less than 50 employees), and most of today's workforce is employed by small employers or are working independently as freelancers and contractors. Bradley concluded that solutions are needed across the employment spectrum to improve the experience of cancer patients and survivors.

Financial Hardship

Robin Yabroff, social science analyst in the Office of Health Policy at the Office of the Assistant Secretary for Planning and Evaluation in the Department of Health and Human Services,³⁶ described key research findings regarding financial hardship among cancer survivors. For context, Yabroff explained that there have been dramatic increases in the price of cancer drugs (Bach, 2009; IOM, 2014; NASEM, 2018b). Some immunotherapies and targeted agents now cost $25,000 or more per month, she said, and even with insurance, cost-sharing provisions can mean significant out-of-pocket expenses for patients treated with these drugs, which may not offer a cure or even significant improvement in survival. Additional costs might include supportive agents, advanced imaging tests, and hospitalizations.

According to the research, Yabroff said that financial hardship is relatively common among cancer survivors, even many years after treatment. Risk factors for financial hardship include

• Younger age (Banegas et al., 2016; Kent et al., 2013; Shankaran et al., 2012; Yabroff et al., 2016);
• Being female (Yabroff et al., 2016);
• Minority race or ethnicity (Jagsi et al., 2014; Kent et al., 2013; Yabroff et al., 2016);
• A recent cancer diagnosis or treatment (Kent et al., 2013; Yabroff et al., 2016);
• Having lower socioeconomic status (Banegas et al., 2016; Shankaran et al., 2012; Yabroff et al., 2016); and
• Being unemployed or changing employment because of cancer (Yabroff et al., 2016).

Compared to individuals without a cancer history, cancer survivors have greater health care expenditures and more financial difficulties because they are unable to work, or have work limitations (Finkelstein et al., 2009; Guy et al., 2013; Short et al., 2011; Yabroff et al., 2008). Research also shows higher bankruptcy rates among cancer patients compared to people without a cancer diagnosis, controlling for age, residence, and socioeconomic status (2.65 times higher from 1995 to 2009) (Ramsey et al., 2013). She added that among cancer survivors, bankruptcy has been associated with increased mortality risk, perhaps due to lower quality of life and overall well-being among those who experience bankruptcy, and/or to an inability to adhere to a treatment plan because of the financial hardship (Ramsey et al., 2016).

Yabroff discussed findings from studies of financial hardship that conceptualize hardship in terms of material hardship, psychological hardship, and behavioral hardship (Altice et al., 2017; Tucker-Seeley and Yabroff, 2016; Yabroff et al., 2016). Material financial hardship relates to having trouble paying medical bills or having medical debt. Psychological financial hardship relates to the distress or worry that may accompany having medical bills. Behavioral financial hardship occurs when care is delayed or foregone because of cost (e.g., skipping medication doses to save money).

Estimates from the nationally representative 2011 Medical Expenditure Panel Survey (MEPS) on Experiences with Cancer, Yabroff explained, suggest a high level of financial hardship among cancer survivors (Yabroff et al., 2016) (see Table 7). Approximately 20 percent of survivors reported they had experienced any aspect of material financial hardship and approximately 23 percent were worried about paying for their medical care. Most respondents with a cancer history were long-term cancer survivors, reporting they had been diagnosed more than 5 years ago, and Yabroff said this suggests that the financial hardships reported are long lasting. In a study of cancer survivors in health plans, individuals with lung or breast cancer had greater material financial hardship compared to those with colorectal cancer, prostate cancer, or melanoma (Nekhlyudov et al., 2016).

TABLE 7

Financial Hardships Associated with Cancer.

Yabroff described other findings based on data from the MEPS on Experiences with Cancer (Yabroff et al., 2016):

• Among those 18 to 64 years, cancer survivors with private health insurance report significantly less material financial hardship than those who are uninsured or have public insurance (approximately 25 percent versus 35 to 40 percent). About 13 percent of survivors ages 65 years and over said they were having trouble paying their medical bills.
• Psychological financial hardship was highest among adults ages 18 to 64 who were uninsured (about 50 percent). Rates for those in this age group with any insurance (public or private) were about 30 percent. For the population ages 65 and over, about 13 percent experienced psychological financial hardship.
• There are greater reports of either material or psychological financial hardship among working age adults age 18 to 64 years (about 40 percent) compared to those age 65 years and older (about 20 percent) (see Figure 5).

FIGURE 5

Material and psychological financial hardships associated with cancer. NOTES: Data are national estimates from the 2011 Medical Expenditure Panel Survey Experiences with Cancer Survey. SOURCES: Yabroff presentation, July 24, 2017; reprinted with permission. (more...)

According to Yabroff, findings from a LIVESTRONG Foundation study of 4,719 working-age adults with a previous diagnosis of cancer indicate high levels of material hardship, with approximately one-third of survivors saying they had borrowed money or gone into debt (Banegas et al., 2016). Among that group, the out-of-pocket spending was primarily for medical expenses, transportation, lodging, child care, and home/respite care. Approximately 64 percent of respondents reported psychological financial hardship associated with cancer (e.g., worrying about paying medical bills) (Banegas et al., 2016).

