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Today, it is not possible to deliver high-quality cancer care without using existing approaches, tools, and resources to address patients' psychosocial health needs. All patients with cancer and their families should expect and receive cancer care that ensures the provision of appropriate psychosocial health services.
Cancer Care for the Whole Patient recommends actions that oncology providers, health policy makers, educators, health insurers, health planners, researchers and research sponsors, and consumer advocates should undertake to ensure that this standard is met.
Meeting Psychosocial Health Needs
Copyright © 2008 National Academy of Sciences
All right reserved.
Cancer care today often pro ides state-of-the-science biomedical treatment, but fails to address the psychological and social (psychosocial) problems associated with the illness. This failure can compromise the effectiveness of health care and thereby adversely affect the health of cancer patients. Psychological and social problems created or exacerbated by cancer-including depression and other emotional problems; lack of information or skills needed to manage the illness; lack of transportation or other resources; and disruptions in work, school, and family life-cause additional suffering, weaken adherence to prescribed treatments, and threaten patients' return to health. A range of services is available to help patients and their families manage the psychosocial aspects of cancer. Indeed, these services collectively have been described as constituting a "wealth of cancer-related community support services." Today, it is not possible to deliver good-quality cancer care without using existing approaches, tools, and resources to address patients' psychosocial health needs. All patients withcancer and their families should expect and receive cancer care that ensures the provision of appropriate psychosocial health services. This report recommends ten actions that oncology providers, health policy makers, educators, health insurers, health plans, quality oversight organizations, researchers and research sponsors, and consumer advocates should undertake to ensure that this standard is met.
PSYCHOSOCIAL PROBLEMS AND HEALTH
The burden of illnesses and disabilities in the United States and the world is closely related to social, psychological, and behavioral aspects of the way of life of the population. (IOM, 1982:49-50) Health and disease are determined by dynamic interactions among biological, psychological, behavioral, and social factors. (IOM, 2001:16) Because health ... is a function of psychological and social variables, many events or interventions traditionally considered irrelevant actually are quite important for the health status of individuals and populations. (IOM, 2001:27)
In previous reports the Institute of Medicine (IOM) has issued strong findings about the important role of psychological/behavioral and social factors in health and recommended more attention to these factors in the design and delivery of health care (IOM, 1982, 2001, 2006). In 2005, the IOM was asked once again to examine the contributions of these psychosocial factors to health and how best to address them-in this case in the context of cancer, which encompasses some of the nation's most serious and burdensome illnesses.
cancer survivors' health and many adjustments in their daily living. Eleven percent of adults with cancer or a history of cancer (almost half of whom are age 65 or older) report having one or more limitations in their ability to perform activities of daily living such as bathing, eating, or using the bathroom, and 58 percent report other functional disabilities, such as the inability to walk a quarter of a mile, or to stand or sit for 2 hours (Hewitt et al., 2003). Long-term survivors of childhood cancer are at particularly elevated risk compared with others their age. Nearly 20 percent of those who survive 5 years or more report limitations in activities such as carrying groceries, climbing a flight of stairs, or walking a block (Ness et al., 2005). Significant numbers of individuals stop working or experience a change in employment after being diagnosed or treated for cancer (IOM and NRC, 2006).
Not surprisingly, significant mental health problems, such as depression and anxiety disorders, are common in patients with cancer (Spiegel and Giese-Davis, 2003; Carlsen et al., 2005; Hegel et al., 2006). Studies have also documented the presence of symptoms meeting the criteria for post-traumatic stress disorder (PTSD) and post-traumatic stress symptoms (PTSS) in adults and children with cancer, as well as in the parents of children diagnosed with cancer (Kangas et al., 2002; Bruce, 2006). These mental health problems are additional contributors to functional impairment in carrying out family, work, and other societal roles; poor adherence to medical treatments; and adverse medical outcomes (Katon, 2003).
