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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs Appendix B Study Methods A variety of different strategies were used to carry out this study. Although not explicitly stated in the committee’s multifocal scope of work (found at the end of this appendix), the initial, linchpin activity was to define “psychosocial services.” The committee’s next logical activity was to operationalize this definition by identifying and defining the specific services it encompasses. The importance of this effort was heightened by direction from the National Institutes of Health (NIH) that the identification of models for the delivery of psychosocial services (Task 4 in the scope of work) was of paramount interest. To identify models of service delivery, the committee needed to delineate clearly just what services were to be delivered. Third, underlying the identification of psychosocial services and service delivery models was the committee’s commitment to identifying effective services and delivery models—those that had empirical evidence to support their ability to bring about positive change in individuals’ health care and health. The methods the committee used to undertake these three activities, as well as the tasks specified in the study’s scope of work, are discussed below. DEFINING PSYCHOSOCIAL SERVICES The committee searched for and located a limited number of definitions of psychosocial services. These definitions and their varying conceptual underpinnings are presented below.
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs Review of Existing Definitions “Psychosocial support” is identified by multiple parties as an essential component of quality cancer care (American Psychosocial Oncology Society, undated; National Breast Cancer Centre and National Cancer Control Initiative, 2003; IOM and NRC, 2004; President’s Cancer Panel, 2004; Association of Community Cancer Centers, 2006). However, there does not appear to be a commonly shared definition or listing of the various types of psychosocial services or a conceptual framework underpinning various definitions. Psychosocial services literally could be interpreted as referring to all psychological (mental health, emotional issues) services, as well as all services needed to address adverse social conditions. However, several expert bodies explicitly identify several other dimensions of psychosocial needs/services. The Association of Community Cancer Centers (2006:25), for example, defines psychosocial oncology care (which it also refers to as “psychosocial distress management services”) as services “to address the psychological, emotional, spiritual, social, and practical aspects that patients and their families have as a consequence of cancer and its treatment [emphasis added].” The Institute of Medicine (IOM) report Improving Palliative Care for Cancer (IOM and NRC, 2001) also identifies spiritual, religious, and existential distress separately from psychosocial distress. Are spiritual, religious, and existential concerns mutually exclusive and conceptually different? Are “psychological” and “emotional” concerns? Should they and “practical concerns” be included separately as components of a definition of psychosocial services? The IOM report Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 2004:70–71) presents “brief descriptions of the full range of psychosocial services [emphasis added].” However, it then discusses only “basic social and emotional support,” which “focuses on adjustment to diagnosis, apprehension regarding treatment, and existential concerns,” and psychoeducational approaches; cognitive and behavioral interventions, such as guided imagery, biofeedback, progressive muscle relaxation, and meditation; psychotherapeutic interventions, such as group therapy and counseling; pharmacological interventions; and complementary therapies, such as yoga and massage. It contains no discussion of social services addressing such practical concerns as transportation, child care, financial problems, work, or educational problems. Australia’s Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer define a psychosocial intervention as “treatment that is intended to address psychological, social, and some spiritual needs [emphasis added]” but does not clarify which spiritual issues are and are not to
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs be addressed (National Breast Cancer Centre and National Cancer Control Initiative, 2003:212). The recent IOM publication From Cancer Patient to Cancer Survivor: Lost in Transition includes “behavioral” issues in its definition of psychosocial services, that is services relating to the psychological, social, behavioral, and spiritual aspects of cancer, including education, prevention and treatment of problems in these areas. (IOM and NRC, 2006:482) The report addresses the need for behavioral interventions in such areas as smoking cessation, physical activity, nutrition and diet, and weight management. It also reviews the use of complementary and alternative medicine. The inclusion of behavioral issues is consistent with the scope of issues addressed by the American Psychosocial Oncology Society (APOS) in its mission statement: to “advance the science and practice of psychosocial care for people with cancer … in the areas of psychological, social, behavioral, and spiritual aspects of cancer” (American Psychosocial Oncology Society, undated). The inclusion of these issues is also consistent with the American Psychological Association’s definition of psychology: Psychology is the study of the mind and behavior. The discipline embraces all aspects of the human experience … “the understanding of behavior” is the enterprise of psychologists. (American Psychological Association, 2006) However, this definition is not wholly consistent with a definition of behavioral medicine that conversely subsumes psychosocial issues: Behavioral Medicine is the interdisciplinary field concerned with the development and integration of behavioral, psychosocial, and biomedical science knowledge and techniques relevant to the understanding of health and illness, and the application of this knowledge and these techniques to prevention, diagnosis, treatment and rehabilitation. (SBM, 2006:1) NIH notes that “there has been a lack of definitional clarity to several concepts and terms such as palliative care, end of life care, and hospice care” (NIH, 2004:3). In its review of definitions of psychosocial services, the committee also found a similar need for better definitional and conceptual