A range of services can help patients and their families manage the psychological/behavioral and social aspects of illness that can adversely affect their health care and outcomes. An individual’s own psychological and informal social resources often counteract many of these stressors. However, when these resources are not available or are overwhelmed by the number, magnitude, or duration of stressors, or when a problem requires professional intervention, formal services are needed.
Evidence supports the effectiveness of services aimed at relieving the emotional distress that accompanies many chronic illnesses, including cancer, even in the case of debilitating depression and anxiety. Good evidence also underpins a number of interventions designed to help individuals adopt behaviors that can help them manage disease symptoms and improve their overall health. Other psychosocial health services, such as transportation to health care or financial assistance to purchase medications or supplies, while not the subject of effectiveness research, have wide acceptance as humane interventions to address related needs, and are longstanding components of such public programs as Medicaid and the Older Americans Act. Many health and human service providers deliver one or more of these services. In particular, strong leadership of organizations in the voluntary sector has created a broad array of psychosocial support services—sometimes available at no cost to patients. Together, these services have been described as constituting a “wealth of cancer-related community support services” (IOM and NRC, 2006:229).
A DIVERSITY OF SERVICES
An array of services exists to address the varied psychosocial problems and needs (summarized in Chapter 1) that often accompany cancer and its treatment (see Table 3-1). As defined in Chapter 2, psychosocial health services are those psychological and social services that enable patients, their families, and health care providers to optimize biomedical health care and to manage the psychological/behavioral and social aspects of illness and its consequences so as to promote better health. We note that some level of psychosocial support (e.g., providing emotional support and information about one’s illness) accompanies much of routine health care. Family members and other informal supports also meet many emotional and logistical needs in times of illness. However, when this level or type of support is insufficient to address a patient’s needs, more formal services are needed. Definitions and descriptions of these services and the extent of evidence supporting their effectiveness in meeting identified patient needs are discussed below.
In addition to these services to address problems that arise at the level of the patient (the need for which will likely vary among individuals), psychosocial interventions are needed on a more uniform basis within clinical practices to address problems arising at the level of the health care system, such as failure to identify patients’ psychosocial needs, to link patients to effective services, and to support them in managing their illness and health. These more consistently needed provider- and system-level interventions to deliver effective psychosocial services are discussed in Chapters 4 and 5.
EVIDENCE OF EFFECTIVENESS
The effectiveness of some psychosocial health services has been substantiated through research. Others (such as the provision of transportation or financial assistance to purchase medications) have such long-standing and wide acceptance that they have not been the subject of much research interest. Others addressed in more recent effectiveness research appear promising, but require further study to clarify the extent of their effectiveness. Interest remains high in still others that have not yet shown effectiveness in research studies as multiple parties seek effective ways to meet pressing needs. This variation in the extent to which psychosocial health services are evidence based is similar to the variation seen in research findings supporting the effectiveness of individual biomedical health care services (Neumann et al., 2005; IOM, 2007). The approach used by the committee to evaluate the effectiveness of individual psychosocial health services is described in Appendix B.
Limitations in Taxonomy and Nomenclature
A serious problem encountered by the committee as it sought to identify and evaluate evidence of the effectiveness of psychosocial health services is the lack of a taxonomy and nomenclature for referring to these services. This is manifest in the controlled vocabularies of major bibliographic databases and other indexing services. For example, the term “psychosocial” is not a medical subject heading (MeSH) used for indexing publications by the National Library of Medicine, and as of April 30, 2007, no conceptual definition of “psychosocial” could be found in the National Cancer Institute’s Metathesaurus (http://ncimeta.nci.nih.gov) or Dictionary of Cancer Terms (http://www.cancer.gov/dictionary/). Moreover, when the terminology “psychosocial services” is used in health care, it is used inconsistently. As a result, the committee’s first task was to agree upon a definition of psychosocial services to guide its work. The committee’s review of different definitions in the field and its considerations in developing the definition put forth in Chapter 2 are discussed in Appendix B.
Examining the effectiveness of individual psychosocial services is similarly confounded by absent or imprecise terminology within and across databases such as MeSH/Medline, PsycINFO, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and EMBASE. For example, “peer support” is not a MeSH heading. Moreover, even when different researchers use the same word, it may not always refer to the same intervention. For example, group psychotherapy (Goodwin, 2005), peer support delivered in a group situation (Ussher et al., 2006), group education (Weis, 2003), and varying combinations of these (Weis, 2003) (not always identified as multicomponent interventions) are all frequently labeled “support group” interventions—which unsurprisingly have been found to have inconsistent effects. Similarly, “illness self-management” or “self-management” is not a MeSH heading; it awkwardly and imprecisely maps to “self-care” in the MeSH database. In oncology, many illness self-management or self-care interventions are also referred to as psychoeducation or, more recently, cognitive-behavioral interventions.
The imprecise and unreliable vocabulary used to refer to psychosocial services is manifest in evidence reviews and analyses of the effectiveness of “psychosocial services” in toto. For example, the series of articles entitled “The Great Debate” (Relman and Angell, 2002; Williams and Schneiderman, 2002; Williams et al., 2002)—whose titles (“Resolved: Psychosocial Interventions Can Improve Clinical Outcomes in Organic Disease [Pro]” and “Resolved: Psychosocial Interventions Can Improve Clinical Outcomes in Organic Disease [Con]”) and some of their content suggest the methodological soundness (and desirability) of lumping together divergent psychosocial health services and rendering an overarching judgment about their effectiveness. Reviews of the effectiveness of aggregate psychosocial services are problematic just as such reviews of the effectiveness of biomedical health care in the aggregate would be unhelpful (and unlikely)—a point made in the concluding article in the “Great Debate” series (see Lundberg, 2002). The committee determined that the absence of a controlled vocabulary impedes the identification, interpretation, and implementation of research findings on psychosocial health care, and therefore makes the following recommendation.
Recommendation: Standardized nomenclature. To facilitate research on and quality measurement of psychosocial interventions, the National Institutes of Health (NIH) and the Agency for Healthcare Research and Quality (AHRQ) should create and lead an initiative to develop a standardized, transdisciplinary taxonomy and nomenclature for psychosocial health services. This initiative should aim to incorporate this taxonomy and nomenclature into such databases as the National Library of Medicine’s Medical Subject Headings (MeSH), PsycINFO, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and EMBASE.
Provision of Information
As discussed in Chapter 1, individuals who are being treated for cancer express the need for a wide range of information on their clinical condition and care. Patients need information about the onset, progression, treatment, and management of their disease and help in interpreting sometimes overwhelming quantities of complex information. They need to be able to find out about the normal course of their condition, the treatments that are available, and those treatments’ expected outcomes and side effects so they can make treatment decisions that are consistent with their preferences and care for themselves on a daily basis. Continuing changes in health care delivery and financing also make it increasingly important for cancer patients to have information that will help ensure that they receive high-quality care. This means having access to information about the qualifications of physicians; the relative quality ratings for hospitals and the insurance plans in which they participate; and costs for diagnostic tests, treatments, and hospitalization. It also means being able to obtain information on such services as transportation and other logistical resources, financial assistance, and support groups in the area.
As with the array of psychosocial health services generally, the effectiveness of providing patients with these different types of information has not uniformly been the subject of research. The provision of information about insurance coverage or sources for obtaining wigs, financial support, or logistical assistance, for example, typically is not questioned as a useful service. The broad range of voluntary organizations that provide such information at no cost to consumers and the volume of patient inquiries they handle are further testimony to their usefulness. (A table listing selected nationwide sources of information on cancer and cancer-related services available at no cost to patients is presented in the next section of this chapter.)
In contrast, providing patients with information to enable them to care for themselves on a daily basis and make treatment decisions that best meet their goals and values has been the subject of much research. Indeed, the Institute of Medicine (IOM) has previously recommended that, “patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision making” (IOM, 2001:8).
