4
A Model for Delivering Psychosocial Health Services

CHAPTER SUMMARY

Many different providers of health services—some in oncology, some delivering health care for other complex health conditions—recognize that psychosocial problems can have both direct and indirect effects on health and have developed interventions to address them. Some of these interventions are derived from theoretical or conceptual frameworks; some are based on research findings; and some have undergone empirical testing. The best have all three characteristics. When viewed together, these interventions evidence common elements that point to a model for the effective delivery of psychosocial health services. The components of this model include (1) identifying patients with psychosocial health needs that are likely to affect their health or health care, and developing with patients appropriate plans for (2) linking patients to appropriate psychosocial health services, (3) supporting patients in managing their illness, (4) coordinating psychosocial with biomedical health care, and (5) following up on care delivery to monitor the effectiveness of services and determine whether any changes are needed. Effective patient–provider communication is central to all of these components.

EFFECTIVE DELIVERY OF PSYCHOSOCIAL HEALTH CARE

The committee conducted a search1 to identify empirically validated models of the effective delivery of psychosocial health services. This search

1

This search involved reviewing peer-reviewed literature, seeking recommendations from experts in the delivery of cancer and other complex health care (experts contacted are listed in Appendix B), and investigating models otherwise identified by the committee.



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4 A Model for Delivering Psychosocial Health Services CHAPTER SUMMARY Many different proiders of health serices—some in oncology, some deli- ering health care for other complex health conditions—recognize that psy- chosocial problems can hae both direct and indirect effects on health and hae deeloped interentions to address them. Some of these interentions are deried from theoretical or conceptual frameworks; some are based on research findings; and some hae undergone empirical testing. The best hae all three characteristics. When iewed together, these interentions eidence common elements that point to a model for the effectie deliery of psychosocial health serices. The components of this model include (1) identifying patients with psychosocial health needs that are likely to affect their health or health care, and deeloping with patients appropriate plans for (2) linking patients to appropriate psychosocial health serices, () supporting patients in managing their illness, () coordinating psycho- social with biomedical health care, and () following up on care deliery to monitor the effectieness of serices and determine whether any changes are needed. Effectie patient–proider communication is central to all of these components. EFFECTIVE DELIVERY OF PSYCHOSOCIAL HEALTH CARE The committee conducted a search1 to identify empirically validated models of the effective delivery of psychosocial health services. This search 1 This search involved reviewing peer-reviewed literature, seeking recommendations from experts in the delivery of cancer and other complex health care (experts contacted are listed in Appendix B), and investigating models otherwise identified by the committee. 1

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1 CANCER CARE FOR THE WHOLE PATIENT yielded a number of models tested and found to be effective in deliver- ing these services and improving health. These models are described in Annex 4-1 at the end of this chapter and are listed in Table 4-1, which highlights components common to many or all of them: (1) identifying patients with psychosocial health needs that are likely to affect their ability to receive health care and manage their illness, and developing with patients appropriate plans for (2) linking patients to appropriate psychosocial health services, (3) supporting them in managing their illness, (4) coordinating psychosocial with biomedical health care, and (5) following up on care delivery to monitor the effectiveness of services and determine whether any changes are needed. Table 4-1 also includes practice guidelines, produced through systematic reviews of evidence, that identify approaches for the effective delivery of psychosocial health services, along with the consen- sus-based guidelines for Distress Management developed by the National Comprehensive Cancer Network (NCCN)—an alliance of 21 leading U.S. cancer centers. The various ways in which these programs carry out some of these functions also are listed in the table and elaborated on in the text that follows. Evidence derived from the models listed in Table 4-1 (summarized in Annex 4-1) strongly suggests that a combination of actiities rather than any single activity by itself (e.g., screening, case management, illness self- management) is needed to deliver appropriate psychosocial health care effectively to individuals with complex health conditions. This conclusion also is supported by the findings of several systematic reviews of psycho- social care. For example, not surprisingly, screening by itself is less effective than screening with follow-up. The U.S. Preventive Services Task Force, for instance, recommends screening for depression in adults in clinical practices only when practices have systems in place to ensure effective follow-up treatment and ongoing monitoring. This recommendation reflects research finding that only small benefits result from screening by itself, but larger benefits when screening is accompanied by effective follow-up (U.S. Pre- ventive Services Task Force, 2002). Consistent with this finding, a review of studies of interventions to improve the management of depression in primary care settings found that those with the most multidimensional approaches (such as case management combined with clinician education and structured links to connect primary and specialty medical care) were most likely to achieve desired outcomes (Gilbody et al., 2003). Another systematic review of randomized controlled trials designed to improve the use of needed health and social services after hospital discharge found that interventions emphasizing follow-up on the results of a needs assessment showed more positive results than needs assessment alone (Richards and Coast, 2003). In this chapter, the committee recommends a unifying model for plan-