clarity regarding “psychosocial services.” Conceptual Framework The committee sought to use a definition that had a conceptual and empirical basis. Conceptual frameworks considered included (1) the list of “psychosocial and environmental problems” contained in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs Disorders (DSM-IV-TR), (2) the National Comprehensive Cancer Network’s (NCCN) Clinical Practice Guidelines for Distress Management, (3) illness self-management approaches, (4) conceptual models of health-related quality of life, and (5) other frameworks. Frameworks DSM-IV-TR list of psychosocial and environmental problems DSM-IV-TR, used by clinicians to diagnose and plan treatment for both mental disorders and less serious mental health problems, includes assessment of psychosocial and environmental problems that may affect diagnosis, treatment, and prognosis as one of five dimensions (axes)1 to be evaluated when planning treatment. It categorizes Psychosocial and Environmental Problems in Axis IV as Problems with primary support group—e.g., death of a family member; health problems or discord in family; separation, divorce, estrangement; abuse or neglect. Problems related to the social environment—e.g., death or loss of a friend, inadequate social support, living alone, discrimination. Educational problems—e.g., literacy, school achievement, disruptions to education. Occupational problems—e.g., unemployment, potential job loss, difficult work conditions. Housing problems—e.g., homeless, unsafe or inadequate housing. Economic problems—e.g., inadequate income for routine life needs, difficulty paying for health care. Problems with access to health care—e.g., inadequate health insurance, transportation problems, geographic hardship accessing care. Problems related to interactions with the legal system—e.g., arrest or fear of arrest, use of illegal substances, incarceration. Other psychosocial and environmental problems—e.g., no telephone, exposure to natural disaster or violence, unavailability of social service agencies. The American Psychiatric Association describes this categorization and DSM-IV-TR’s multiaxial assessment approach as a “format for organizing and communicating clinical information, for capturing the complexity 1 The other four axes are Axis I, Clinical Disorders and Other Conditions that may be a focus of clinical psychiatric care; Axis II, Personality Disorders and Mental Retardation; Axis III, General Medical Conditions; and AXIS V, Global Functioning.
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs of clinical situations, and for describing the heterogeneity of individuals presenting with the same diagnosis. In addition, the multiaxial system promotes the application of the biopsychosocial model in clinical, educational, and research settings” (APA, 2000:27). National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines for Distress Management The IOM report Meeting Psychosocial Needs of Women with Breast Cancer (IOM and NRC, 2004) indicates that psychosocial services are those services intended to alleviate “psychosocial distress.” It defines psychosocial distress in cancer as “an unpleasant emotional experience that may be psychological, social, or spiritual in nature [emphasis added]” (p. 2) or “an unpleasant experience of an emotional, psychological, social or spiritual nature that interferes with the ability to cope with cancer treatment” (p. 12). It notes that such distress exists along a continuum ranging from the normal and often expected feelings of fear, worry, sadness, and vulnerability related to cancer and its treatment to more severe and disabling symptoms, such as severe anxiety or major depression. The definition of distress in Meeting Psychosocial Needs of Women with Breast Cancer is based on that contained in the NCCN Clinical Practice Guidelines for Distress Management (NCCN, 2006). These consensusbased guidelines, developed by 20 of the nation’s comprehensive cancer centers, use the word “distress” “to characterize the psychosocial aspects of patient care” (p. MS-2) because “it is more acceptable and less stigmatizing than ‘psychiatric,’ ‘psychosocial,’ or ‘emotional’; sounds ‘normal’ and less embarrassing; [and] can be defined and measured by self report” (p. DIS-1). These guidelines define such distress as “a multifactorial, unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment” [emphasis added] (p. DIS-2). Thus, the NCCN definition distinguishes among at least three sources of psychosocial distress: (1) psychological problems (cognitive, behavioral, and emotional), (2) social problems, and (3) spiritual problems. However, NCCN’s screening tool to detect significant levels of patient distress additionally addresses other sources of distress, including practical problems, such as transportation and child care, and physical problems, such as pain, difficulty breathing, fever, changes in urination, and dry/itchy skin. Illness self-management programs A variety of programs and interventions have been developed to assist individuals in managing a wide range of chronic illnesses. These programs are often referred to as “illness self-management” programs. Self-management is defined as an individual’s
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs “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). This term is associated most often with conditions such as diabetes mellitus whose severity and progression can be significantly affected by lifestyle changes. There is now considerable evidence for many (noncancer) chronic diseases that interventions directed at improving patients’ knowledge, skills, and confidence in managing their illness improves outcomes (Chodosh et al., 2005). One particular illness self-management approach that has an explicitly stated conceptual model and has been empirically validated for a variety of chronic illnesses (e.g., heart disease, lung disease, stroke, and arthritis) is that of Stanford University (Stanford University School of Medicine, 2006). The Stanford model addresses the day-to-day tasks and skills necessary to live successfully with a chronic illness, including behavioral health practices, social and interpersonal role functioning, and emotional management (Lorig and Holman, 2003). These tasks and skills pertain, for example, to monitoring illness symptoms; using medications appropriately; practicing behaviors conducive to good health in such areas as nutrition, sleep, and exercise; employing stress reduction practices and managing negative emotions; using community resources appropriately; communicating