STANDARDS, GUIDELINES, AND QUALITY MEASUREMENT

A standard in medical care typically refers to a diagnostic or treatment process a clinician should follow for certain classes of patients, illnesses, or clinical circumstances. Standards may be developed on the basis of evidence, expert consensus, and/or ethical and safety considerations. With regard to the psychosocial domain, standards of care represent recommendations for the organization and delivery of psychosocial care that apply broadly to patients seen in oncology settings.

Clinical practices guidelines are generally more specific than standards of care. They are meant to provide information that can be of assistance in making clinical decisions on the basis of specific characteristics of the patient (eg, age, comorbidities), the illness (eg, disease severity), or the clinical circumstance (eg, symptom presentation). Like standards, clinical practice guidelines can be developed on the basis of evidence, expert consensus, and/or ethical and safety considerations. Existing clinical practices guidelines for the psychosocial care of patients with cancer have been developed by using several different methods and have been organized for presentation in a variety of formats.

Measurement of quality of care, broadly speaking, involves assessing the extent to which the actual organization and delivery of care conforms to standards of care and clinical practice guidelines. A widely used model⁵ differentiates three components that are important to consider in evaluating quality: the structure of care (eg, resources or personnel), the processes of care (eg, performance of specific diagnostic procedures or treatments), and the outcomes of care (eg, survival rates). Methods for assessing the quality of psychosocial care are still in an early stage of development in which the focus to date has been primarily on evaluating processes of care.

STANDARDS FOR PSYCHOSOCIAL CARE OF PATIENTS WITH CANCER

Efforts to promote greater awareness of the need for psychosocial care and its benefits for patients with cancer received a major boost in 2008 with the publication of an Institute of Medicine (IOM) report titled “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.”² The report summarized the considerable evidence about the deleterious effects of unmet psychosocial needs as well as the beneficial effects of providing psychosocial services. Among the report's major conclusions was that, despite evidence of the effectiveness of psychosocial services, many patients do not receive help for problems that would benefit from this type of care. To address this problem, the report included a list of recommended actions. The first and foremost recommendation is that all entities establishing or using standards for the quality of cancer care adopt a standard that calls for the provision of appropriate psychosocial health services. The recommendation further identifies several processes and goals of care as being components of this standard (Table 1).

Several initiatives predate the Institute of Medicine report in proposing standards that address psychosocial care. For example, the National Comprehensive Cancer Network (NCCN) has included standards of care as part of its clinical practice guidelines for management of cancer-related distress since the guidelines were first issued in 1999.¹⁰ In addition to identifying policies and procedures related to screening for and managing distress, the standards call for the formation of interdisciplinary committees at each institution to implement guidelines for distress management and for the availability of appropriately trained professionals on-site or by referral to deliver psychosocial care (Table 1).⁶ Initiatives promoting standards for the psychosocial care of patients with cancer are not limited to the United States. A notable example are the standards first developed by the Canadian Psychosocial Oncology Society in 1999 and updated in 2010,⁷ which are among the most comprehensive of any issued. In addition to identifying procedures for psychosocial screening and treatment, these standards cover the organization and structure of psychosocial services and the appropriate education and training of psychosocial care providers.

To date, standards for psychosocial care have been put forward by organizations and committees comprised mostly of members of the psychosocial oncology clinical and research community. Accordingly, there are concerns about the extent to which the wider community of oncology professionals is cognizant of these initiatives. Two recent developments bode well for wider awareness and acceptance of standards for the psychosocial care of patients with cancer.

In 2009, the American Society of Clinical Oncology (ASCO) and the Oncology Nursing Society (ONS) published their joint consensus-based standards for safe chemotherapy administration in ambulatory settings.⁸ The bulk of these standards describe policies and procedures for ordering, preparing, and dispensing chemotherapeutic agents. However, as part of monitoring and assessment, there is a standard indicating that patients' psychosocial concerns and need for support should be assessed and documented in the medical records on each clinical visit during chemotherapy administration (Table 1). Further, oncology practices are advised to maintain a referral list for psychosocial and other supportive care services.