Patients with cancer (like those with other chronic illnesses) identify a number of other problems that adversely affect their health care and recovery, including poor communication with physicians, lack of knowledge about their illness and its management, lack of transportation to health care appointments, financial problems, and lack of health insurance (Wdowik et al., 1997; Eakin and Strycker, 2001; Riegel and Carlson, 2002; Bayliss et al., 2003; Boberg et al., 2003; Skalla et al., 2004; Jerant et al., 2005; Mallinger et al., 2005). Fifteen percent of households affected by cancer report having left a doctor's office without getting answers to important questions about the illness (USA Today et al., 2006). The American Cancer Society and CancerCare report receiving more than 100,000 requests annually for transportation so patients can get to medical appointments, pick up medications, or receive other health services. In 2003, nearly one in five (12.3 million) people with chronic conditions lived in families that had problems paying medical bills (May and Cunningham, 2004; Tu, 2004). Among uninsured cancer survivors, more than one in four delayed or decided not to get treatment because of its cost, and 41 percent were unable to pay for basic necessities, including food (USA Today et al., 2006). About 5 percent of the 1.5 million American families who filed for bankruptcy in 2001 reported that medical costs associated with cancer contributed to their financial problems (Himmelstein et al., 2005).
Although family and loved ones often provide substantial amounts of emotional and logistical support and hands-on personal and nursing care (valued at more than $1 billion annually) in an effort to address these needs (Hayman et al., 2001; Kotkamp-Mothes et al., 2005), they often do so at great personal cost, themselves experiencing depression, other adverse health effects, and an increased risk of premature death (Schultz and Beach, 1999; Kurtz et al., 2004). Caregivers providing support to a spouse who report strain from doing so are 63 percent more likely to die within 4 years than others their age (Schultz and Beach, 1999). The emotional distress of caregivers also can directly affect patients. Studies of partners of women with breast cancer (predominantly husbands, but also "significant others," daughters, friends, and others) find that partners' mental health correlates positively with the anxiety, depression, fatigue, and symptom distress of women with breast cancer and that the effects are bidirectional (Segrin et al., 2005, 2007).
Effects of Psychosocial Problems on Physical Health
The psychosocial problems described above can adversely affect health and health care in many ways. For example, a substantial literature has documented low income as a strong risk factor for disability, illness, and death (IOM, 2001; Subramanian et al., 2002). Inadequate income limits one's ability to purchase food, medications, and health care supplies necessary for health and health care, as well as to secure necessary transportation and obtain relief from other stressors that can accompany tasks of everyday life (Kelly et al., 2006). As noted above, lack of transportation to medical appointments, the pharmacy, the grocery store, health education classes, peer support meetings, and other out-of-home health resources is common, and it can pose a barrier to health monitoring, illness management, and health promotion.
Depressed or anxious individuals have lower social functioning, more disability, and greater overall functional impairment than those without these conditions (Spitzer et al., 1995; Katon, 2003). Distressed emotional states also often generate additional somatic problems, such as sleep difficulties, fatigue, and pain (Spitzer et al., 1995; APA, 2000), which can confound the diagnosis and treatment of physical symptoms. Patients with major depression as compared with nondepressed persons also have higher rates of unhealthy behaviors such as smoking, a sedentary lifestyle, and overeating. Moreover, depression and other adverse psychological states thwart behavior change and adherence to treatment regimens by impairing cognition, weakening motivation, and decreasing coping abilities. Evidence emerging from the science of psychoneuroimmunology-the study of the interactions among behavior, the brain, and the body's immune system-is beginning to show how psychosocial stressors interfere with the working of the body's neuro-endocrine, immune, and other systems.
In sum, people diagnosed with cancer and their families must not only live with and manage the challenges and risks posed to their physical health, but also overcome psychosocial obstacles that can interfere with their health care and diminish their health and functioning. Unfortunately, the current medical system deploys its resources largely to address the former problems and often ignores the latter. As a result, patients' psychosocial needs frequently remain unacknowledged and unaddressed in cancer care.