effectively with health care providers; and practicing health-related problem solving and decision making. This model has been shown to reduce pain and disability, lessen fatigue, decrease needed visits to physicians and emergency rooms, and increase self-reported energy and health (Bodenheimer et al., 2000; Lorig et al., 2001; Lorig and Holman, 2003). Illness self-management also is one of the essential components of the Chronic Care Model, which can help inform the development of a conceptual framework. Health-related quality of life Conceptual models developed to describe the variety of effects cancer has on psychological health, functional abilities, family relationships and other social roles, and important aspects of life also underpin numerous instruments designed to measure health-related quality of life (HRQOL). Examples of these instruments include “generic” instruments used to assess problems for any type of illness, such as the Short Form Health Survey (SF) instruments of the Medical Outcomes Study, and instruments used specifically to assess problems occurring in patients with cancer. These latter instruments (developed for research purposes) include, for example, the Cancer Rehabilitation Evaluation System, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, Functional Assessment of Cancer Therapy (FACT) instruments, and the Quality of Life Breast Cancer Instrument (IOM and NRC, 2004). However, the committee that authored the IOM report From Cancer Patient to Cancer Survivor: Lost In Transition found no agreed-
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs upon conceptual model for HRQOL, although these instruments frequently address physical, psychological, social, and spiritual domains. Need for Face Validity The committee sought a definition that, in addition to being conceptually sound, would have face validity to cancer patients and oncology practitioners. In numerous reports on cancer care reviewed by the committee, cancer patients, their families and informal caretakers, health care providers, and researchers identify many nonbiological adverse consequences of cancer and its treatment, and describe cancer survivors’ need for various types of nonmedical assistance in addressing these consequences. These problems and needs were used to inform the committee’s development of a definition of psychosocial services for the present study. These problems and needs, discussed in Chapter 1 of this report, include emotional and mental health problems, developmental problems, cognitive problems, problems in performing activities of daily living, problems in fulfilling family and social roles and relationships, problems in employment, financial and health insurance issues, spiritual and existential needs, problems in adopting and maintaining good health behaviors, and other needs. Definition The committee considered and deliberated on the above varying definitions and conceptual frameworks at and subsequent to its first meeting. The committee acknowledged that there is a vast array of adverse psychological and social events in people’s lives, but that not all of these events may have implications for health or health care. For example, engagement in illegal activity is a serious social problem but may not have implications for patients’ health care (unless, for example, they are incarcerated or suffer emotional distress as a result of their activity). Many people also receive psychosocial services for reasons unrelated (or less directly related) to health care. For example, children in the juvenile justice and child welfare systems receive psychosocial services partly in an effort to help them avoid prosecution and the repetition of illegal behaviors and to strengthen their family. The committee determined that, to be understandable across multiple health and human services sectors, its definition should refer to the subset of psychosocial services that can help improve health and health care. Accordingly, the committee adopted the following as its definition: Psychosocial health services are psychological and social services and interventions that enable patients, their families, and health care providers to
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs optimize biomedical health care and to manage the psychological/behavioral and social aspects of illness and its consequences so as to promote better health. For the reasons given above, this definition uses the wording “psychosocial health services” to make clear that it refers to services that “enable patients, their families, and health care providers to optimize biomedical health care and to manage the psychological, social, and behavioral aspects of illness” as opposed to those psychosocial services that might enable individuals to meet other goals, such as strengthening family functioning or avoiding incarceration. The committee also decided to adopt the wording “psychological/behavioral” because of the lack of consistent usage of “psychological” and “behavioral” in the scientific community; for example, the American Psychological Association subsumes behavior under psychology, while others use “behavioral” as the umbrella term. The committee’s definition also includes but distinguishes between psychosocial services (i.e., activities or tangible goods directly received by and benefiting the patient or family) and psychosocial interventions (activities that enable the provision of those services, such as needs assessment, referral, or care coordination). IDENTIFYING EFFECTIVE PSYCHOSOCIAL HEALTH SERVICES AND MODELS OF SERVICE DELIVERY Effective Psychosocial Health Services The committee identified effective psychosocial health services by first identifying the psychosocial health needs experienced by cancer patients. Psychosocial needs were identified by examining peer-reviewed periodical literature and prior authoritative reports addressing this topic, including the following: DHHS (Department of Health and Human Services). 2003. Achieving the promise: Transforming mental health care in America. New Freedom Commission on Mental Health Final Report. DHHS Publication No. SMA-03-3832. Rockville, MD: DHHS. Holland, J. C., B. Andersen, M. Booth-Jones, W. Breitbart, M. Dabrowski, M. Dudley, S. Fleishman, P. Fobair, G. Foley, C. Fulcher, D. Greenberg, C. Greiner, G. Handzo, J. Herman, P. Jacobsen, S. Knight, M. Levy, R. McAllister-Black. M. Riba, J. Schuster, N. Slatkin, A. Valentive, J. Weinberg, and M. Zevon. 2003. NCCN distress management clinical practice guidelines in oncology. Journal of the National Comprehensive Cancer Network 1:344–374.