The American College of Surgeons Commission on Cancer (ACoS CoC) is a consortium of 47 professional organizations that establishes cancer care standards and monitors quality of care at the more than 1,500 hospitals it accredits. In 2011, the ACoS CoC released several new standards for patient-centered care to be implemented in 2012.⁹ Among the new standards is one that specifies that a local oversight committee develop and implement a process for psychosocial distress screening and referral for the provision of psychosocial care (Table 1).

CLINICAL PRACTICE GUIDELINES FOR PSYCHOSOCIAL CARE OF PATIENTS WITH CANCER

Numerous organizations spanning several continents have proposed clinical practice guidelines that include recommendations for the psychosocial care of people with cancer.^6,11–15 Details about three of these are provided here to illustrate the different approaches that can be taken in developing and presenting guideline information about psychosocial care. The NCCN Guidelines for Distress Management, updated annually since 1999,⁶ consist primarily of recommendations for psychosocial screening, evaluation, treatment, and follow-up that are presented primarily in the form of clinical pathways. Most of the recommendations represent a uniform consensus among experts from NCCN member institutions that are based on lower-level evidence, such as clinical experience, as opposed to higher-level evidence, such as randomized controlled trials (RCTs). Recommendations for management of mood disorders (eg, depression) can be used to illustrate how these guidelines are organized. According to the guidelines, all patients should undergo brief psychosocial screening; those patients found to have moderate to severe distress should be referred to psychosocial care professionals. If patients are displaying signs and symptoms of a mood disorder, the initial recommendation is further evaluation, diagnostic studies, and modification of factors potentially contributing to the symptoms, such as concurrent medications and pain. On the basis of the findings, subsequent recommendations may include initiation of psychotherapy and antidepressant medication, possibly in combination with anxiolytic medication. Consideration of referral to social work or chaplaincy services is also recommended before follow-up and re-evaluation. A notable strength of these guidelines is the clear guidance they provide for the organization and delivery of psychosocial services given their clinical pathway format. A notable weakness is the limited use of higher-level evidence to provide care recommendations. For example, the pathways regarding management of mood disorders do not include recommendations for use of specific forms of psychotherapy or specific antidepressant or anxiolytic medications, although there is a body of evidence on this topic in people with cancer as described elsewhere in this issue.

In 2003, the National Breast Cancer Centre (NBCC) and the National Cancer Control Initiative (NCCI) in Australia issued their Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer.^13,16 These guidelines are presented largely as a series of specific recommendations accompanied by information about the level and sources of research support for each recommendation. Again, using mood disorders for illustrative purposes, the guidelines state that depression can be managed by incorporating a combination of supportive psychotherapy, cognitive and behavioral techniques, and pharmacotherapy; the guidelines also provide citations to Level I evidence (systematic review of all relevant RCTs) and Level II evidence (at least one properly designed RCT) that support this statement. The guidelines also include evidence-based recommendations for management of depressive symptoms at specific points in the cancer treatment continuum (eg, before surgery). As can be seen, a major strength of these guidelines is the transparency they possess regarding the strength of evidence supporting the recommendations provided. Notable weaknesses include the lack of regular updating and the challenges posed in integrating the vast number of recommendations provided into everyday clinical practice.