Although there is little evidence that providing information about the onset, progression, treatment, and management of their disease systematically affects patient behaviors that in turn influence health outcomes, a substantial literature documents the beneficial effects of interventions aimed at improving patients’ participation in their care (Coulter and Ellins, 2006). While providing patients with information about their illness and potential treatments will always be only one of many factors that influence a specific behavior, it is clearly an important aspect of improving their participation in their care.
The effect of providing condition-specific information tailored to the individual patient’s medical situation or condition has been the subject of many randomized controlled trials involving patients with cancer and other conditions, such as low back pain, diabetes, arthritis, and asthma. An analysis of systematic reviews of the effects of provision of health information found that, although the provision of information on the treatment and management of disease did not affect health status, written information improved knowledge and recall of health information, and the provision of verbal and written information together had a greater impact than the provision of either alone (Coulter and Ellins, 2006).
A variety of strategies for transmitting information about their disease and its treatment to cancer patients have been tested in high-quality randomized controlled trials. Such strategies include presenting information through print materials, audiotapes, CD-ROMs, computer decision aids, and videotapes. These studies have found evidence for the effectiveness of such strategies in increasing knowledge and satisfaction with decision making, as well as reducing decisional conflict (Epstein and Street, 2007).
For example, McPherson and colleagues (2001) conducted a systematic review to determine effective methods of information delivery to cancer patients. Ten studies met the inclusion criteria, covering interventions using audiovisual aids, audiotapes, interactive media, and written information. Written information was found to enhance recall and knowledge, and patients and their families valued practical information booklets. Two important findings from the review are that cancer patients are a heterogeneous population whose information needs differ according to their preferences and coping styles, and that tailoring information to the patient reduces the amount of information needed and increases the relevance and recall of the information provided (McPherson et al., 2001).
Another systematic review of cancer patients’ use of the Internet and its impact on health outcomes identified 24 surveys representing a total of 8,679 patients with cancer. Four types of Internet use were identified: communication (e-mail), community (virtual support groups), content (health information), and e-commerce. While a great majority of the studies on providing information to cancer patients have evaluated print materials and computer-based personalization of information, the modest amount of research findings on Internet-based information indicates that it has positive effects on self-efficacy (a person’s belief in his/her ability to carry out a course of action to reach a desired goal) and task behavior, encourages patients to make health-related decisions, and improves confidence in the doctor–patient encounter. However, patients reported feeling overwhelmed by the sheer volume of information available on line and were confused by conflicting medical information on cancer treatment (Eysenbach, 2003).
It is particularly important to provide patients with information about treatment decisions so that they can participate in choosing among available effective options. Decision-support tools array such information in a way that enables patients to compare the risks and benefits of different treatments that are suited to their situation. An analysis of systematic reviews of decision aids for patients found that, as with the provision of information on disease and its treatment generally, such aids improve knowledge and information recall and lead to increased involvement in the decision-making process, and that patients who use them experience less decisional conflict. There is limited evidence that decision aids affect health service utilization in a way that in some cases leads to reduced costs, but no effects on health outcomes have been demonstrated (Coulter and Ellins, 2006).
Multicomponent educational interventions, such as those including use of an educational audiotape, workbook, and values clarification exercise, also have been designed to provide the information patients need. One well-conducted randomized controlled trial (Goel et al., 2001) among surgical practices in Canada involving women with breast cancer who needed to decide between breast-conserving treatment and mastectomy found evidence of the effectiveness of such a multicomponent intervention, but only for women who were uncertain about what decision to make. There is some evidence that nonprint formats are of greater benefit for underserved groups and that these formats have an impact on health behavior (Coulter and Ellins, 2006). Nonprint formats are also useful in communicating with individuals with low literacy.
Services to Help Cope with Emotions
A wide variety of mental health therapies have been developed to treat emotional distress and mental health problems.1 Although it was beyond the scope of this report to examine the evidence in support of all types of services to address all manifestations of emotional distress and mental health problems in individuals with cancer,2 the discussion below reviews peer support programs selected because of their widespread use and availability, as well as counseling/psychotherapy and medications that address depression and anxiety—among the most common mental health conditions affecting individuals diagnosed with cancer.
Peer support programs Peer support is defined as a relationship in which people with the same condition provide emotional support to each other and share knowledge about dealing effectively with that condition. Vicariously experiencing the successes of others similar to oneself is a primary pathway to building one’s own self-efficacy (Bandura, 1997). Self-efficacy is viewed as a key predictor of how effectively individuals can motivate themselves and persevere in the face of adversity, how much effort they will make in pursuing a course of action, and what their emotional reactions to the course of events will be. Self-efficacy is also an important determinant of how extensively knowledge and skills are obtained (Pajares, 2002), and there is evidence that it is a critical factor in an individual’s successful self-management of a range of chronic illnesses (Lorig et al., 2001; Lorig and Holman, 2003).
Peer support programs can provide one-on-one support (as in the American Cancer Society’s Reach to Recovery program) or support from groups. Peer support groups (also called self or mutual support groups) have been studied most often. Emotional support is a primary component of peer support groups (Weis, 2003; Ussher et al., 2006). These groups also typically provide information and education, sharing of coping skills, acceptance by others in similar situations, a sense of normalcy, and diminished social isolation (Barlow et al., 2000; Campbell et al., 2004). Many of these supports are the same as those provided by beneficial informal social networks described in Chapter 2, which have been found to reduce morbidity and mortality. Expected outcomes include increased confidence and a sense of control in relation to self, improved coping with one’s illness, and more effective interactions with others, particularly medical professionals. Together, these outcomes promote a helpful sense of self-efficacy in dealing with the varied challenges of the illness and its treatment (Bandura, 1997; Thaxton et al., 2005; Ussher et al., 2006).
Peer support groups are widely used to help people with a broad range of illnesses. One of the largest and most successful is Alcoholics Anonymous. Support groups for people living with HIV or AIDS are another example (Spirig, 1998). Such groups are often developed by individuals who feel marginalized socially by their illness because of the associated stigma, disfigured appearance, embarrassment, disability, or threat to life (Davison et al., 2000). After World War II, assisted by the American Cancer Society, patients who had had a laryngectomy, colostomy, or mastectomy began to form support groups in major cities to help cope with these permanent and stigmatizing body changes. Today, support groups for cancer patients are organized through nonprofit advocacy organizations—some devoted to patients with a particular form of cancer (e.g., The Leukemia & Lymphoma Society) and others, such as Gilda’s Clubs, The Wellness Community, and CancerCare, with a more general focus. These support groups are the most widely available form of free psychological assistance for patients with cancer.
Peer groups have developed to help patients of all ages cope with cancer in all of its stages: at diagnosis, during active treatment, and during advanced disease (Plante et al., 2001). They are used most widely by patients with particular forms of cancer, the most common being prostate and breast (e.g., Us Too groups for prostate cancer and breast cancer support groups) (Goodwin, 2005). Today, the support offered by such groups frequently includes services from a health or human services professional, such as a physician, nurse, psychologist, or social worker, who facilitates group meetings or provides patient education or other services to the group. In fact, many groups that are called peer groups actually have co-leaders who are professionals. This involvement from health care providers often makes a “pure” peer group difficult to define; most groups today are to some extent hybrids involving both consumer peers and professionals. Research comparing peer and professionally led support groups has found no difference as long as the sense of community and mutual respect is maintained (Barlow et al., 2000).