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs IOM (Institute of Medicine). 1999. Ensuring quality cancer care. Edited by M. Hewitt and J. V. Simone. Washington, DC: National Academy Press. IOM. 2000. Bridging disciplines in the brain, behavioral, and clinical sciences. Edited by T. C. Pellmar and L. Eisenberg. Washington, DC: National Academy Press. IOM. 2006. Improving the quality of health care for mental and substance-use conditions. Washington, DC: The National Academies Press. IOM and NRC (National Research Council). 2000. Enhancing data systems to improve the quality of cancer care. Washington, DC: National Academy Press. IOM and NRC. 2001. Interpreting the volume-outcome relationship in the context of cancer care. Washington, DC: National Academy Press. IOM and NRC. 2001. Improving palliative care for cancer. Edited by K. M. Foley and H. Gelband. Washington, DC: National Academy Press. IOM and NRC. 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. IOM and NRC. 2003. Childhood cancer survivorship: Improving care and quality of life. Edited by M. Hewitt, S. L. Weiner, and J. V. Simone. Washington, DC: The National Academies Press. IOM and NRC. 2004. Meeting psychosocial needs of women with breast cancer. Edited by M. Hewitt, R. Herdman, and J. C. Holland. Washington, DC: The National Academies Press. IOM and NRC. 2005. Assessing the quality of cancer care: An approach to measurement in Georgia. Edited by J. Eden and J. V. Simone. Washington, DC: The National Academies Press. IOM and NRC. 2006. From cancer patient to cancer survivor: Lost in transition. Edited by M. Hewitt, S. Greenfield, and E. Stovall. Washington, DC: The National Academies Press. National Breast Cancer Centre and National Cancer Control Initiative. 2003. Clinical practice guidelines for the psychosocial care of adults with cancer. http://www.nhmrc.gov.au/publications/synopses/_files/cp90.pdf. NIH (National Institutes of Health). 2004. Symptom management in cancer: Pain, depression and fatigue. The National Institutes of Health State-of-the-Science Conference. Monographs Journal of the National Cancer Institute 32. NIH (National Institutes of Health). 2004. Statement on improving end-of-life care. Paper read at National Institutes of Health State-of-the-Science Conference, December 6–8, 2004, Bethesda, MD.
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs President’s Cancer Panel. 2004. Living beyond cancer: Finding a new balance. President’s Cancer Panel 2003–2004 annual report. Bethesda, MD: National Cancer Institute, National Institutes of Health, U.S. Department of Health and Human Services. From this literature, the committee was able to distinguish among the psychosocial health problems encountered by cancer patients and their families. These include problems in (1) coping with emotions accompanying disease and treatment; (2) comprehensively managing their illness; (3) changing specific behaviors to minimize the impact of disease; (4) obtaining material and logistical resources, such as transportation, needed to manage the illness; (5) managing disruptions in work, school, and family life; and (6) managing financial burdens. The committee initially identified 38 services that could potentially be effective in addressing these problems. The committee then undertook systematic searches for evidence of the effectiveness of these services and reviews of this evidence. The large number of psychosocial services in question and the committee’s desire to be thorough in its search for evidence led to very large sets of evidence to review. To make the evidence review manageable, the committee used a serial search strategy (illustrated in Table B-1) that gave priority to both (1) reviewing interventions that have been specifically tested in populations of cancer survivors, and (2) making use of existing systematic reviews, where available. Each search first aimed to identify meta-analyses and systematic reviews pertaining to the effectiveness of the intervention when provided to cancer survivors (Strategy A). If this effort generated sufficient information for reviewers’ assessment of evidence, the search for evidence ended, and reviewers assessed the evidence obtained. If Strategy A provided no or insufficient evidence, the search was expanded to Strategy B, which additionally sought evidence from individual controlled and observational studies with cancer survivors, and meta-analyses and systematic reviews of the effectiveness of the service in populations with conditions other than cancer. Single studies of the service in populations with conditions other than cancer were given lowest priority. The search parameters included English-language ar- TABLE B-1 Serial Search Strategies Type of Study Intervention Tested in Cancer Survivors Intervention Tested in Populations with Other Conditions Meta-analyses and Systematic Reviews Strategy A Strategy B Single Controlled or Observational Studies Strategy B Strategy C