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TABLE -1 Models for Delivering Psychosocial Health Services and Their Common Components Common Componentsa Care Identification Planning Mechanisms to Mechanisms for of Patients with to Address Link Patients Support for Coordinating Psychosocial Those to Psychosocial Illness Self- Psychosocial and Follow-up on Care Model Health Needs Needs Health Services Management Biomedical Care Delivery Building Health Risk and Yes Care Yes Multidisciplinary team Outcome Systems for People eligibility managementb care measurement with Chronic screening Illnesses (Palmer and Pooled funding Somers, 2005) Needs assessment Chronic Care Model No Yes Linkage to Yes Clinical information Use of information (ICIC, 2007) community systems systems to resources accomplish this Team care Case management Planned or for complex cases structured follow- up visits Clinical Practice Screening for Yes Social work and No Coordination of Yes Guidelines distress referral services oncology team for Distress Management Needs assessment (NCCN, 2007a) 1 continued

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TABLE -1 Continued 1 Common Componentsa Care Identification Planning Mechanisms to Mechanisms for of Patients with to Address Link Patients Support for Coordinating Psychosocial Those to Psychosocial Illness Self- Psychosocial and Follow-up on Care Model Health Needs Needs Health Services Management Biomedical Care Delivery Clinical Practice Screening No Development of No Multidisciplinary team Yes Guidelines for the for anxiety/ referral pathways care Psychosocial Care of depression and networks Adults with Cancer Coordinator of care (National Breast Coordinator of designated by patient Cancer Centre and care designated by National Cancer patient Control Initiative, 2003) Collaborative Care Use of Yes Structured, formal Yes Case conferences Surveillance of Depression standardized arrangement of medication in Primary Care screening and for psychiatric Mental health use and patient (Katon, 2003) diagnostic tools consultation specialists located outcomes for depression within primary care sites Improving Needs assessment Yes Yes Identified Multiple strategies Yes Supportive and as part of including, e.g., Palliative Care for rehabilitation multidisciplinary teams, Adults with Cancer services information systems, (NICE, 2004) patient-held records

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Partners in Care Screening Treatment Yes Manualized Yes Yes (Wells et al., 2004) for probable plan patient depression formulated education and with activation Follow-up patient interventions assessment and tools Project IMPACT Structured Yes Case management Yes Multidisciplinary team Yes Collaborative Care assessment to care and team meetings Model (Unutzer confirm diagnosis Formal et al., 2002) arrangement Clinical information for psychiatry systems consultation Promoting Comprehensive Advance Varies by site Patient/family Varies by site Yes Excellence in End-of- psychosocial care education Life Care Program assessment planning (Byock et al., 2006) Three Component Screening for Yes Case management Yes Formal agreements Outcome Model (CM™) depression between primary measurement and (Anonymous, 2004, and diagnostic care providers and follow-up using 2006) assessment consulting psychiatrists standardized instruments aSometimes an intervention (such as use of a case manager) performs more than one function, such as linking individuals to needed service and coordinating their psychosocial and biomedical care. When a model clearly states that this is the case, or when it appears to be the case, an interven- tion is listed in more than one column. bCase management and care management are sometimes used interchangeably, although different program developers sometimes give a concep- tual basis for their particular terminology. In this chart, the wording of the referenced document is used and refers generally to the assignment of an individual (a case or care manager) who is responsible for linking an individual to needed services; coordination of some aspects of their care; and/or following up to assure the service delivery, service effectiveness, or to monitor changing patient needs or status. 1