Research on the effectiveness of peer support groups has been difficult because such groups often arise naturally out of communities when people sense a need,3 and therefore do not easily lend themselves to the control of variables as is required to conduct controlled clinical trials. The varied components of support groups (e.g., group psychotherapy, informal emotional support, education and information) and the diverse participants and facilitators also confound the interpretation of research findings. According to Davison and colleagues (2000:216) in their review of the state of the art of peer support, “Support groups constitute a category with fuzzy boundaries, and as such they make scientists uneasy. In the interest of elegance and experimental control, we often prefer mutually exclusive categories and singular causal models…. Support groups cannot be replicated in the lab, but the tendency of some types of patients to seek each other’s company … emerges statistically as a clear pattern replicated across cities.”
Although evidence for the effectiveness of peer support interventions is less clear than desirable, overall it supports their effectiveness in bringing about a number of desirable outcomes—such as improved knowledge, coping skills, and sense of self-efficacy—across a wide range of mental and general medical conditions, including HIV/AIDS (Spirig, 1998) and cancer (Barlow et al., 2000; Dunn et al., 2003; National Breast Cancer Centre and National Cancer Control Initiative, 2003; Campbell et al., 2004; Zabalegui et al., 2005; Ussher et al., 2006). However, not all patients may need or benefit equally from participation in peer support groups (Helgeson et al., 2000); those with the lowest self-esteem and self-efficacy in coping with depressive symptoms appear to benefit most (Helgeson et al., 2006).
Better understanding of the effectiveness of peer support groups will require more randomized controlled trials in which the participants, content, and outcome variables are clearly delineated. These trials also should involve multiple centers so as to encompass populations of sufficient size to allow study of subsamples and types, duration, and content of interventions. Use of a standard set of outcome measures across studies also would allow more meaningful comparisons across studies through meta-analysis. Research is needed as well that compares group formats so as to identify the treatment and personal variables that lead to the best and poorest outcomes. Moreover, most peer support groups have developed in middle-class, Caucasian, and female populations; studies involving other ethnic and socioeconomic groups and men are needed, as are studies of one-to-one forms of peer support.
The Internet is widely used for providing “virtual” peer support groups. Although such groups are difficult to monitor with respect to their delivery and quality of services (when no facilitator modulates interactions) and will not be easy to evaluate for efficacy, their increasing use suggests that research also should be directed toward assessment of their efficacy, especially since they provide a means to reach home-bound and geographically isolated patients at minimal expense (Eysenbach et al., 2004; Hoybye et al., 2005; Lieberman and Goldstein, 2005; Winefield, 2006; Stein et al., 2007).
Counseling and psychotherapy Counseling and psychotherapy encompass “a wide range of techniques used by a designated professional that have as their common feature the attempt to influence the patient’s behavior, emotions, thoughts, and attitudes through psychological techniques, most often verbal interchange, in the relationship between the psychotherapist and the patient” (Klerman, 1989:1730). Although counseling and psychotherapy have been found to be effective for a number of different mental health problems in patients with a range of general medical illnesses (Wells et al., 1988; Schulberg et al., 1998), findings on their effectiveness in helping patients with cancer and analyses of these findings in the aggregate have been mixed.
The large number of research trials of psychotherapeutic interventions with adult patients4 (conducted at all stages of disease, though focusing mainly on newly diagnosed patients, those in active treatment, and those with metastatic disease) has enabled several meta-analyses and other systematic reviews of the evidence. These reviews also have yielded mixed results because of variations in the criteria established for inclusion as an adequately designed clinical trial; however, they generally have found that evidence supports the efficacy of psychotherapy in the treatment of anxiety and depressive symptoms in adults (Devine et al., 1995; Meyer and Mark, 1995; Sheard and Maguire, 1999; AHRQ, 2002; Barsevick et al., 2002; Rehse and Pukrop, 2003; Pirl, 2004; Jacobsen et al., 2006). In a debate in the Annals of Behavioral Medicine, Andrykowski and Manne (2006) reason that clinically relevant efficacy can be assumed on the basis of two or more well-conducted randomized controlled trials utilizing Consolidated Standards of Reporting Trials (CONSORT) criteria. When criteria for efficacy are highly restrictive (as in Newell et al., 2002—that is, requiring greater than half of outcome measures to be statistically significant)—evidence for efficacy appears to be weaker (Coyne et al., 2006). An additional problem contributing to the mixed results of these analyses appears to be related in part to the fact that most early studies of these psychosocial services did not require elevation of a baseline target symptom in subjects, thus diminishing the likelihood of showing a significant reduction in the identified symptom in some studies. Jacobsen and colleagues’ (2006) comprehensive review found that fewer than 5 percent of studies had required a clinically significant baseline level of distress in their design, an observation made by Sheard and Maguire (1999) years earlier. Nonetheless, the norm for studies of these psychosocial interventions has been to include all patients, regardless of their level of distress.
Having reviewed the various systematic reviews and individual studies, the committee concludes that there is statistically significant, clinically relevant evidence to support the effectiveness of psychotherapeutic interventions in helping to manage anxiety or depression in adults with cancer—across disease sites, treatments, and types of interventions (e.g., psychoeducation, supportive therapies, cognitive therapies, relaxation techniques), and delivered to both individuals and groups. These findings apply despite the wide range of interventions, diversity of patients, and variety of study designs. The review of 60 studies by Jacobsen and colleagues (2006), examining only well-designed controlled studies with clinically relevant outcome data, found support for incorporating tested interventions into clinical practice guidelines. The National Cancer Control Initiative in Australia similarly found strong evidence for interventions that used cognitive-behavioral, supportive, and psychoeducational approaches for the management of depression and anxiety (National Breast Cancer Centre and National Cancer Control Initiative, 2003). Evidence with respect to three key types of psychotherapies is summarized below:
- Cognitive-behavioral therapy—This approach has been the most widely studied in randomized controlled trials and has been shown to help reduce psychological symptoms (anxiety and depression), as well as the physical symptoms of pain, nausea/vomiting, and fatigue, most effectively during the initial and treatment phases of illness. The approach involves teaching problem solving, reframing of thoughts, and ways of constructive coping, and often includes relaxation and guided imagery. The adjuvant therapy developed by Greer and colleagues is a well-studied model based on these principles (Greer et al., 1992; Moorey et al., 1994; Moynihan et al., 1998). Two studies (Nezu et al., 2003; Boesen et al., 2005) using cognitive-behavioral skill-based interventions found they were most beneficial for those who entered the trial with highest distress.
- Supportive psychotherapy—This approach involves providing emotional support and encouragement, focusing on emotional responses, and encouraging adaptive coping. Randomized trials have tested manualized supportive-expressive and supportive-existential psychotherapy for patients with early and advanced disease. All of these trials have shown efficacy in reducing distress, improving quality of life, and helping patients cope with the physical aspects of illness. Overall, there is strong evidence from clinical trials that these approaches yield benefits in reducing anxiety and depressive symptoms and improving well-being (Spiegel et al., 1981; Goodwin et al., 2001; Kissane et al., 2007). Another type of supportive psychotherapy—interpersonal psychotherapy—focuses on the role changes and the conflicts and strains related to illness. The approach has been studied for treatment of depression in patients with HIV/AIDS (Markowitz et al., 1993) with good results. Similar results were obtained in small trials in which the approach was adapted for use with cancer patients, being delivered face to face and by telephone for homebound patients by trained counselors using a manual (Alter et al., 1996; Donnelly et al., 2000). In practice, supportive psychotherapy is a flexible therapeutic approach in which a skilled therapist applies aspects of cognitive-behavioral therapy and psychodynamic concepts while providing emotional support. The emphasis varies depending on the stage of illness and the level of severity of psychosocial and physical problems (Berglund et al., 1994a; Evans and Connis, 1995; McArdle et al., 1996). It is difficult to design controlled clinical trials that take into account the need for such flexibility in therapy.