Cancer Care Is Often Incomplete
Many people living with cancer report that their psychosocial health care needs are not well addressed in their care. At the most fundamental level, throughout diagnosis, treatment, and post-treatment, patients report dissatisfaction with the amount and type of information they are given about their diagnosis, their prognosis, available treatments, and ways to manage their illness and health. Health care providers often fail to communicate this information effectively, in ways that are understandable to and enable action by patients (Epstein and Street, 2007). Moreover, individuals diagnosed with cancer often report that their care providers do not understand their psychosocial needs; do not consider psychosocial support an integral part of their care; are unaware of psychosocial health care resources; and fail to recognize, adequately treat, or offer referral for depression or other sequelae of stress due to the illness in patients and their families (President's Cancer Panel, 2004; Maly et al., 2005; IOM, 2007). Twenty-eight percent of respondents to the National Survey of U.S. Households Affected by Cancer reported that they did not have a doctor who paid attention to factors beyond their direct medical care, such as sources of support for dealing with the illness (USA Today et al., 2006). A number of studies also have shown that physicians substantially underestimate oncology patients' psychosocial distress (Fallowfield et al., 2001; Keller et al., 2004; Merckaert et al., 2005). Indeed, oncologists themselves report frequent failure to attend to the psychosocial needs of their patients. In a national survey of members of the American Society of Clinical Oncology, a third of respondents reported that they did not routinely screen their patients for distress. Of the 65 percent that did do so, methods used were often untested or unreliable. In a survey of members of an alliance of 20 of the world's leading cancer centers, only 8 reported screening for distress in at least some of their patients, and only 3 routinely screened all of their patients for psychosocial health needs (Jacobsen and Ransom, 2007).
A number of factors can interfere with clinicians' addressing psychosocial health needs. These include the way in which clinical practices are designed, the education and training of the health care workforce, shortages and maldistribution of health personnel, and the nature of the payment and policy environment in which health care is delivered. Because of this, improving the delivery of psychosocial health services requires a multipronged approach.
In this context, the National Institutes of Health asked the IOM to empanel a committee to conduct a study of the delivery of the diverse psychosocial services needed by cancer patients and their families in community settings. The committee was tasked with producing a report describing barriers to access to psychosocial services and ways in which these services can best be provided, analyzing the capacity of the current mental health and cancer treatment system to deliver such care, delineating the associated resource and training requirements, and offering recommendations and an action plan for overcoming the identified barriers. The committee interpreted "community care" to refer to all sites of cancer care except inpatient settings.
This study builds on and complements several prior reports on cancer care. First, two recent reports address quality of care for cancer survivors. From Cancer Patient to Cancer Survivor: Lost in Transition (IOM and NRC, 2006) well articulates how high-quality care (including psychosocial health care) should be delivered after patients complete their cancer treatment. Childhood Cancer Survivorship: Improving Care and Quality of Life (IOM and NRC, 2003) similarly addresses survivorship for childhood cancer. The recommendations made in the present report complement and can be implemented consistent with the vision and recommendations put forth in those reports. Second, two other recent reports address palliative care: Improving Palliative Care for Cancer (IOM and NRC, 2001) and When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (IOM, 2003). For this reason, the additional considerations involved in providing end-of-life care are not addressed in this report.
Excerpted from CANCER CARE FOR THE WHOLE PATIENT Copyright © 2008 by National Academy of Sciences. Excerpted by permission.
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The Psychosocial Needs of Cancer Patients 23
The Reach of Cancer 24
Cancer-Induced Physical Stressors 26
Psychosocial Problems 30
Obstacles to Managing Psychosocial Stressors 37
Purpose, Scope, and Organization of This Report 42
Consequences of Unmet Psychosocial Needs 51
Psychosocial Stressors and Their Effects on Patients 53
Alterations in Body Functioning Due to Stress 61
Adverse Effects on Families and the Larger Community 67
Psychosocial Health Services 81
A Diversity of Services 82
Evidence of Effectiveness 83
Ready Availability of Key Services 108
A Model for Delivering Psychosocial Health Services 153
Effective Delivery of Psychosocial Health Care 153
A Unifying Model for Care Delivery 159
A Recommended Standard for Care 199
Annex 4-1: Empirically Validated Models of and Clinical Practice Guidelines for the Effective Delivery of Psychosocial Health Services 201
Implementing the Standard of Care 219
Approaches to the Delivery of Psychosocial Health Services 220
Public- and Private-Sector Policy Support 241
Supports for and Constraints on Interventions to Deliver Psychosocial Services 242
Supports for and Constraints on Service Availability 260
Use of Performance Measurement to Improve the Quality of Psychosocial Health Care 269
Conclusions and Recommendations 274
Preparing the Workforce 283
A Large and Diverse Workforce 284
Workforce Education in Biopsychosocial Approaches to Care 288
Educational Barriers to Psychosocial Health Care 309
Conclusions and Recommendation 319
A Research Agenda 329
A Taxonomy and Nomenclature for Psychosocial Health Services 329
Effectiveness and Health Services Research 330
Report Evaluation 338
Committee Member Biographies 343
Study Methods 353
Recommendations from Prior Selected Reports 379