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1 CANCER CARE FOR THE WHOLE PATIENT Effective Patient–Provider Communication Patient–Provider Provider Team Patient/Family Partnership Identification of Psychosocial Needs Development and Implementation of a Plan That: Supports patients by: • Providing personalized Links information Coordinates patient/family with • Identifying strategies to psychosocial and needed address needs biomedical care psychosocial • Providing emotional services support • Helping patients manage their illness and health Follow-up and Re-evaluation FIGURE -1 Model for the delivery of psychosocial health services. fig S-1 and 4-1 ning and delivering psychosocial health care for patients with cancer. This model is based on the evidence yielded by the models listed in Table 4-1, R01103 evidence suggesting added value from multiple components of effective care delivery, and evidence (presented below) supporting the contributions of Cancer Care many of these individual components to the effective provision of psychoso- cial health care. The committee’s model, illustrated in Figure 4-1, integrates the five common components identified above. Although these components individually are in some cases supported by research findings, in other cases there may not be strong evidence of their effectiveness as stand-alone in- terventions. Nonetheless, the committee recommends their inclusion based on their presence in the reviewed models and with the understanding that

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1 A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES a lack of research findings is not necessarily synonymous with ineffective- ness.2 We also note that effective patient–provider communication is central to the success of all five components of the model. The model is described in detail below. A UNIFYING MODEL FOR CARE DELIVERY Effective Patient–Provider Communication At the heart of the committee’s model is a well-functioning patient–pro- vider partnership, characterized, in large part, by effective communication. Communicating effectively means that patients are able to receive and un- derstand information about their illness and health care, and clearly express their needs for assistance and the values and personal resources that will shape the health care system’s response to these needs. Patients should be comfortable with asking questions of all their care providers and equally comfortable with responding to questions posed to them. They should be competent and at ease as a member of their own health care team, which will make decisions about the best strategy for addressing their illness. Patients with language barriers, cognitive deficits, or other impediments to communication should receive assistance in overcoming these barriers to effective communication. In many instances, members of the patient’s family also are involved in this communication. In pediatric cases, a family member may be the primary communicator and participant in planning care; with adults, some patients may also have limited capacity to communicate. Even when adult patients are able to communicate, as discussed in Chapters 1 and 2, family members are key caregivers, especially for older adults. Treatment planning and planning for managing the effects of illness requires communication with the patient’s caregivers as well as with the patient. When patients do not have the capacity to participate actively themselves, there needs to be an explicit substitute who is legally and psychologically able to act as the patient’s advocate. Care providers similarly should possess the communication skills neces- sary to be effective clinicians and supportive partners in care—a hallmark of high-quality health care (IOM, 2001) and health care professionals (IOM, 2003). These communication skills include establishing a good in- terpersonal relationship with the patient (Arora, 2003). Key aspects of 2 Forexample, an intervention may be so obviously helpful (e.g., providing transportation to help those without means to get to their appointments to do so) that it (rightly) has not been a priority for research (see Chapter 3), or a research design may not have been sufficient to detect the outcome of interest.

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10 CANCER CARE FOR THE WHOLE PATIENT effective patient–clinician communication identified in the National Cancer Institute (NCI) report Patient-Centered Communication in Cancer Care include (1) fostering healing relationships, (2) exchanging information, (3) responding to emotions, (4) managing uncertainty, (5) making decisions, and (6) enabling patient self management (Epstein and Street, 2007). As described in Chapter 1, however, these attributes are not commonly found in cancer care today. Current Patient–Proider Communication Most patients, including those with cancer, say they want more infor- mation from their physicians (Guadagnoli and Ward, 1998; Wong et al., 2000; Gaston and Mitchell, 2005; Kahán et al., 2006; Kiesler and Auerbach, 2006). Patients report being dissatisfied with the limited information they receive and when they receive it. Clinicians often have a limited understand- ing of patients’ information needs, knowledge, and concerns. As a result, they fail to provide the type or amount of information patients need and communicate in language that patients often do not understand (Kerr et al., 2003a,b; Kahán et al., 2006; Epstein and Street, 2007). Clinicians’ delivery of bad news is particularly problematic. Conversely, patients do not always disclose relevant information about their symptoms or concerns (Epstein and Street, 2007). Further, the majority of patients (ranging in studies from 60 to 90 percent) say that they prefer either an active or shared/collaborative role in decisions made during office visits (Mazur and Hickman, 1997; Guadagnoli and Ward, 1998; Dowsett et al., 2000; Wong et al., 2000; Gattellari et al., 2001; Bruera et al., 2002; Davison et al., 2002, 2003; Keating et al., 2002; Davison and Goldenberg, 2003; Janz et al., 2004; Gaston and Mitchell, 2005; Katz et al., 2005; Mazur et al., 2005; Ramfelt et al., 2005; Siminoff et al., 2005; Flynn et al., 2006; Hack, 2006). However, studies show that physicians substantially underestimate patients’ desire for an active or shared role in their care (Bruera et al., 2002; Janz et al., 2004; Kahán et al., 2006). Some physicians, particularly female and primary care physicians, have a more participatory or collaborative style with patients (Kaplan et al., 1996; Cooper-Patrick et al., 1999; Roter et al., 2002; Street et al., 2003). Lower levels of participatory decision making among physicians have been associated with several patient characteristics, including age, education, and minority status (Kaplan et al., 1996; Cooper-Patrick et al., 1999; Adams et al., 2001; Xu et al., 2004), although these patient character- istics do not account for the majority of the variation in conversational behavior among either physicians or patients during office visits (Kaplan et al., 1995; Benbassat et al., 1998). There is evidence that physicians and