- Family and couples therapy—While not widely studied in controlled trials involving patients with cancer, therapies that result in increased communication and cohesion and reduction of conflicts due to the strain of illness in one member appear to be of most benefit for families with dysfunctional issues (Kissane et al., 2006). The approach taken may be largely cognitive-behavioral or supportive therapy. Couples therapy has been studied in patients with cancer and has been found to be useful in reducing illness-related conflicts, particularly when there is sexual dysfunction involved (Manne et al., 2006).
In addition to evidence on the effectiveness of specific types of counseling or psychotherapy, there is interest in the effectiveness of counseling and psychotherapy when delivered via telephone, Internet, or other electronic communication technologies (e.g., teleconferencing). Telepsychiatry and counseling via phone have been recommended as approaches for delivering mental health services to patients in remote locations or in areas with a shortage of mental health professionals (McGinty et al., 2006), and there is evidence of their effectiveness (Marcus et al., 1998; Ruskin et al., 2004). (See Chapter 5 for a discussion of the use of remote resources to meet psychosocial health needs.) A recent systematic review of telephone-based interventions for mental illness also found evidence of their effectiveness, but noted that the limited number of studies conducted, their small sample sizes, and the lack of a randomized controlled trial methodology prevent drawing firm conclusions. The authors call for large-scale, randomized controlled trials to increase understanding of the efficacy of telephone interventions (Leach and Christensen, 2006). A recent IOM report similarly noted that use of Internet-mediated and other communications technologies for the delivery of mental health services requires additional effectiveness research, as well as specialized training of clinicians, additional protection of consumer information, and mechanisms for ensuring the competencies of those who provide such forms of care (IOM, 2006).
More helpful evidence about how best to deliver psychotherapeutic services could be produced through (1) use of large randomized trials of psychotherapeutic interventions of high quality using CONSORT guidelines; (2) intervention studies of patients with particularly stigmatizing forms of cancer, such as lung cancer; (3) more studies of men with a range of cancers, particularly prostate and colon; (4) more studies with children; (5) effectiveness and dissemination studies designed to adapt, implement, and test interventions with proven efficacy in routine clinical settings (as well as adaptations for telephone or Internet application); (6) studies of psychotherapeutic interventions in ethnically diverse populations; (7) intervention trials that would identify patients with elevated levels of targeted symptoms of anxiety or depression, or both, at baseline to permit assessment of clinically relevant levels of symptom change; and (8) studies including analysis of data from clinical trial settings with respect to cost in real-world clinical settings.
Psychopharmacological services Psychopharmacological services comprise the use of a range of medications known as psychotropic drugs to reduce anxiety, depression, and other mental health symptoms. These drugs have been well tested in clinical trials in depressed adults with cardiac disease, stroke, and diabetes, with results strongly supporting their efficacy (Jacobsen and Weinger, 1998; Lustman et al., 1992; Glassman et al., 2002; Rassmussen et al., 2003; Gill and Hatcher, 2006; Simon et al., 2007). Yet there have been few large-scale randomized controlled trials of psychotropic agents in patients with cancer, in part because of (1) high rates of attrition of study participants due to progressive illness and (2) symptoms of cancer, such as fatigue, that mimic symptoms of depression.
However, recent research and systematic reviews of research on the use of antidepressants (tricyclics, selective serotonin reuptake inhibitors [SSRIs], atypical antidepressants, a psychostimulant) and antianxiety drugs (benzodiazepines) in adult cancer patients suggest that they reduce depressive symptoms, major depression, and anxiety in these patients, though fewer of the studies focused on anxiety (National Breast Cancer Centre and National Cancer Control Initiative, 2003; Pirl, 2004; Jacobsen et al., 2006; Williams and Dale, 2006; Rodin et al., 2007). Results of several modest-sized trials also suggest the efficacy of antidepressants in the control of anxiety and depressive symptoms in adult patients with cancer (Costa et al., 1985; Holland et al., 1991, 1998; Wald et al., 1993; Heeringen and Zivkov, 1996; Razavi et al., 1996, 1999; Ly et al., 2002; Fisch et al., 2003; Jacobsen et al., 2006). The review of Jacobsen and colleagues (2006) found that antidepressants and anxiolytics are effective in preventing and relieving depression and anxiety and may be recommended in clinical practice guidelines. A similar conclusion was reached by Australia’s National Breast Cancer Centre and National Cancer Control Initiative (2003) and the National Comprehensive Cancer Network in the United States (Distress Management Guidelines Panel, 2003). Of note, one trial found that use of an SSRI prevented the development of depression in patients vulnerable to interferon-induced depressive symptoms/depression (Musselman et al., 2001). There is no evidence suggesting greater efficacy of one drug over others (Pirl, 2004; Jacobsen et al., 2006; Williams and Dale, 2006).
It will be necessary to have more multicenter controlled randomized trials using larger patient cohorts studied over longer periods to better assess the potential efficacy of drugs that may be slow in achieving clinical effects. Trials should be limited to patients with clearly defined significant levels of anxious or depressive symptoms at baseline, such as severe adjustment disorder with anxious or depressive symptoms or anxiety disorder, post-traumatic stress disorder, or mood disorder, to ensure the opportunity to observe a reduction in symptoms. Studies also are needed to compare the efficacy of one drug over another for a targeted symptom. Given the efficacy of psychotherapeutic services and psychotropic drugs in cancer patients, trials comparing the effectiveness of medications alone, psychotherapy alone, and the two combined should be conducted, as has been done in cardiac patients. Moreover, there is a critical need to examine the use of SSRIs and anxiolytics in adolescents with cancer since currently there is virtually no information base to generalize to pediatric oncology.
Help in Managing Illness Comprehensively
Illness self-management is defined as an individual’s “ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition” (Barlow et al., 2002:178). In general, interventions designed to support illness self-management include providing basic information about the illness and its treatment; providing education and coaching in skills needed to manage the illness, control symptoms, and interact with the health care system; and increasing patient self-efficacy (Lev et al., 2001). Education and coaching are generally tailored to the needs and learning styles of individual patients, encourage patients’ active participation in their care, and involve some form of problem-solving assistance. These basic elements of self-management support have often been combined with specific psychological or physical modalities, such as relaxation response or exercise. There is now considerable evidence for many chronic diseases other than cancer that interventions directed at improving patient knowledge, skills, and confidence in managing the illness improve outcomes (Chodosh et al., 2005). One of the best-studied illness self-management programs, found effective in randomized controlled trials, is the Chronic Disease Self-Management Program developed and offered by Stanford University School of Medicine (Stanford University School of Medicine, 2007). Self-management programs for a variety of chronic illnesses based on this model have been found to be effective in reducing pain and disability, lessening fatigue, decreasing needed visits to physicians and emergency rooms, and increasing self-reported energy and health for a variety of chronic illnesses, including heart disease, lung disease, stroke, and arthritis (Lorig et al., 2001; Bodenheimer et al., 2002; Lorig and Holman, 2003).5,6
The term “illness self-management” is most often associated with conditions such as diabetes mellitus for which lifestyle changes can significantly affect the severity and progression of the disease. For this reason, it might be thought that self-management may not apply to cancer care. The committee believes this would be an overly restrictive view of self-management behaviors. In the cancer care literature, many interventions have been designed to assist patients in coping with the various challenges presented by the illness and its treatment, such as physical symptoms (e.g., fatigue or nausea), psychological distress, sexual dysfunction, and interaction with multiple providers. These interventions share a common premise with self-management interventions for other chronic conditions—that patients (and their families) have a major role to play in addressing or managing these challenges, and their ability to fulfill this role competently can be improved by information, empowerment, and other support.