Yabroff said findings from the National Health Interview Survey³⁷ show that adults ages 18 to 64 with a history of cancer are much more likely than those without a cancer history to say that they delayed filling a prescription, took less medication, and skipped medication doses because of cost (Zheng et al., 2017). These analyses adjusted for age, sex, race/ethnicity, socioeconomic status, type of health insurance, residence, and number of comorbid conditions.

Yabroff concluded that it is important to distinguish the material, psychological, and behavioral aspects of financial hardship in order to intervene more effectively to relieve some of the consequences of this hardship. For example, if someone is having difficulty paying bills, distress counseling may not be helpful in alleviating that person's burden, and a very different intervention may be needed. She said for individuals facing financial hardship, resources may be available, such as financial navigators and special programs. For example, the Cancer Care Equity Program at the Dana-Farber Cancer Institute aims to reduce cancer disparities.³⁸

Financial hardship research continues to evolve, Yabroff said, with ongoing measure development, primary data collection, and use of the MEPS Experiences with Cancer Survey (the 2016–2017 MEPS Experiences with Cancer Survey was in the field at the time of the workshop). Other national surveys are also relevant. For example, the Behavioral Risk Factor Surveillance System Survey has questions about financial hardship such as household instability and food insecurity. Another resource Yabroff mentioned was the NCI Physician Data Query, which includes a summary of evidence on financial toxicity that is continually updated.³⁹

Patient Perspectives on Costs of Care and Financial Toxicity

Using her experience as a cancer survivor and advocate for 20 years, Mary Jackson Scroggins, co-founder of Pinkie Hugs, LLC, and In My Sister's Care, discussed issues of financial toxicity from the patient perspective. According to Scroggins, financial toxicity is inadequately defined, explained, and studied. She said when asked about finances, patients can feel stigmatized and embarrassed and therefore, try to make their answers acceptable to the person who is asking the questions. Others may fear they will receive inferior care if their financial vulnerability is disclosed or have concerns about how their financial information will be used.

Scroggins said health care professionals may find it uncomfortable to ask questions about a patient's financial circumstances, but it is important for them to facilitate an open and honest conversation with patients. She added that patients need to feel comfortable telling their clinicians that the reason that they are not taking their medication or adhering to some aspect of their care regimen is because they are having financial difficulties. Only then can assistance be offered, she said.

Scroggins said tools are needed to help health care professionals who are reluctant and unprepared to discuss financial matters. Researchers and clinicians should anticipate patients' concerns and provide clear information about disclosure and privacy policies, explain how their information will be used, avoid verbal language and body language that suggests to the patients that they are being judged, and provide private areas to have conversations, said Scroggins. In research studies, Scroggins noted the importance of participation by individuals of all income and demographic groups so that results can be generalized. Scroggins emphasized opportunities in the health care system for:

• Standardizing and conducting more research on financial toxicity;
• Assessing patient needs and educating and learning from patients and the community;
• Engaging the patient/survivor and advocacy communities to develop and validate research tools/questions and interpretations;
• Eliminating perceived stigma around financial disclosures; and
• Enhancing patient care and outcomes.

Scroggins stressed the need for additional evidence surrounding the impact of finances on patient care in order to advance the development of effective interventions.

“e-Patient Dave” deBronkart, co-founder and chair emeritus of the Society for Participatory Medicine and patient advocate, described the voice of patients as “ground truth” and referenced the IOM consensus study report Best Care at Lower Cost (IOM, 2013a), which identified engaged, empowered patients as an essential characteristic of a continuously learning health care system. He stressed the need for patients to use the Internet to learn about their health, treatment options, and cost of care. deBronkart described these “e-patients” as being “empowered, engaged, equipped, and enabled.” deBronkart pointed out that more information and incentives to use the information are needed. In his personal story of financial toxicity, deBronkart described having to make treatment decisions for his skin cancer and the challenge of obtaining information about the cost of care (see Box 9).

BOX 9

A Patient's Voice: The Cost of Care.

Legal Issues Related to Employment

The ADA prohibited some types of employment discrimination and created a legal right for people with disabilities to receive workplace accommodations. But Hoffman said that courts often did not consider cancer survivors as members of one of the protected classes of the ADA: (1) a person with a disability; (2) a person with a history of a disability; or (3) a person who was regarded as having a disability (Hoffman, 2000).

Hoffman explained that in 2008, the ADA was amended to cover individuals with a cancer history. According to Hoffman, the law shifted from “having to prove you are covered” to “how is the law going to protect you?” After the 2008 amendment, there was an increase in the number of cancer survivors who had favorable outcomes for discrimination claims filed with the federal U.S. Equal Employment Opportunity Commission (EEOC), Hoffman said. Most of the cases were resolved with a focus on appropriate accommodations for the cancer survivor, and overall, employers were less likely to discriminate, Hoffman said (Hoffman, 2014).

