Screening for distress: A communication tool that highlights patient concerns and facilitates psychosocial programme development
Introduction to screening for distress
Psychosocial programmes that may intuitively be in the best interest of our patients, even those supported by clinical observations and good science, are often subject to resistance. These programmes represent a change in health delivery culture and we know that, in general, change of any kind is met with resistance.
The practice of psychosocial oncology is seen as a somewhat ‘soft’ area and one that, in the minds of some, takes a lower priority. This is a problem, in that psychosocial professionals know clearly that our area of practice does change patient outcomes. The question becomes how to communicate these benefits and thereby change the culture to be one of greater acceptance and support.
To change the culture in health service delivery, we must learn to effectively communicate who we are, what we do, and how our practice will improve healthcare outcomes in a biopsychosocial world and in an economical way. In all of medicine and particularly in care today, we are seeing an increase in awareness of cancer care for the whole patient through the implementation of standardized screening for distress across the care continuum.
In psychosocial oncology, communication issues are ubiquitous. From primary treatment centres, to academic/tertiary care facilities and rural settings, patients face many of the same psychosocial and supportive care needs. In economically developing countries, psychosocial care delivery faces an even greater challenge because of the need to compete with basic primary cancer treatments. Even basic treatments, such as chemotherapy and radiation therapy, are limited and underfunded.
The goal of this chapter will be to discuss the impact and prevalence of biopsychosocial distress, the opportunities ‘screening for distress’ brings to the clinical teams’ awareness of the whole patient, and why screening for distress should be considered as a key aid in communication with the patient and the multidisciplinary team. Also, this chapter will highlight why screening for distress is a simple communication tool that might prove helpful in the development of psychosocial oncology programmes.
In the brief history of specialized cancer care, recognition of whole patient care and the specialty of psychosocial oncology (Rehse and Pukrop 2003; Stanton 2006; Zimmermann et al. 2007) have gained the attention of healthcare system administrators, providers, patients, and the advocacy community.
The growth and development of psychosocial oncology was triggered by the landmark text On Death and Dying (Kubler-Ross 1969). Prior to Kubler-Ross’s book, talking about death and dying had been a subject that not only received little attention, but also had been conspicuously avoided in an attempt to spare the patient depression, anxiety, and loss of hope.
Kubler-Ross’s book was a catalyst to change oncology practice. It rapidly caught the attention of healthcare providers, the academic community, and popular press, filling a gap in our knowledge about whole person and end-of-life care. In so doing, Kubler-Ross inspired a new discipline in healthcare—palliative care and psychosocial oncology. Since her pioneering work, there has been an exponential increase in many facets of pain and complex symptom management in the care of all patients, and particularly cancer patients. So transformational was the pioneering work of Kubler-Ross that it resulted in a cultural shift in medical education to include a science of caring applied to those facing a diagnosis of cancer and terminal illness.
Since the popularization of On Death and Dying, academic medicine, including psychology, psychiatry, social work, pastoral/spiritual care and nursing, began researching and teaching healthcare providers how best to treat physical pain, have a conversation about emotional distress, and improve the patient experience for those imminently facing death. Through research, psychosocial oncology and palliative care, professionals investigated new intervention strategies to improve quality of life, and reduce multifactorial suffering.
Today, a cultural shift in healthcare is taking place, whereby patients are better informed. Difficult topics we avoided in the past are more likely to surface, stimulated by patients, or the frank reality of the limitations of medicine. As a result, we see the importance of effective communication not only as something we must do, but something we must do well.
Branding distress the 6th Vital Sign
Despite the compelling research indicating high prevalence rates of distress in cancer patients (Zabora et al. 2001; Carlson et al. 2004), communicating these findings seems to have little consequence in facilitating adequate patient–staff ratios when establishing psychosocial oncology programmes, or in healthcare payment plans. Nonetheless, sharing the magnitude of the problem with administrators and colleagues is critical in creating a better understanding of the place of psychosocial oncology in each institution. In fact, the prevalence of patient distress has begun to garner the attention of policy makers with the branding of distress as the 6th Vital Sign in cancer (Bultz and Carlson 2005, 2006; Holland et al. 2007; Bultz and Johansen 2011). Starting from the endorsement of distress as the 6th Vital Sign by the Canadian Strategy for Cancer Control (Rebalance Focus Action Group 2005), a cultural shift is taking place.