Self-management and self-care interventions aimed at improving physical function and quality of life in cancer patients have typically focused on the control of individual symptoms and generally have been individually administered by nurses, whereas self-management interventions in patients with conditions other than cancer have more often been conducted in groups. A limited number of interventions have targeted control of nausea (Winningham and MacVicar, 1988), fatigue (Dimeo et al., 1999, 2004; Schwartz, 1999, 2000; Dimeo, 2001; Schwartz et al., 2001), pain (Miaskowski et al., 2004), and lymphedema (McKenzie and Kalda, 2003). These interventions (most often provided by nurses in the cancer care setting) have been variously termed psychoeducational, self-care, self-management support, and more recently, cognitive-behavioral interventions.7 They have been administered to patients before therapy or the onset of symptoms as prevention, to those experiencing symptoms or distress, or to those who have completed therapy. They have included interventions provided by a nurse alone or complemented by computer programs, video presentations, and other tools. While there may be differences in the underlying theory, the interventions included under the four rubrics of psychoeducation, self-care, self-management support, and cognitive-behavioral interventions are all designed to increase an individual’s skill in managing the illness and its effects. However, some approaches to illness self-management used with cancer patients have been delivered in combination with the provision of skilled physical nursing care, which has confounded interpretation of the effectiveness of the psychosocial component of care.
The PRO-SELF program, the most extensively tested strategy, targets various symptoms of cancer and its treatment and has been evaluated in multiple randomized trials (Larson et al., 1998; Dodd and Miaskowski, 2000; West et al., 2003; Kim et al., 2004; Miaskowski et al., 2004). The intervention involves nurses coaching patients and their families. The content includes information designed to assist patients “in managing the cancer treatment experience,” including basic information about the disease and its treatment, symptoms, and approaches to symptom management. In addition to this information, patients receive coaching in the skills necessary to manage their symptoms—for example, mouth care for mucositis (Larson et al., 1998) or opioid use for pain (Miaskowski et al., 2004)—and problem-solving assistance. Studies of this strategy found significantly reduced pain intensity and more appropriate use of opioids (Miaskowski et al., 2004). Given and colleagues (2006) tested a cognitive-behavioral intervention that included classes focused on self-management, problem-solving, and communication with providers. Those receiving the experimental intervention reported significantly fewer severe symptoms at 10 and 20 weeks’ follow-up. In randomized controlled trials, related interventions have been shown to improve mood and vigor among patients with malignant melanoma (Boesen et al., 2005), reduce psychological distress after radiotherapy (Stiegelis et al., 2004), reduce fatigue and improve functional status among cancer survivors (Gielissen et al., 2006), and improve sexual function and reduce worry among patients with prostate cancer (Giesler et al., 2005).
McCorkle and colleagues have developed and studied interventions in which nurses help cancer patients and their family caregivers manage the impacts of the illness and its treatment. Delivered in the home by advanced practice nurses, the interventions generally involve assessment of physical, psychosocial, and functional health status; teaching, support, and counseling; the provision of hands-on skilled nursing care if needed; assistance in accessing community resources; and coordination with other health care providers and settings. In a series of randomized trials, these interventions helped patients with lung cancer maintain independence longer and reduced rehospitalizations (McCorkle et al., 1989), improved mental health status among patients with solid tumors (McCorkle et al., 1994), reduced distress among the spouses of dying patients with lung cancer (McCorkle et al., 1998), and improved survival among postsurgical cancer patients (McCorkle et al., 2000).
Efforts to give patients with cancer and their families the information, skills, and confidence needed to manage the physical, psychosocial, and communication challenges associated with cancer and its care appear to be warranted by the literature. Progress in this area could be accelerated by the development of a taxonomy of interventions that, if used by researchers, would help identify the components that contribute most to effectiveness.
Assistance in Changing Behaviors to Minimize Impacts of Disease
Concurrent with the success of contemporary cancer therapies in curing cancer or extending life expectancy and with the recognition that behavior change can contribute to the prevention of some cancers, investigations of lifestyle interventions aimed at promoting health in cancer survivors have increased in number and priority. Such interventions are aimed at preventing the recurrence of cancer and improving overall health by addressing, for example, tobacco and alcohol use, dietary practices, physical activity, weight reduction, sun protection, and participation in disease surveillance programs. Behavior change in several of these areas has been achieved through such interventions as advice from physicians, counseling from peers or trained clinical educators, and exercise training (Demark-Wahnefried et al., 2006). Although the optimal methods for helping patients achieve lasting behavior change are not fully known, the clear health advantages of not smoking and adhering to diet and exercise guidelines, along with the availability of some evidence to guide clinicians in helping patients make beneficial changes in their health-related behaviors, support the need to undertake such efforts. Progress made to date in modifying behaviors to promote health in patients with cancer is reviewed below.
Tobacco control Approximately 20 percent of adults with a history of cancer continue to smoke (Hewitt et al., 2003). Thus, tobacco control initiatives targeting cancer patients are critical to reducing or preventing the risk of cardiovascular, pulmonary, and neoplastic sequelae that can be associated with specific cancer treatments and aging. A limited number of randomized controlled trials have evaluated smoking cessation interventions in patients with cancer (Gritz et al., 1993; Wewers et al., 1994; Griebel et al., 1998; Browning et al., 2000; Sanderson Cox et al., 2002; Schnoll et al., 2003, 2005; Emmons et al., 2005). These interventions generally employ cognitive-behavioral counseling administered by health educators, nurses (Wewers et al., 1994; Griebel et al., 1998; Browning et al., 2000), dentists (Gritz et al., 1993), physicians (Gritz et al., 1993; Schnoll et al., 2003), or peers (Emmons et al., 2005). The interpretation of study results is limited by a variety of factors, however, including low statistical power (Stanislaw and Wewers, 1994; Wewers et al., 1994; Griebel et al., 1998; Browning et al., 2000), small sample size (Stanislaw and Wewers, 1994; Wewers et al., 1994; Griebel et al., 1998), high attrition rates (Gritz et al., 1993), and lack of long-term follow-up (Stanislaw and Wewers, 1994; Griebel et al., 1998; Schnoll et al., 2005). Consequently, results overall provide little or no evidence to support the effectiveness of behaviorally based smoking cessation interventions. Gritz and colleagues (1993) observed no difference in continuous abstinence rates at 12-month follow-up in patients with head and neck cancers randomized to receive standard advice to quit or surgeon-delivered smoking cessation counseling. Another study likewise found that quit rates did not differ among cancer patients who received standard smoking cessation counseling and those who received a brief smoking cessation intervention from their physician (Schnoll et al., 2003). In a third study, childhood cancer survivors randomized to receive peer-delivered smoking counseling with telephone follow-up were twice as likely to quit smoking as those who received self-help materials. However, the quit rate at 12-month follow-up for both groups was relatively modest (15 versus 9 percent), and the incremental cost of the intervention was substantial ($5,371 per additional quit) (Emmons et al., 2005).
Collectively, the available results of intervention trials in cancer populations, the well-established health risks associated with cancer and its treatment, and the morbidity associated with tobacco use support the need for more research aimed at developing effective, sustainable tobacco control interventions for cancer patients that take behavioral, psychological, and economic factors into account. In the interim, clinicians caring for patients with a past or present diagnosis of cancer should assess their smoking status and counsel those who smoke about the increased health risks they incur in doing so. This recommendation is based on the finding that among the population at large (i.e., without regard to having a particular diagnosis), individual face-to-face counseling by a trained therapist or nurse or brief advice from a physician can be effective in reducing smoking (Lancaster and Stead, 2004, 2005; Rice and Stead, 2004).