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11 A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES patients mutually influence each other’s conversational behavior (Robinson and Roter, 1999; Del Piccolo et al., 2002; Street et al., 2003, 2005; Butow et al., 2004; Janz et al., 2004; Maly et al., 2004; Gordon et al., 2005; Kindler et al., 2005; Adler, 2007) and that physicians may take their cues in part from patients, who typically exhibit relatively passive behavior dur- ing office visits (Gordon et al., 2005, 2006a,b; Street and Gordon, 2006). Such passivity characterizes even physicians when they become patients. The average patient asks five or fewer questions during a 15-minute office visit, and many ask no questions (Brown et al., 1999, 2001; Sleath et al., 1999; Cegala et al., 2000; Butow et al., 2002; Bruera et al., 2003; Kindler et al., 2005). Among the most passive patients are those above age 60, those with more severe illness or multiple comorbid conditions (includ- ing psychological distress), those who are less well educated, and males (Butow et al., 2002; Sleath and Rubin, 2003; Street et al., 2003; Maliski et al., 2004; Gaston and Mitchell, 2005; Flynn et al., 2006; Gordon et al., 2006b; Siminoff et al., 2006a). Minorities also have been noted to be more passive in physician–patient interactions (Gordon et al., 2005; Street et al., 2005; Siminoff et al., 2006a; Gordon et al., 2006b). Moreover, a systematic review of randomized controlled trials and uncontrolled studies of inter- ventions designed to improve the provision of information and encourage participation in decision making by patients with advanced cancer found that although almost all patients expressed a desire for full information, only about two-thirds wished to participate actively in decision making about their care (Gaston and Mitchell, 2005). Correspondence between patients’ preferred role in decision making and their actual role during office visits with physicians, although intuitively compelling, has relatively little empirical support as a factor affecting pa- tient outcomes and quality of care. However, such correspondence has been linked with reduced anxiety (Gattellari et al., 2001; Kahán et al., 2006) and depression (Schofield and Butow, 2003), satisfaction with treatment choices (Keating et al., 2002), and more appropriate treatment choices (Siminoff et al., 2006b). The NCI report Patient-Centered Communication in Cancer Care articulates a comprehensive research agenda for better understanding and intervening to improve patient–provider communication (Epstein and Street, 2007). The Importance of Communication There is reason to be concerned about findings of poor communication and lack of patient involvement. A substantial body of evidence indicates that effective physician–patient communication is positively related to pa- tients’ health outcomes (Kaplan et al., 1989; Stewart, 1995; Piccolo et al., 2000; Heisler et al., 2002; Engel and Kerr, 2003; Kerr et al., 2003a,b;