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs ticles published from 1980 to 2007 in Medline, PsychInfo, CINAHL, and EMBASE databases. When known, evidence from books, book chapters, and other governmental or nongovernmental evidence reports not indexed in Medline, PsychInfo, CINAHL, and EMBASE was included. Each evidence review involved two reviewers who examined individual studies and the evidence in the aggregate with the aid of standard evidence reporting and scoring forms. Each review team made a determination of the extent to which the evidence showed the intervention to be effective in addressing the identified need. Search terms for each of the 38 candidate services are available from IOM study staff. When undertaking this review, the committee again encountered a lack of clarity in the terminology used to refer to psychosocial services (discussed above for psychosocial services in the aggregate and in Chapter 3 with respect to individual services). The absence of some definitions, other overlapping definitions and constructs, and the absence of evidence for some services led the committee to “collapse” its list of psychosocial services to the final list of 15 listed in Table B-2. The findings of the committee’s evidence reviews are included in Chapter 3. The committee hopes that the development of a taxonomy and nomenclature for psychosocial health services and the use of stronger research methods will in the future enable more efficient and effective identification, retrieval, and analyses of evidence. The committee is concerned that the absence of a controlled vocabulary for psychosocial health services may have led to inadvertent omission of some relevant evidence in its analyses of the effectiveness of individual psychosocial health services. Effective Models of Service Delivery The committee defined the term “models”—as used in the sponsor’s task statement—to mean interventions that have been found effective in delivering psychosocial health services to patients with cancer or other serious chronic illnesses in a community setting. Interventions should (1) have been used to deliver psychosocial health services consistent with the committee’s definition, and (2) have been evaluated and found effective in improving patient outcomes. Identified outcomes of interest included (but were not necessarily limited to) the following: Increased survival Functional status—improving function or preventing or slowing decline Decreased comorbidity (e.g., depression)
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs ous recommendations were not implemented. The committee notes that problems with the successful dissemination and adoption of many types of innovations and guidelines for care are widespread in health care, as well as in other industries. A recent systematic review of the literature revealed multiple factors associated with successful implementation (see Box B-1), whose absence likely hinders the uptake of recommendations. The commit- BOX B-1 Key Factors Associated with Successful Dissemination and Adoption of Innovations Characteristics of the Innovation Innovation more likely to be adopted if it Offers unambiguous advantages in effectiveness or cost-effectiveness. Is compatible with adopters’ values, norms, needs. Is simple to implement. Can be experimented with on a trial basis. Has benefits that are easily observed. Can be adapted, refined, modified for adopter’s needs. Is low risk. Is relevant to adopter’s current work. Is accompanied by easily available or provided knowledge required for its use. Sources of Communication and Influence Uptake of innovation influenced by Structure and quality of social and communication networks. Similarity of sources of information to targeted adopters, e.g., in terms of socioeconomic, educational, professional, and cultural backgrounds. Use of opinion leaders, champions, and change agents. External Influences Uptake of innovation influenced by Nature of an organization’s relationships with other organizations. Nature of an organization’s participation in formal dissemination and uptake initiatives. Policy mandates. Linkages Among the Components Innovation more likely to be adopted if there are Formal linkages between developers and users early in development. Effective relationships between any designated “change agents” and targeted adopters.
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs tee took to heart the statement in its scope of work that “the committee will place greater priority on the depth of the analyses and recommendations as opposed to a broader array of less detailed analyses and recommendations” and determined that analysis of the multiple reasons why each recommendation failed to be implemented was not likely to be a fruitful undertaking. The committee therefore did not make determinations about why recom- Characteristics of Individual Adopters Uptake of innovation influenced by individual’s General cognitive and psychological traits conducive to trying innovations (e.g., tolerance of ambiguity, intellectual ability, learning style). Context-specific psychological characteristics; e.g., motivation and ability to use the intervention in the given context. Finding the intervention personally relevant. Structural and Cultural Characteristics of Potential Organizational Adopters Innovation more likely to be adopted if organization Is large, mature, functionally differentiated, and specialized; has slack in resources; and has decentralized decision making. Can identify, capture, interpret, share, and integrate new knowledge. Is receptive to change through strong leadership, clear strategic vision, good management and key staff, and climate conducive to experimentation and risk taking. Has effective data systems. Is “ready” for change because of difficulties in current situation, fit between organization and innovation, anticipated benefits, internal support and advocacy, available time and resources for change, and capacity to evaluate innovation’s implementation. The Uptake Process Innovation more likely to be adopted with Flexible organizational structure that supports decentralized decision making. Leadership and management support. Personnel motivation, capacity, and competence. Funding. Internal communication and networks. Feedback. Adaptation and reinvention. SOURCE: Greenhalgh et al., 2004, as presented in IOM, 2006.