Diet and physical activity Diet and physical activity are important health behaviors that affect the risk of both cancer and cardiovascular disease. Common health conditions such as overweight/obesity, cardiovascular disease, and osteopenia/osteoporosis may develop as a primary effect of specific cancer treatments or as a secondary effect of cancer on functional status, and dietary interventions offer the potential to reduce such cancer-related morbidity and promote overall health in vulnerable patients. Dietary interventions targeting patients with cancer have been evaluated in 11 prospective controlled trials that focused on either weight reduction (de Waard et al., 1993; Loprinzi et al., 1996; Djuric et al., 2002), fat restriction (Boyar et al., 1988; Chlebowski et al., 1992; Rose et al., 1993; Kristal et al., 1997), or specific nutrient intake (Nordevang et al., 1992; Pierce et al., 1997; Hebert et al., 2001; Pierce et al., 2004). Intervention methods have involved primarily resource-intensive, individualized counseling sessions delivered by trained nutritionists, although some studies have relied on trained volunteer staff (Kristal et al., 1997) or commercial weight loss programs such as Weight Watchers (Djuric et al., 2002). In addition to individualized instruction, some interventions have used such approaches as group sessions or telephone counseling (Pierce et al., 2004). Study results indicate that these interventions are largely effective in promoting dietary change as determined by dietary intake (Chlebowski et al., 1992; Nordevang et al., 1992; Pierce et al., 1997, 2004; Hebert et al., 2001), body weight (Boyar et al., 1988; Chlebowski et al., 1992; de Waard et al., 1993; Rose et al., 1993; Loprinzi et al., 1996; Kristal et al., 1997; Hebert et al., 2001; Djuric et al., 2002), and hormonal status (Boyar et al., 1988; Rose et al., 1993). Notably, some studies were limited by high attrition rates, which in most cases were similar among treatment and control participants (Chlebowski et al., 1992; Kristal et al., 1997; Pierce et al., 1997; Djuric et al., 2002). Moreover, evidence supporting the sustainability of the positive impact of interventions beyond 1 year is limited (Chlebowski et al., 1992). Several ongoing multisite trials are aimed at evaluating maintenance of the effects of dietary interventions and the relationship to survival outcomes. Preliminary results of the Women’s Intervention Nutrition Study demonstrate significant reductions in dietary fat and weight in 290 women randomized to individual dietary instruction versus controls (Chlebowski et al., 1992). Investigators coordinating the Women’s Healthy Eating and Living Study Intervention Nutrition Study similarly observed significant increases in intake of vegetables, fruits, and fiber that was confirmed by nutrient biomarkers among patients with breast cancer randomized to receive individualized dietary telephone counseling (Pierce et al., 2004). Continued follow-up of these groups will provide important information about the impact of dietary interventions on cancer-free survival.
The benefits of regular physical activity include improvements in physical functioning, cardiorespiratory fitness, strength, flexibility, weight status, lean muscle mass, mood, and quality of life (McTiernan et al., 1998; Courneya and Friedenreich, 1999; Pinto and Maruyama, 1999; Courneya, 2003; Fairey et al., 2003; Schwartz, 2004; Knols et al., 2005). A number of studies of exercise interventions have been conducted among patients with cancer, with the overall goals of ameliorating cancer-related symptoms (Winningham and MacVicar, 1988; Courneya et al., 2003b; McKenzie and Kalda, 2003) and improving physical functioning (MacVicar et al., 1989; Winningham et al., 1989; Berglund et al., 1994b; Dimeo et al., 1997a, 2003, 2004; Segal et al., 2001; Burnham and Wilcox, 2002; Courneya et al., 2003a,c; Jones et al., 2004; Fairey et al., 2005; Pinto et al., 2005). Of these studies, 34 involved randomized or controlled clinical trials that employed various exercise modalities, including cardiovascular (Winningham and MacVicar, 1988; MacVicar et al., 1989; Winningham et al., 1989; Dimeo et al., 1997a, 1998, 2003; Mock et al., 1997, 2001; Schwartz, 1999, 2000; Na et al., 2000; Schwartz et al., 2001; Segal et al., 2001; Courneya et al., 2003a), resistance (Cunningham et al., 1986; Segal et al., 2003), and/or flexibility training (Kolden et al., 2002; Adamsen et al., 2003). Exercise interventions are generally described as “training programs” that vary in the nature of the training provided. Most are supervised by an exercise physiologist or similarly trained staff, but some are not. Some are delivered in a group setting, some are home-based, and some have both components. Some are described as self-paced.
Outcomes measured for exercise interventions include fatigue, quality of life, emotional distress, immunological parameters, aerobic capacity, and muscle strength. The majority of studies have found positive physiological and psychological outcomes as assessed by levels of fatigue (Mock et al., 1997; Schwartz, 1999; Mock, 2001; Schwartz et al., 2001; Segal et al., 2003), quality-of-life and psychological factors (Mock et al., 1997, 2001; Dimeo et al., 1999; Schwartz, 1999; Segal et al., 2001; Kolden et al., 2002; Adamsen et al., 2003; Courneya et al., 2003a), immunological parameters (Dimeo et al., 1997a,b, 2003; Na et al., 2000), aerobic capacity (MacVicar et al., 1989; Winningham et al., 1989; Dimeo et al., 1997a, 1998, 1999, 2003; Mock et al., 1997, 2001; Schwartz, 1999; Schwartz et al., 2001; Segal et al., 2001; Kolden et al., 2002; Adamsen et al., 2003; Courneya et al., 2003a), and muscle strength (Kolden et al., 2002; Adamsen et al., 2003; Segal et al., 2003). Exercise interventions have been found effective in improving oxygen capacity, fitness, strength, flexibility, and global health (MacVicar et al., 1989; Berglund et al., 1994b; Dimeo et al., 1997b; Segal et al., 2001, 2003; Burnham and Wilcox, 2002; Courneya et al., 2003c; McKenzie and Kalda, 2003). Several of these investigations observed increased engagement in social activities and reduction in sleep disturbance in addition to improved physiological outcomes (MacVicar et al., 1989; Berglund et al., 1994b). Anthropometric benefits reported following exercise interventions include positive effects on weight and adiposity as gauged by waist and hip measurements (Winningham et al., 1989; Burnham and Wilcox, 2002). One study demonstrated significant improvement in such biomarkers as blood pressure, heart rate, hemoglobin, and circulating hormone levels in patients with breast cancer participating in a home-based physical activity intervention (Pinto et al., 2005). Another found a favorable effect of exercise on biomarkers associated with the metabolic syndrome, including insulin-like growth factor and insulin-like growth factor-binding protein 3 (Fairey et al., 2003).
It should be noted, however, that many trials of exercise interventions had methodological shortcomings, including nonrandom treatment assignments and small sample sizes. Also, patients with breast cancer were the predominant diagnostic group targeted for study, and the generalizability of those findings to patients with other cancer diagnoses is not clear. Nonetheless, collective results suggest that exercise is associated with many benefits for the cancer survivor, although a positive impact on survival has not been established. Future trials are needed to elucidate the optimal type and intensity of exercise for patients with cancer, particularly those with unique vulnerabilities resulting from cancer-related therapies, such as limb-sparing surgery or anthracycline chemotherapy. Moreover, because regular physical activity and healthy dietary practices are both important to weight maintenance, continued follow-up in ongoing trials will be important to determine the effectiveness of addressing energy balance through multicomponent behavioral interventions targeting both exercise and dietary modification (Demark-Wahnefried et al., 2002, 2003a,b; Rock and Demark-Wahnefried, 2002).
Provision of Material and Logistical Resources
Receiving treatment for cancer in medical settings, complying with prescribed treatments while at home, caring for oneself or a family member, and performing important family and social roles despite illness require patients and caregivers to have certain material and logistical resources. These include transportation, lodging for patients and caregivers when they must travel long distances for outpatient therapy, child care, wigs and prostheses (breast, limb, other), and supplies for managing the side effects of cancer and its treatment (e.g., compression bandages or sleeves for lymphedema control, ostomy supplies). As noted earlier in this chapter, informal sources of support can often provide many of these services, such as transportation or child care. When the service is covered by insurance or a patient has other financial means, material resources can be purchased. When informal supports and/or financial resources are limited, however, services are needed from other, formal sources. As noted in Chapter 1, the American Cancer Society and CancerCare both report that they frequently provide assistance in securing transportation to health-related appointments, supplies needed for health care, medical equipment, wigs, and prosthetics.