In 2010, the International Psycho-Oncology Society (IPOS) endorsed the significance of whole patient care with its standards, stating that:
◆ Quality cancer care must integrate the psychosocial domain into routine care; and
◆ Distress should be measured as the 6th Vital Sign after temperature, blood pressure, pulse, respiratory rate, and pain.
Following the declaration of these guiding principles in oncology, 75 cancer care organizations and societies including the Union for International Cancer Control (UICC) have now endorsed the IPOS standards. Furthermore, the American College of Surgeons Commission on Cancer, an accreditation body, emphasized the need to develop and implement a process to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care (American College of Surgeons Commission on Cancer 2012). As well, Taiwan mandated screening for distress as the 6th Vital Sign in 2013 and the UICC stated in Target 8 of the World Cancer Declaration that effective pain control and distress management services will be universally available by 2025 (http://www.uicc.org/world-cancer-declaration). These endorsements more than opened the door for whole patient care and indeed mandated and legitimized the role of psychosocial oncology within cancer care programmes.
Role of screening for distress
There is general agreement that the percentage of cancer patients who initiate a request for psychosocial care represent a small fraction of those who are distressed (Carlson et al. 2004). Consequently, psychosocial programmes face the challenge of identifying the larger population of patients who are distressed, but have not sought help. To address this challenge, a number of governmental and professional organizations have recommended that cancer patients be routinely screened for the presence of heightened distress (National Comprehensive Cancer Network 1999; National Institute for Clinical Excellence (NICE) 2004; Rebalance Focus Action Group 2005).
Several arguments can be made for implementation of routine screening for distress. First, evidence suggests that heightened distress is associated with a number of negative outcomes, such as poorer adherence to treatment recommendations (Kennard et al. 2004), worse satisfaction with care (Von Essen et al. 2002), and poorer quality of life (Skarstein et al. 2000). Second, heightened distress is highly treatable. Numerous randomized controlled trials show that psychological distress, including anxiety and depression, can be alleviated by pharmacological and non-pharmacological interventions (Jacobsen et al. 2006). Third, heightened distress is common. Prevalence estimates derived from large-scale studies typically exceed 30% (Zabora et al. 2001; Carlson et al. 2004). A fourth, and perhaps most important reason to screen routinely is evidence that heightened distress often goes unrecognized, and therefore untreated, by oncology professionals (Fallowfield et al. 2001).
Although routine administration of a screening measure would address the problem of underrecognition of distress, clinicians seem reluctant to use these tools (Mitchell 2007). The format and length of many existing tools may be a barrier; the time required for administering, scoring, and interpreting these measures favours use of more informal but less reliable methods. To address this, several ultra-short screening tools have been developed, such as the single-item distress thermometer (National Comprehensive Cancer Network 1999). A systematic review concluded that these ultra-short tools have psychometric properties that favour their use for screening purposes (Mitchell 2007). There is recognition, however, that physical symptoms (e.g. pain and fatigue) are major contributors to psychological distress (Carlson et al. 2004; Graves et al. 2007). Therefore, multisymptom approaches to screening, such as the Edmonton Symptom Assessment System (ESAS) (Watanabe et al. 2011) have been recommended (Canadian Partnership Against Cancer 2009) and are being used in many settings as part of a broader approach to routine distress screening that may have greater clinical utility (Bower et al. 2014).
It is tempting to believe that greater recognition of distress through implementation of routine screening will lead directly to less psychological suffering. Unfortunately, the evidence does not support this view. For example, a randomized trial found no differences in health-related quality of life between cancer patients whose care providers did and did not receive the results of a quality of life assessment (Rosenbloom et al. 2007). These and others’ studies (McLachlan et al. 2001; Boyes et al. 2006) have taught us that information about heightened distress provided to treating clinicians must be accompanied by specific actions on their part for screening to make a difference. For example, a recent study compared a usual practice condition in which oncology care providers rated their patients’ distress and decided if referrals were indicated, versus a screening condition in which providers received information about whether a patient’s level of distress exceeded a cut-off, suggesting referral to psychosocial care (Bauwens et al. 2014). Findings showed that 5.5% of distressed patients in usual care vs. 69.1% of distressed patients in the screening condition received referrals, and that 3.7% of distressed usual care patients vs. 27.6% of screened distressed patients ultimately accepted the referral.