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs mendations made in previous reports were not implemented, but calls attention to the findings contained in Box B-1. The committee used these evidence-based factors in successful uptake to shape its recommendations with respect to psychosocial health care and to guide its dissemination plan and early dissemination activities, and urges others to take these factors into account in planning other dissemination and uptake activities. The committee was convened by the IOM in May 2006. It gathered evidence and conducted its analyses between May 2006 and May 2007. At the five meetings it held during this period, the committee collected and reviewed evidence from the sources described above. The committee also relied on the efforts of several experts who prepared commissioned papers providing the committee with in-depth reviews of two key issues: “Effects of Distressed Psychological States on Adherence and Health Behavior Change: Cognitive, Motivational, and Social Factors” by M. Robin DiMatteo, Kelly B. Haskard, and Summer L. Williams, all of the University of California, Riverside; and “Stress and Disease” by Sheldon Cohen and Denise Janicki-Deverts, both of Carnegie Mellon University. The committee’s draft report containing its recommendations was completed and sent for external review in July 2007. The report was finalized in September 2007. PSYCHOSOCIAL SERVICES TO CANCER PATIENTS/FAMILIES IN A COMMUNITY SETTING: SCOPE OF WORK Scope The Institute of Medicine will conduct a study of the delivery of the diverse (i.e., not limited to mental health) psychosocial services needed by cancer patients and their families in community settings. The study will produce a report that includes a description of how this broad array of services is provided; existing barriers to access of such care; an analysis of the capacity of the current mental health and oncology provider system to deliver such care, and the resources needed to deliver such care nationwide; available training programs for professionals providing psychosocial and mental health services; recommendations to address these issues; and an “action plan” that focuses, in as much detail as possible, on how to overcome the already well known barriers to cancer survivors’ receiving needed psychosocial service.
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs Methods The methods (including data collection and analysis) used to undertake the scope of work will be developed through the committee convened by the IOM. The committee will place greater priority on the depth of the analyses and recommendations as opposed to a broader array of less detailed analyses and recommendations. End-of-life care, is of lesser priority for this study, as it has received other attention in recent IOM reports, and includes additional issues that are beyond the resources of this study. A workplan will be developed by the committee at its first meeting. Study Process Task 1 Review previous IOM and other report recommendations on this issue, including AHRQ evidence-based practice reports. DHHS (Department of Health and Human Services). 2003. Achieving the promise: Transforming mental health care in America. New Freedom Commission on Mental Health Final Report. DHHS Publication No. SMA-03-3832. Rockville, MD: DHHS. Holland, J. C., B. Andersen, M. Booth-Jones, et al. NCCN distress management clinical practice guidelines in oncology. Journal of the National Comprehensive Cancer Network 1:344–374. IOM (Institute of Medicine). 2000. Bridging disciplines in the brain, behavioral, and clinical sciences. Edited by T. C. Pellmar and L. Eisenberg. Washington, DC: National Academy Press. IOM. 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. IOM and NRC (National Research Council). 2001. Improving palliative care for cancer. Edited by K. M. Foley and H. Gelband. Washington, DC: National Academy Press. IOM and NRC. 2003. Childhood cancer survivorship: Improving care and quality of life. Edited by M. Hewitt, S. L. Weiner, and J. V. Simone. Washington, DC: The National Academies Press. IOM and NRC. 2004. Meeting psychosocial needs of women with breast cancer. Edited by M. Hewitt, R. Herdman, and J. Holland. Washington, DC: The National Academies Press. National Breast Cancer Centre and National Cancer Control Initiative. 2003. Australian clinical practice guidelines for the
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs psychosocial care of adults with cancer. http://www.nhmrc.gov.au/publications/cphome.htm. The National Institutes of Health (NIH) State-of-the-Science Conference on Symptom Management in Cancer: Pain, Depression and Fatigue. Monographs Journal of the National Cancer Institute, No. 32, 2004 (especially the Panel’s summary findings, pp. 9–13). NIH State-of-the-science conference on improving end-of-life care, December 6–8, 2004. http://consensus.nih.gov/ta/024/024EndOfLifepostconfINTRO.htm. Other mental health reports, e.g., Interpreting the volume-outcome relationship in the context of cancer care (IOM, 2001). Enhancing data systems to improve the quality of cancer care (IOM, 2000). Assessing the quality of cancer care: An approach to measurement in Georgia (IOM, 2005). Task 2 Through interviews and testimony to the committee, determine why the recommendations contained in prior reports were not implemented, and possible ways to address barriers to care. Interviews and testimony will be sought, for example, from cancer survivors; mental health patients with chronic disease; family members; managed care organizations, Centers for Medicare & Medicaid Services; spiritual leaders/clergy; employers; specialty provider groups such as the American College of Surgeons; health care payers/insurers; advocates (cancer and mental health); peer outreach agencies; community delivery agencies; state health commissioners; and oncology providers. Interviews and testimony to the Committee about why recommendations contained in the prior reports were not implemented will be secured both prior to the first meeting and during the time period encompassed by the first three committee meetings. Task 3 Using case histories, key informant studies of providers and patients, or other means, document the types of services needed/provided availability and use who is using services and how they access them what they are told/given as condition evolves (flow of care) provider capacity how services are paid for in various community settings A strategy for implementing this task will be developed by the Committee