The effect on health or health care of providing these material and logistical resources has been the focus of limited research, likely for multiple reasons. First, as noted earlier in the chapter, some of these services have such long-standing and wide acceptance as humane services that there has been little question as to whether they “work.” Transportation, for example, has long been acknowledged as a necessary resource for the receipt of health care, as is evident from its inclusion as a covered service since the inception of the Medicaid program. Moreover, the provision of many of these resources poses less physical risk than a new medication or other clinical treatment, thus attracting less attention as a priority focus for scare research dollars. Some of these services also have been perceived as “human services” rather than “health services” because they are not directly curative or biomedical in intent or origin, and are frequently provided through voluntary human services agencies as opposed to health care providers under third-party reimbursement. In addition, some of these resources may be perceived as “cosmetic” and thus of lower priority than life-saving medical treatments (Healey, 2003). When these services have been examined, the question often has been how to deliver them (often limited in availability) more efficiently and appropriately and how to prioritize their delivery to those in greatest need.
Among the sparse research that has sought to determine the effects on health or health care of providing logistical or material resources, one study documented that when individuals with cancer lacked transportation, treatment was foregone (Guidry et al., 1997). And studies of people with a variety of chronic diseases have found that environmental barriers such as cost and logistical obstacles interfere with the ability to manage their illness (Bayliss et al., 2003; Vincze et al., 2004). The absence of research on other types of support (e.g., use of breast prostheses generally and of different types) has in itself been identified as adversely affecting the quality of life of women after surgery for breast cancer (Healey, 2003).
The committee notes that the absence of research is not evidence of an intervention’s ineffectiveness. Moreover, the frequent provision of many of these services to patients and families by voluntary agencies (detailed in a table presented later in this chapter) indicates that these services likely help patients and their caregivers meet health-related psychosocial needs. The provision of transportation, supplies, and other logistical and material support when needed also can logically be assumed to decrease patient distress and increase the ability of both patients and caregivers to manage illness and its consequences.
Help in Managing Disruptions in Family, School, and Work Life
As described in Chapters 1 and 2, cancer and its treatment and sequelae can limit the ability of patients and families to perform their usual personal roles and their roles in the family and the larger society. Unaddressed, these limitations can lead to emotional and mental health problems for both patient and family, and the inability to accomplish developmental tasks, such as attaining educational goals and establishing and maintaining social relationships, and to perform meaningful work inside and/or outside of the family. A number of services are aimed at addressing these problems. These include services to assist patients who are disabled in performing routine activities of daily living; to assist patients in dealing with cognitive impairments and educational difficulties; to support families and other caregivers in dealing with the emotional, physical, and other stresses of caregiving; and to provide patients and their families with legal protections afforded by such laws as the Americans with Disabilities Act and the Family and Medical Leave Act. As is true for the services described above, evidence in support of the effectiveness of these services varies.
Assistance with activities of daily living Personal care services (e.g., services to help patients bathe, dress, use the toilet, and groom themselves), as well as homemaker and chore services, are designed to help compensate for temporary or permanent inability to perform these tasks due to fatigue, pain, or loss of function. These services are often provided by families and other sources of informal support (Hayman et al., 2001) and, as with the material and logistical resources described above, are often available to some extent as well through the Medicaid and Medicare programs, the Older Americans Act, and free-standing home health agencies reimbursed through third-party insurers or out-of-pocket purchase by consumers. Also as with the provision of material and logistical resources, these services have long-standing and wide acceptance, and the committee did not review evidence for their effectiveness.
Cognitive and educational assistance As described in Chapter 1, cognitive impairment—manifest, for example, in a decreased ability to pay attention and concentrate, short-term memory loss, diminished language ability, decreased information processing speed, and diminished visual–motor integration and spatial abilities—has been well documented in children and adults treated for cancer (Anderson-Hanley et al., 2003; IOM and NRC, 2003; Matsuda et al., 2005; Stewart et al., 2006). The nature of this impairment may differ depending on the patient, the type of cancer, and the treatment regimen. Cognitive impairment associated with treatment for breast cancer, for example, appears to occur in fewer than half of patients and is mild and transient, although when present, it may take years to resolve (Matsuda et al., 2005). On the other hand, the cognitive impairment associated with brain tumors and acute lymphoblastic leukemia (the most common childhood cancers) appears to be more severe and persistent, likely because of the radiation and chemotherapy specifically targeting the central nervous system that are part of the treatment protocols for these cancers and the more vulnerable condition of the rapidly developing brains of children.
Very little research has tested approaches to reducing the cognitive impairment associated with treatment for cancer8 in adults (McDougall, 2001). There is a need for well-designed longitudinal studies with baseline and ongoing measures of cognitive impairment using objective and sensitive measurement tools and approaches. These studies should also control for an array of confounding variables, such as depression, age, hormonal levels, and other treatments. Such studies would facilitate better understanding of the mechanisms, types, and severity and duration of cognitive impairment in adults, an essential precursor to the development of effective prevention, treatment, and rehabilitation interventions (Anderson-Hanley et al., 2003; Matsuda et al., 2005).
The development of services to address cognitive impairment in children has progressed somewhat further, and there is some early theoretical and empirical support for cognitive remediation, ecological or environmental interventions, and pharmacotherapy. Cognitive remediation involves identifying the patient’s specific cognitive deficits and then implementing interventions to help reduce these deficits and enable the patient to relearn through retraining and practicing salient cognitive tasks. Ecological or environmental interventions involve modifying the learning context and the methods used by the individual to acquire information and demonstrate knowledge. In school settings, for example, this could involve providing preferential seating, allowing additional time to take examinations, using true/false and multiple-choice tests rather than essay questions, and providing written handouts rather than requiring a child to copy material from the board (Butler and Mulhern, 2005). With respect to pharmacotherapy, methylphenidate, a medication used to treat children with attention-deficit disorder has shown some slight but encouraging preliminary results in children with cancer (Mulhern et al., 2004). Much more research is needed before interventions with quantified efficacy can be identified. In the interim, ecological interventions are unlikely to present significant risks to children and should be pursued; they can be included as part of school re-entry or reintegration programs, but these programs as yet have not been well studied (Prevatt et al., 2000). Cognitive testing should also be undertaken to help identify areas in need of remediation.
Family and caregiver support Because of the importance of caregivers as a source of social support to patients and the threats to their health posed by the physical, emotional, and other stresses associated with caregiving, a variety of services have been developed to support them in this role and to relieve some of their stress. These include provision of education about the illness and how to respond effectively to illness-related problems, caregiver support groups that provide emotional support and information, initiatives to increase patients’ competence in providing self-care, psychotherapy, respite care services, and combinations of some of these services (Sorensen et al., 2002). Two systematic literature reviews of such interventions generally yielded mixed and nonsignificant findings. These reviews encompass a relatively small number of studies (with typically small sample sizes) involving various types of interventions, including stress and activity management programs, problem-solving interventions, and telephone counseling, and measuring a variety of outcomes. Some studies found improved coping and confidence (Kotkamp-Mothes et al., 2005) or reduced distress or increased satisfaction for caregivers (Harding and Higginson, 2003). Positive results were most likely for self-reported improvement in coping skills and knowledge.