The importance of referrals in improving patients’ emotional well-being is underscored by a seminal study conducted by Carlson and colleagues that compared cancer patients randomized to receive: minimal screening plus usual care; full screening with report to care providers; or full screening plus triage with referral to resources (Carlson et al. 2010). Findings showed that patients in the last group were more likely to receive a referral and more likely to score below the cut-off for high distress on the distress thermometer at follow-up than patients in the other two groups.
The evidence that screening alone does not improve quality of life outcomes, points to the importance of linking screening activities to referrals with psychosocial oncology professionals. Patients identified as distressed need to be referred to professionals who have the requisite skills to identify the source(s) of patient distress and apply the appropriate interventions in a timely manner. This view is consistent with conclusions of a recent US Institute of Medicine report (Adler et al. 2008) on meeting the psychosocial health needs of cancer patients. The report identified three components as being fundamental to the delivery of effective care:
1. the identification of psychosocial needs through activities such as routine screening;
2. the development and implementation of a plan that links patients with needed psychosocial services, and coordinates psychosocial and biomedical care; and
3. follow-up and re-evaluation.
Clearly, this model of care will need to be operationalized in different ways given the resources available and the volume of patients seen in any particular setting. Nevertheless, it serves as a useful model for planning a new psychosocial oncology programme or evaluating the adequacy of existing programmes, and may lead to a better understanding of staffing ratios required to address patient needs.
Strategies for psychosocial programme development
The primary factor contributing to the successful development/expansion of a psychosocial oncology programme is institutional support that builds from the need being articulated from front-line nursing staff, physicians, and clinical team leaders to administrator decision makers. Regardless of how the development process is initiated, it is incumbent on those involved to identify the goals of the proposed programme, provide support based on patient’s screening data and enumerate the resources necessary to achieve those goals.
The most important resource for programme development is personnel. Consideration of the programme’s goals, which are to reduce multifactorial patient distress along the cancer trajectory, enhance patient’s quality of life and improve patient reported outcomes, should guide selection of the disciplines to be represented in the programme (e.g. psychiatry, psychology, social work, and/or spiritual/pastoral care). For example, programmes that seek to offer a comprehensive array of psychosocial services and assist all patients identified as ‘distressed’ will require a greater number of professionals from a greater number of disciplines, than programmes that are more narrowly focused.
Given the limited resources generally available for development of psychosocial programmes, it is essential to maximize their use. A key objective must be to have all psychosocial professionals working together in a collaborative fashion. Toward this end, the roles and responsibilities of each professional are defined, in part, by their areas of expertise and professional training, which need to be clearly outlined. Often, this begins with an initial evaluation of programme needs in order to determine what mental health disciplines and support services need to be involved in patient care. In addition to limiting duplication of effort across disciplines, this approach maximizes the utilization of each professional’s skill set.
All cancer care must be evidence-based. Fortunately, there have been many studies demonstrating interventions that are effective in helping patients and their families cope with the diagnosis and treatment of cancer. With continued research in psychosocial care, there is an ever-increasing body of knowledge outlining the benefits to patients and the cost-offsets for healthcare systems. Part of the role of psychosocial oncology must be to share these findings with medical colleagues and the public. Within the academic institution, formal channels exist in the form of rounds, grand rounds, internship and residency training, and advisory and board meetings. Being ‘at the table’ with administrators and other decision makers presents this opportunity. Speaking to colleagues and other health providers at local, national, and international meetings can be seen as essential in the development of psychosocial oncology. Educating patient groups and the media is another effective tool to promote the value and impact of psychosocial oncology.
Making the business case
Psychosocial programme development may be easier to accomplish within the not-for-profit sector, where the goal is generally to create value by enhancing the social good (Collins 2005). In this sector, funding for psychosocial programmes almost always comes from institutional resources, philanthropy, or billing for services. Given that in private healthcare systems, mental health professionals are reimbursed for services at significantly reduced rates when compared to medical or surgical services, strong institutional support and philanthropy are usually essential if a programme is to develop. In nationalized health systems, a number of factors need to be raised to support the importance of these services. Importantly, when reporting on the prevalence of distress, the research and clinical value of the multidisciplinary team, the accreditation requirements, and the cost-efficacy case is all-critical, and need to be constantly articulated to build up support for the service.