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs at its first meeting. Some of this information will be available from published health services research. However, the committee will need to discuss the best methods to use to attain reliable and generalizable information to answer others of these questions. For example, a large, nationally representative survey would be prohibitively expensive; however, focus groups typically do not provide generalizable information. The committee will address study methods and data sources at its first meeting. Task 4 Identify and characterize diverse models of psychosocial care for patients and families and the extent of evidence for their success (including models from other chronic diseases, noting parallels to cancer in report), including models from other than major, highly resourced centers. These models will be used to analyze how different barriers to care are addressed, or fail to be addressed. Models will be selected with attention to stage/course of disease economic disparities population community developmental age of survivor The committee will identify models of psychosocial care to be analyzed in its first two meetings. The committee will review the evidence about these models at the later half of its five meetings. Sources looked to for models will include, for example: Sloan Kettering; Mayo Clinic, Kaiser Permanente; HRSA; VA System, Indian Health Service; CCOPS; Moffitt Cancer Center, primary care; and SAMHSA’s National Registry of Effective Programs and Practices (NREPP). The committee also will include in its review community service entities, such as CancerCare, Inc., in New York City and larger philanthropic agencies (e.g., the Wellness Community, Gilda’s Club) that provide an array of psychosocial support services and also use diverse outreach models (e.g., one-on-one, group, educational, crisis management) and modalities (e.g., telephone, teleconference, and online/virtual access) to deliver these services. It will also look to generic models of care delivery that have been shown to be effective across multiple diagnoses, such as the Chronic Care Model, Illness–Self Management Programs, and disease management programs. Models for delivering care will address how to address the broad array of factors that influence access to such services such as place of residence (rural versus urban), ethnic and cultural differences, and literacy and language barriers. However, given the complexity of this undertaking, it may not be possible to thoroughly explore diversity/health disparity issues. Especially in looking at successful models, the sponsor is seeking more general
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs models to promote, with the understanding that some of these may need be modified to reach underserved communities. Task 5 Analyze reimbursement issues and develop recommendations for change, in part, by a literature review on reimbursement for mental health services delivery and interview of payers (Medicare, Medicaid, and private insurers) to determine current policy and practices regarding reimbursement; and a determination of who is currently underwriting the array of psychosocial services required by cancer patients and families; e.g., service agencies, philanthropy, volunteerism, peer counseling, small service charges, etc. Task 6 Analyze workforce issues, including review literature on current capacity of psychosocial service delivery in community setting. develop estimates of overall capacity required in the community in order to meet need, via modeling or other methods, using existing health workforce data and prevalence data of psychosocial problems. assess expertise in various disciplines to deliver required services (e.g., psychiatry, psychology, social work, nursing, pastoral care, oncology). Task 7 Develop training recommendations, including Examine literature to identify best practice training programs aimed at improving access in the community. Contact professional associations for data on training of oncologists about mental health, on training of mental health specialists about chronic disease. Training recommendations should address stigma for both patients and providers; accreditation; questions on licensure board exams (medical, nurse, Social work) in addition to training programs; community care providers, i.e., psychosocial service providers (psychiatrists, psychologists, nurses, rehabilitation specialists, noncancer physicians, social workers, pastoral counselors) not affiliated with cancer treatment centers. The goal is to understand what training may be needed for people who neither work
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs in cancer clinics or centers nor routinely provide psychosocial services to survivors or their family members, but who might care for cancer patients/survivors/family members in the course of their work; and emerging opportunities (e.g., telemedicine training). Task 8 Review literature to identify gaps in knowledge, and develop an applied clinical research agenda about who needs services? what type of assessment should be provided? what type of services should be provided at various stages of disease course? who should deliver services? are these interventions effective? what kind of follow-up is needed? are they cost effective in terms of disease course, other health outcomes, employment, etc.? how are services paid for, including for family members? what are the emerging opportunities (e.g. technological; length of survival)? Include specific recommendations where appropriate (e.g., for multi-center trials of health service delivery). Task 9 Develop a dissemination and implementation plan for successful, replicable, demonstration models. Product The committee will produce a report that addresses the above topics and includes an action plan with policy objectives and recommendations for various stakeholders including federal agencies; successful, replicable, demonstration models of effective, accessible psychosocial service delivery in communities; and a plan for the evaluation of impact of the report by a third party—as a part of developing its recommendations, the committee will make recommendations to the sponsor about how the impact of the report could be evaluated.