A review of additional individual studies found varied and overall weak results on an array of outcomes. Psychoeducational interventions showed a positive impact on caregiver stress and problem solving (Bucher et al., 2001; Manne et al., 2004) that was statistically significant only for studies with larger populations (e.g., Pasacreta and McCorkle, 2000). Similarly, caregivers in studies that focused on problem-solving and educational interventions reported improved confidence in problem solving, but the study designs limit generalizability because of either nonrandomization of subjects or problems with selective attrition from studies. Studies using psychobehavioral interventions have shown modest impacts on selected variables, such as caregiver response to symptoms (Given et al., 2006).
There is some evidence for the effectiveness of interventions targeting caregivers of patients without regard to cancer diagnosis. Although in general it appears that the provision of information alone has little or no impact on most behaviors and outcomes (Bhogal et al., 2003; Forster et al., 2006), education in combination with other interventions (e.g., support groups or counseling) has shown modest effects on outcomes such as caregivers’ self-reported comfort or stress reduction. Combination programs including such services as behavioral interventions, nursing care, and exercise also have been shown to have modest effects on some outcome variables (Roberts et al., 2000; Bennet, 2002; Sorensen et al., 2002). Combination programs for elders with dementia, including respite, psychoeducation, counseling, and emotional support, have resulted in increased caregiver satisfaction and in some studies, delayed institutionalization (Knight et al., 1993; McNally et al., 1999; Gitlin et al., 2003). On the other hand, two studies found that respite care for caregivers of patients with Alzheimer’s disease did not result in reduced stress and burden of lasting duration for caregivers (McNally et al., 1999; Lee and Cameron, 2006). The generalizability of these findings to interventions targeting cancer patients is unclear; a meta-analysis of a variety of caregiver support interventions found that caregivers of patients with dementia benefited less from such intervention than did others (Sorensen et al., 2002).
Overall, it appears that these types of educational, problem-solving, and supportive interventions can improve some aspects of caregiver satisfaction or self-reported sense of mastery, but few have shown actual improvements in problem-solving abilities, pain management, or other more objective measures of reduced caregiver burden. This body of work suffers from the failure to use standardized outcome measures, limited randomization of patients and caregivers to intervention groups, lack of longitudinal designs that would allow for measurement of longer-term effects, and analysis that fails to control for selective attrition. Nevertheless, the key role caregivers play in delivering essential social support and providing hands-on health care and logistical support to patients clearly points to the need for oncology providers to assess caregivers’ capabilities and stresses and work jointly with them and patients to identify and secure resources likely to be helpful in the caregiving role. As more research on support for caregivers is conducted, clinicians will have better insights into how best to provide such support.
Legal protections and services Help in obtaining protections and rights such as those afforded by the Americans with Disabilities Act, the Family and Medical Leave Act, and the Individuals with Disabilities Education Act can help prevent or ameliorate disruptions in family, school, and work life. Legal instruments such as power of attorney, legal guardianship for minors, mechanisms for disposition of assets, and legal representation in other matters are also important (Fleishman et al., 2006). Although legal service is another area in which there is scarce research on effectiveness, the New York Legal Assistance Group, a nonprofit organization offering free civil legal services to poor and near-poor individuals and families living in New York City, examined the impact of legal services on the lives of 51 of its clients with cancer.9 In response to a survey, these clients reported that receipt of legal services reduced their worries (83 percent), improved their financial situation (51 percent), positively affected their family and loved ones (33 percent), helped them follow their treatment regimen (23 percent), and enabled them to keep medical appointments (22 percent) (Retkin et al., 2007).
Help in Managing Financial Demands and Insurance
As described in Chapter 1, cancer imposes substantial financial burdens. A number of services are aimed at relieving these burdens, including financial planning or counseling, insurance counseling (e.g., health, disability), other benefits eligibility assessment/counseling (e.g., Supplemental Security Income, Social Security Disability Income), help in managing day-to-day financial activities such as bill paying, and sometimes monetary awards. Once again, research on the effects of these services is limited, but nonprofit organizations such as the American Cancer Society and CancerCare report that help with financial and insurance problems is a frequently needed and provided service. The New York Legal Assistance Group also reports helping cancer patients arrange debt repayment with their creditors; secure benefits from federal financial assistance programs such as food stamps, Social Security Disability Income, Supplemental Security Income, and long-or short-term disability programs; and secure other insurance benefits. Clients with cancer who received these financial services cited significantly improved financial circumstances, reporting, for example, that receipt of these services “made me able to live with a roof over my head and food to eat” (Retkin et al., 2007:7).
READY AVAILABILITY OF KEY SERVICES
As described in Chapter 1, patients vary in the extent to which they need the psychosocial health services described in this chapter. Given the evidence described in Chapter 2, failing to address these needs can adversely affect the health and health care of patients. Thus all oncology providers should identify patients with psychosocial needs and take steps to ensure that they receive the services necessary to address them.
Psychosocial health services are provided by multiple sectors of the U.S. economy through different types of providers (see Table 6-3, Some Availability of Psychosocial Services in Health and Human Services Sectors and from Informal Supports, in Chapter 6). Depending on each patient’s situation (e.g., geographic location, financial resources, health insurance status), some services are more accessible than others. For example, a shortage of mental health professionals with specific types of training (e.g., in child mental health) is a long-recognized problem in certain parts of the country, especially in rural and other geographically remote areas (IOM, 2006). However, the committee found the ready and nationwide availability of a number of key psychosocial health services to patients with cancer. Table 3-2 highlights information services and Table 3-3 other key psychosocial health services available nationwide at no cost to patients. Information such as this may be helpful to cancer care providers as they seek to provide their patients with information on sources of psychosocial health services. The next two chapters address how such providers can identify patients with psychosocial problems and help them receive the psychosocial health services they need.
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In child and adolescent therapy alone, for example, it is conservatively estimated that, even if one omits various combinations of treatments and variants of treatments that are not substantially different, there are more than 550 psychotherapies in use (Kazdin, 2000).
For example, this report does not address the unique clinical treatment issues of individuals with mental illnesses such as schizophrenia and psychotic disorders. However, the access to specialized mental health services described in Chapter 6 pertains to cancer patients with all types of mental health problems and illness, not just those described in this chapter. The reader is directed to a recent IOM report, Improving the Quality of Health Care for Mental and Substance-Use Conditions (IOM, 2006), which addresses approaches to coordinating mental health care with other medical care for all types of mental health conditions.
And not all patients want to participate in a support group.
Less research has been conducted on psychological interventions with children with cancer, in part because of their small numbers and evidence showing low levels of psychopathology in children as a group (Patenaude and Kupst, 2005; Pai et al., 2006).
Stanford’s model also is a required component of the Administration on Aging’s public–private collaborative grant program for states and local communities, Empowering Older People to Take More Control of Their Health Through Evidence-Based Prevention Programs.
Although many individuals with cancer have participated in the Stanford model of illness self-management through 700 “master trainers” in the United States and worldwide, the University of Louisiana Brown Cancer Center also held two workshops targeting cancer survivors that followed the Stanford model, and identified no areas needing modification for this group (Personal communication. Karen S. Newton, MPH, RD, Project Director, Chronic Illness Initiatives, University of Louisville Department of Family and Geriatric Medicine via Kate Lorig, RN, DrPH, Stanford Patient Education Research Center, September 5, 2006).
This is another example of the terminology problem discussed earlier in this chapter.
In contrast, more research evidence exists for the effectiveness of cognitive rehabilitation in individuals with cognitive impairment due to stroke and traumatic brain injury, which is more clearly mapped and better understood (see Cicerone et al., 2005, and Tate et al., 2006).
As of 2005, the New York Legal Assistance Group had provided legal services to more than 500 individuals with cancer (Fleishman et al., 2006).
National Academies Press (US), Washington (DC)
Institute of Medicine (US) Committee on Psychosocial Services to Cancer Patients/Families in a Community Setting; Adler NE, Page AEK, editors. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington (DC): National Academies Press (US); 2008. 3, Psychosocial Health Services.