In the for-profit sector, making the ethical/compassionate case should be one of the main drivers, rather than a typical business model where profit is the primary metric. Effective arguments should include: hospital/cancer centre accreditation; patient safety; risk management; cost savings to the institution; quality patient care; and patient satisfaction. Perceived competitiveness becomes more an issue in for-profit settings. These points represent the most compelling motivations for institutions to core fund the development of psychosocial programmes. However, given funding constraints, fundraising and philanthropy should be considered a viable supplemental option.
In the American system, most, if not all, hospital-based psychosocial oncology programmes are often poorly reimbursed and are, therefore, seen as a cost centre for the institution. However, evidence suggests that timely and appropriate psychosocial care can, in fact, reduce costs (Adler et al. 2008). Therefore, in developing a psychosocial programme, a strong business plan is necessary to demonstrate credibility in the domains of service, research, and education. But even the strongest business case will not be adequate to fund a programme if there is a lack of leadership, vision, and teamwork. Great psychosocial programmes grow because they provide relevant, targeted, and highly visible services that are helpful to the cancer experience of the patient and add prestige to specific key constituents.
Regardless of the particular constituency, it is necessary to understand what motivates stakeholders as they relate to psychosocial care. In simple terms, why should other stakeholders care about psychosocial oncology? What do they have to gain, or lose, with the implementation of a psychosocial oncology programme? How can these programmes enhance patient care, improve compliance, and perhaps even enhance survivorship? It is always important to remember that a new or evolving psychosocial oncology programme is extremely vulnerable to resistance or opposition. While it takes a great deal of time and effort to create a new programme, it takes very little effort to undermine one. Therefore, it is essential at the outset to build bridges with other programme leaders and to highlight the value added by the psychosocial programme; it is essential to understand the perspectives of those who can support these programmes. This starts with knowing what these individuals value most in the present climate, then clearly identifying specific benefits to them as professionals and if possible, to them personally (e.g. bonuses for performance) and finally delineating specific performance outcomes (e.g. enhanced patient experience, more new patients seen, efficiencies, and quality). General statements about compassionate care are seldom adequate to engage highly stressed, busy colleagues. This is where working as an integrated, interdisciplinary team with one unified message can almost always be the difference between success and failure. When all team members think like a programme with an aligned, unified message, there is a stronger likelihood of a culture shift that is essential for programme implementation and growth (Loscalzo et al. 2011).
Communication strategies with nursing
Psychosocial teams that do not engage with the nursing team from the beginning do so at their own peril, and simultaneously lose powerful allies. The psychosocial team can easily build meaningful relationships with nursing by evaluating what they value. Nurses at the bedside care about making patients feel safe and comfortable, and about reducing suffering. They are also committed to ensuring that patients and their family members get the best medical and psychosocial services possible. Research is beginning to demonstrate the benefits of ‘screening for distress’ as a valuable tool for identifying patients with varying levels of distress, so that a conversation between nurse and patient can take place. It is well known that screening by itself is not enough. Screening followed by a conversation about key concerns and referral to the appropriate professional for treatment can in fact be facilitated in a timely way and can make the difference in better outcomes for the patient and heathcare team. As screening becomes standard practice, it therefore will become necessary to teach and train the healthcare team how to effectively and efficiently use findings from screening questionnaires.
What physicians want from the psychosocial programmes
Physicians want to be sure that patients receive the best services possible, in the most efficient and cost-effective way possible; therefore, it is important that the psychosocial programmes focus on these areas. Physicians who are clinically focused are much more concerned with the quality of direct services to patients and families. All professionals would like to see a smooth-flowing and organized clinic, where patients and families are supported, and distress is prospectively managed by the interdisciplinary team.
Psychosocial services have become highly specialized and are tailored to the changing treatment regimes. Therefore, it is best to have an assigned psychosocial oncology professional with expertise in the specific cancers working in a particular clinic. This ensures that psychosocial interventions are evidence-based and state-of-the-art. This model also supports the highest levels of team functioning. Because cancer clinics tend to be high stress and emotionally charged environments, it is a great benefit to the patients, physicians, and nurses to have a team member who is knowledgeable about that setting and is built into the system of caring. Despite the recommendations by the Institute of Medicine and accreditation bodies, physicians may not have the time or the skills necessary to diagnose and or manage complex psychosocial problems. They may see these issues as a distraction and as a misuse of their time. This reluctance on the part of physicians provides a unique opportunity for the psychosocial team to introduce distress screening to facilitate whole patient care into the interdisciplinary team. While physicians seldom hold the unrealistic expectation that the psychosocial team will ‘fix’ the distressed patient or family member, they do expect that the psychosocial professional will improve the patient experience within the healthcare setting, benefiting all stakeholders.