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs Timeline This study will take place over 18 months. REFERENCES American Psychological Association. 2006. About APA. http://www.apa.org/about/ (accessed June 23, 2006). American Psychosocial Oncology Society. undated. APOS mission. http://www.apos-society.org/about/org/mission.aspx (accessed June 15, 2006). APA (American Psychiatric Association). 2000. Diagnostic and statistical manual of mental disorders, Text revision (DSM-IV-TR). 4th ed. Washington, DC: APA. Association of Community Cancer Centers. 2006. Cancer program guidelines. http://www.accc-cancer.org/PUBS/pubs_cpguidelines2006.pdf (accessed June 1, 2006). Barlow, J., C. Wright, J. Sheasby, A. Turner, and J. Hainsworth. 2002. Self-management approaches for people with chronic conditions: A review. Patient Education and Counseling 48(2):177–187. Bodenheimer, T., K. Lorig, H. Holman, and K. Grumbach. 2000. Patient self-management of chronic disease in primary care. Journal of the American Medical Association 288(19): 2469–2475. Chodosh, J., S. C. Morton, W. Mojica, M. Maglione, M. J. Suttorp, L. Hilton, S. Rhodes, and P. Shekelle. 2005. Meta-analysis: Chronic disease self-management programs for older adults. Annals of Internal Medicine 143(6):427–438. Greenhalgh, T., G. Robert, F. MacFarlane, P. Bate, and O. Kyriakidou. 2004. Diffusion of innovations in service organizations: Systematic review and recommendations. The Milbank Quarterly 82(4):581–629. IOM (Institute of Medicine). 2006. Improving the quality of health care for mental and substance-use conditions. Washington, DC: The National Academies Press. IOM and NRC (National Research Council). 2001. Improving palliative care for cancer. Edited by K. M. Foley and H. Gelband. Washington, DC: National Academy Press. IOM and NRC. 2004. Meeting psychosocial needs of women with breast cancer. Edited by M. Hewitt, R. Herdman, and J. Holland. Washington, DC: The National Academies Press. IOM and NRC. 2006. From cancer patient to cancer survivor: Lost in transition. M. Hewitt, S. Greenfield, and E. Stovall, eds. Washington, DC: The National Academies Press. Lorig, K., and H. Holman. 2003. Self-management education: History, definition, outcomes, and mechanisms. Annals of Behavioral Medicine 26(1):1–7. Lorig, K. R., P. Ritter, A. A. Stewart, D. Sobel, B. W. Brown, A. Bandura, V. M. Gonzalez, D. D. Laurent, and H. R. Holman. 2001. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Medical Care 39(11): 1217–1223. National Breast Cancer Centre and National Cancer Control Initiative. 2003. Clinical practice guidelines for the psychosocial care of adults with cancer. Camperdown, NSW, Australia: National Breast Cancer Centre. http://www.nbcc.org.au/bestpractice/resources/PCA131_clinicalpracticeguid.pdf (accessed on September 14, 2007). NCCN (National Comprehensive Cancer Network). 2006. Distress management—version 1.2007. http://www.nccn.org/professionals/physician_gls/PDF/distress.pdf (accessed September 14, 2007).
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Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs NIH (National Institutes of Health). 2004. Statement on improving end-of-life care. Paper read at National Institutes of Health State-of-the-Science Conference, December 6–8, 2004, Bethesda, MD. http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm (accessed September 14, 2007). President’s Cancer Panel. 2004. Living beyond cancer: Finding a new balance. President’s Cancer Panel 2003–2004 Annual Report. Bethesda, MD: National Cancer Institute, National Institutes of Health, U.S. Department of Health and Human Services. SBM (Society of Behavioral Medicine). 2006. Definition. http://www.sbm.org/about/definition.asp (accessed September 14, 2007). Stanford University School of Medicine. 2006. Stanford self-management programs. http://patienteducation.stanford.edu/programs/ (accessed June 25, 2006).
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