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12 CANCER CARE FOR THE WHOLE PATIENT Schofield and Butow, 2003; Maliski et al., 2004). Patients of physicians who involve them in treatment decisions during office visits have better health outcomes than those of physicians who do not (Kaplan et al., 1995; Adams et al., 2001; Gattellari et al., 2001; Hack et al., 2006). Physicians’ participatory decision-making style also is positively related to the qual- ity and outcomes of patient care generally (Guadagnoli and Ward, 1998), including continuity of care (Kaplan et al., 1996), health outcomes (Adams et al., 2001; van Roosmalen et al., 2004), decreased psychological distress (Zachariae et al., 2003), trust in the physician (Berrios-Rivera et al., 2006; Gordon et al., 2006a,b), more preventive health services (Woods et al., 2006), better communication with physicians (Thind and Maly, 2006), and satisfaction with care (Kaplan et al., 1996; Adams et al., 2001). Similar benefits are found specifically in cancer care (Arora, 2003). Interentions to Improe Communication Many clinicians have identified a need for stronger communication skills for themselves, their patients, and families. Interventions to improve physician–patient communication have targeted either physicians or pa- tients; few have targeted both simultaneously (Epstein and Street, 2007). Training physicians to negotiate with patients has been found to in- crease patient involvement in treatment decisions (Timmermans et al., 2006). A substantial literature also documents the effects of interventions aimed at improving patients’ participation in their care (Epstein and Street, 2007). Such interventions include those aimed at improving patients’ par- ticipation in multiple decisions over multiple visits with physicians (e.g., question asking, decision elicitation, and negotiation skills), enhancing the presentation of options, tailoring risk information, and providing testimoni- als describing outcomes of treatment to help patients participate in single or discrete decisions and improve information seeking (question asking). The means used to deliver these interventions also vary widely. “Coached care” for chronic disease makes use of patient medical records, guidelines for clinical care management reviewed with patients before office visits, and coaching in using information to participate effectively with physicians. This approach has been linked with improved physiological and functional patient outcomes and increased patient participation in physician–patient communication among patients with chronic disease (Greenfield et al., 1988; Kaplan et al., 1989; Rost et al., 1991; Keeley et al., 2004). Decision aids to assist patients in choosing among treatment options have been shown to decrease decisional conflict, increase satisfaction with treatment decisions (Whelan et al., 2004), and decrease adjuvant therapy for low-risk patients with breast cancer (Peele et al., 2005; Siminoff et al., 2006b). An extensive literature documents the beneficial effects of interactive videos presenting treatment options, tailored risk information, and patient

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1 A MODEL FOR DELIVERING PSYCHOSOCIAL HEALTH SERVICES testimonials describing outcomes of treatment. Benefits include improved functional outcomes, increased confidence in treatment, and increased sat- isfaction with decision making (Flood et al., 1996; Liao et al., 1996; Barry et al., 1997). Following similar interventions, others have noted changes in patients’ treatment choices, favoring less invasive treatment (Mazur and Merz, 1996). O’Connor and colleagues (1995) note that these types of decision aids, compared with usual care, yield improvements in pa- tients’ knowledge of their disease and its treatment, more realistic expecta- tions, less decisional conflict, more active participation in office visits, and less indecision about options. No effect on patient anxiety was observed. Videos with or without supporting materials have been shown to en- hance patients’ understanding of treatment options (Onel et al., 1998) and physician–patient communication during office visits (Frosch et al., 2001; Brown et al., 2004a). In a review of small media interventions, counseling and small-group education sessions, or a combination of these approaches, Briss and colleagues (2004) found that while such interventions increased patients’ knowledge about their disease and the accuracy of their risk per- ceptions, whether such interventions lead to increased patient participation in treatment decisions has been less well studied. Other interventions to improve patient participation in care, such as the use of question-prompt sheets, audiotaping of visits, or more basic deci- sion aids, have been linked with greater patient involvement in treatment decisions (Butow et al., 1994; Guadagnoli and Ward, 1998; Cegala et al., 2000; Maly et al., 2004; Gaston and Mitchell, 2005). Conclusions Despite strong evidence for the importance of effective patient–provider communication and patients’ participation in decision making in achieving better health care outcomes, such communication is not yet the norm. As described above and in Chapter 1, physician–patient communication is generally inadequate, and patients are poorly prepared for communicating effectively (whether this involves simple information-seeking skills or more active involvement in treatment decisions). Physicians, too, are poorly pre- pared to elicit patients’ information needs and preferences for involvement in their care. There is a need for more creative and intensive interventions to enhance patient–physician communication and support patient decision making, targeting in particular those most at risk (e.g., older adults, those of lower socioeconomic status, and those with comorbid conditions includ- ing psychosocial distress and decreased cognition). Many approaches are being tested to meet this need. These approaches require more rigorous evaluation, especially in less well-organized health care settings. NCI’s state-of-the-science report on patient-centered communication in cancer care (Epstein and Street, 2007) can inform clinical practice, as well

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