Hoffman indicated that the ADA has provided a means for cancer survivors to demand reasonable accommodations and to insist on being treated by employers according to their ability to work, not on the basis of having a disability or cancer. Under the ADA, “If you are able to work, you are entitled to a reasonable accommodation that enables you to do your job,” Hoffman said. She added that the most common accommodation that survivors use is time off for treatment or follow-up care. Flexible work hours are another common accommodation, for example, to include rest into the workday.

Hoffman said the growth of patient advocacy in the past 10 to 15 years has advanced legal protections and more legal resources are available, such as patient navigators, social workers, and others familiar with legal issues in clinical settings. The ADA currently covers all employers who have at least 15 workers, but Hoffman said the law would need to be amended to ensure coverage of those in the new economy (e.g., independent workers).

Hoffman also described the FMLA as another law relevant to cancer survivors. The law requires up to 12 weeks of unpaid leave to care for yourself or, if you are a caregiver, to care for a spouse or a child who has a serious medical condition. She said most cancer diagnoses meet the definition of a serious medical condition, but this law only applies to employers who have at least 50 employees. Hoffman said another shortcoming of the law is that it does not require paid leave, noting that the United States is one of the few countries in the Western world that does not have paid family leave. There have been attempts in Congress to amend the law to include this provision, but they have failed. Hoffman added that some state laws have provisions for paid leave and some employers provide such leave as part of their benefit package.

Hoffman explained that the Genetic Information Nondiscrimination Act of 2008 prohibits some forms of discrimination based on the results of a genetic test or on the basis of having a family member with a genetic-based disease or condition, but the law does not prohibit discrimination against an employee who has a genetic-based disease.⁴⁰ Hoffman said that one aim of the law is to encourage people to get genetic testing so they can be proactive with their health care.

Hoffman noted that a range of protections is provided by state law as well. Every state has a law similar to the ADA that prohibits some kinds of workplace discrimination and requires some types of reasonable accommodation. Hoffman added that progressive states like California and New Jersey have laws with more extensive protections than the federal ADA, while other states, particularly those in the south, have laws with more limited protections.

There is also variation, Hoffman said, in the extent to which state laws provide medical leave, with some mandating more medical leave than required under the FMLA. In the area of privacy, again, Hoffman mentioned the variation in protections afforded by state laws, with some states offering more protections than those under the Genetic Information Nondiscrimination Act of 2008. In summary, Hoffman observed that there is a “layering of federal and state legal rights for cancer survivors.”

Legal Issues Related to Education

Hoffman described the many ways that a history of cancer can affect educational attainment and the quality of education. She said the effect of cancer on education is especially salient for survivors of childhood cancer because the late effects of radiation, chemotherapy, and surgery can lead to neurocognitive deficits, growth retardation, cardiac dysfunction, and subsequent malignancies. In addition, there can be serious psychosocial late effects and symptoms, such as fatigue, that can impair learning and academic achievement. Hoffman noted that these late effects could make it very difficult to be a full-time student.

Hoffman described the protections offered by the Individuals with Disabilities Education Act (IDEA). This law applies to children and young adults from ages 3 to 21 and requires schools to have an individual education plan tailored to the needs of children with disabilities, including cancer survivors. These plans are developed by multidisciplinary teams, and in the case of pediatric cancer, the teams should include a professional with knowledge of the late effects of cancer and its treatment. When individuals age out of the protections offered by the IDEA, and enter college or graduate school, the ADA provides protections. Hoffman added that both the IDEA and the ADA require individually tailored accommodations to help the survivor go to and stay in school. These accommodations could be as simple as making provisions for breaks while at school or allowing for extra time when taking an exam. The accommodations can also be more resource intensive, for example, providing an aide to accompany the student to school to take notes, open doors, and record lesson plans.

Hoffman described some concerns regarding the future legal rights of cancer survivors. There is a potential, she said, for Congress to amend laws to weaken existing protections and for federal agencies, such as the EEOC, the Department of Labor, and the Department of Education, to reduce their enforcement efforts. Hoffman added that reductions in support of legal services could hamper the ability of cancer survivors in financial distress to get assistance. She encouraged workshop participants to pursue opportunities in their communities; for example, a cancer center might be interested in starting a medical–legal partnership.

In Hoffman's view, the marked increase in advocacy, informed by advances in survivorship research, has led to a growth in awareness of the needs of cancer survivors among employers, educators, the health care community, and the general public. She added that with this awareness will come recognition of the need to maintain and improve employment and educational legal protections for cancer survivors. Hoffman said multidisciplinary strategies, such as the formation of medical–legal partnerships within patient-centered medical homes, also help support survivors' legal rights and can potentially prevent problems in the workplace or school. Lastly, Hoffman discussed the need for multidisciplinary training that includes oncology and legal professionals, which in her view would promote more holistic care of survivors to address their physical, mental, financial, and legal health.