A necessary role of the psychosocial team is educating physicians about the psychosocial perspective in an ongoing disease process. By far, most of the education will be as result of case-based role modelling by the mental health professional. For example, the mental health professional can demonstrate the ability to enable the patient and their family members to focus their distress to meaningful communication, which under the best circumstances can be replicated by the physician. Mental health professionals can demonstrate to physicians, through role modelling with actual situations in the clinic, the process of engaging emotionally upset patients by:
1. taking the time to listen and to allow for emotional ventilation;
2. repeating back what you think you heard, so the patient or family member can fill in key areas;
3. giving emotional support and praise for putting concerns into words;
5. developing a meaningful plan of action with the patients, family, and healthcare team; and
6. clearly defining a follow-up plan and evaluation of effectiveness.
What hospital administrators want from the psychosocial team
The pressures on hospital administrators are constant and intense, as they are charged with managing many complex problems on a daily basis. Having acknowledged this fact, we also know that hospital administrators are essential partners in creating a successful psychosocial programme. They see themselves as caring individuals who bring order and fiscal discipline to institutions, and it is in this context that psychosocial professionals must help them see the significant benefits this area of practice can bring. For psychosocial programmes to be successful, there needs to be a clear and understandable rationale as to why they should exist and a compelling argument as to why resources must be diverted from other areas. Screening for distress data can be significantly influential since it comes from the home institution (it is ‘their’ data), impacts patient care, the bottom line, and many other variables that matter deeply to hospital administrators. An added value of screening is that it encourages professionals to align and to use scarce resources wisely. Therefore, the psychosocial team must be able to communicate with administrators about the psychosocial benefits to patients and the institution. Benefits about public image, being a compassionate facility, and cost savings are some of the key discussion points that serve to attract administrators’ attention. Any programme without clear objectives, benefits, and identified liabilities will raise the suspicion of administrators. Since psychosocial care may be seen as a ‘soft’ science by some, it is necessary to ensure that goals and objectives are clearly stated, and that benefits to the institution are repeatedly communicated.
Hospital administrators need to understand how ‘screening for distress’ and the psychosocial programme can support the vision and mission of the institution. The psychosocial oncology programme must be seen as the ‘connective tissue’ of the healthcare system and must be perceived as essential for the institution to reach its goals. Increasingly, accreditation standards are recognizing this important area, and certainly hospital administrators are concerned about the accreditation of their facility. Effectively identifying and addressing barriers to medical care is a key role. Through systematic screening and the management of patient distress, the psychosocial team can work to improve patient reported outcomes. This is an environment where the psychosocial team can clearly demonstrate to administrators and others the value of psychosocial management of complex problems. The benefits to the patient, family, healthcare staff, and to the system overall are many and are objectively measurable.
Summary and conclusions
Cancer will affect at least 40% of our population over the course of their lifetime and 35–45% of affected individuals will suffer from clinically significant distress (Zabora et al. 2001; Carlson et al. 2004). These figures, combined with ever-increasing survival rates and life expectancies, make quality of life a salient issue for cancer patients and survivors. Thus, the need for psychosocial care to help patients adjust and cope and live with the sequelae associated with cancer and its treatments has never been greater.
Despite significant advances in clinical care, research and education programme development in psychosocial oncology still has a ‘hard row to hoe’. Given the ‘soft science’ argument waged against psychosocial oncology, it becomes increasingly imperative to communicate clearly about the relevance of screening for distress and the benefits of psychosocial care from an evidence-based perspective, focusing on the value added in the care of the patients, the benefits to the healthcare team and the institution. However, with the increased attention to the patient experience, ability to cope, and quality of life over the past three decades, psychosocial oncology has begun to play an increasingly central role in comprehensive cancer care. Clinicians, researchers, and educators must continue to work diligently to demonstrate the benefits of screening patients for distress. They must also ensure the appropriate referral to the right professional in a timely way as an important strategy in reducing patient burden, enhancing quality of life, and reducing healthcare costs. Like Sisyphus from Greek mythology continually struggled to push a boulder uphill, psychosocial oncology continues to face challenges in gaining a place as a core service in cancer care.
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