The third set of guidelines covers psychosocial care as part of a comprehensive approach to the care of cancer survivors. The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers was first issued by the Children's Oncology Group (COG) in 2003¹⁷ and has been updated periodically.¹⁵ In brief, these guidelines comprise recommendations for screening and managing late effects that can arise as a consequence of the treatment of pediatric, adolescent, and young adult malignancies and are designed to be applied to patients who have been off treatment for a minimum of 2 years. Consensus- and evidence-based methods were used in developing these guidelines. Where available, citations are provided for reviews and research studies that support guideline recommendations. Again, using mood disorders for illustrative purposes, the guidelines indicate that mental health disorders (eg, depression) are potential late effects of the cancer experience, regardless of previous treatment exposure. They also identify, based largely on research, factors that may increase risk for mental health disorders. The guidelines recommend, based largely on consensus, that survivors be screened on a yearly basis for mental health disorders as part of a broader psychosocial assessment. Recommended clinical interventions, also based largely on consensus, include psychological and social work consultations as well as use of psychotropic medications. In addition, the developers have produced HealthLink documents that provide summary information about emotional issues that can be used for patient and family education. The strengths of these guidelines are numerous and include sophisticated integration of evidence- and consensus-based methodology, the accompanying materials developed for patient education, and integration of psychosocial care into a broader set of guidelines for patient care. The major weakness of these guidelines is that their applicability is limited to longer-term survivors of pediatric, adolescent, and young adult cancers. Future efforts in guideline development should seek to extend this approach to individuals who are being treated or have been treated for adult-onset cancers.

MEASURING QUALITY OF PSYCHOSOCIAL CARE IN ONCOLOGY SETTINGS

Relatively little is known about the extent to which standards and clinical practice guidelines for psychosocial care of patients with cancer are being implemented. One source of evidence is a 2005 survey of 15 NCCN member institutions completed by a representative of each institution.¹⁸ Although psychosocial services were available at all 15 institutions, only eight institutions (53%) were conducting routine screening for distress as stipulated in the NCCN standards of care and clinical practice guidelines for distress management.⁶ Among these eight institutions, three (37.5%) reported screening all patients routinely and five (62.5%) reported screening only certain patients routinely (eg, candidates for transplantation). Of the eight institutions conducting any routine screening, seven (87.5%) reported that, consistent with NCCN guidelines,⁶ patients identified as distressed were referred to a mental health professional. Another source of evidence is a 2004-2005 survey of 448 oncologist members of ASCO.¹⁹ Sixty-five percent reported that they screened their patients routinely for distress; however, only 14% reported doing so by using a standardized screening instrument, such as the Distress Thermometer,²⁰ as recommended by the NCCN distress management guidelines.⁶ Not surprisingly, given the findings, only 35% of respondents indicated that they were “somewhat” or “very” familiar with these guidelines.

Taken together, the IOM report² and these surveys^18,21 suggest the need to foster greater implementation of recommendations for the psychosocial care of patients with cancer. One way to do that would be to measure and provide feedback to providers about the quality of the psychosocial care their patients with cancer receive. Research has shown that medical oncology practices provided with feedback demonstrating their poor performance on quality indicators display improvements over time on those same indicators.²² Could psychosocial care for patients with cancer likewise be improved by measuring and reporting to oncology practices their performance on indicators of the quality of psychosocial care?

To evaluate this possibility first requires measurable indicators of the quality of psychosocial care. Toward this end, the American Psychosocial Oncology Society (APOS) formed a workgroup in 2007 that was charged with developing quality indicators. Members of the workgroup included five mental health professionals (psychologists, psychiatrists, and social workers) with extensive experience in the delivery of psychosocial care to patients with cancer. The committee focused on developing process measures of the quality of psychosocial care that could be evaluated via medical record abstraction. Following a review of relevant literature, including the IOM report² and the NCCN Guidelines,⁶ committee members identified several potential indicators that were then reduced in number by using a modified Delphi method. This process resulted in selection of measures assessing two components that were considered to be necessary (although not sufficient) for providing quality psychosocial care.

The first quality indicator specifies there should be evidence in the medical record that the patient's current emotional well-being was assessed within 1 month of the patient's first visit with a medical oncologist. The second quality indicator stipulates that, if a problem with emotional well-being was identified, there is evidence in the patient's medical record that action was taken to address the problem or an explanation is provided for why no action was taken. Measurement of these indicators is operationalized by formulating questions that can be answered yes or no on the basis of the review of an individual patient's medical record.

The performance characteristics of these indicators were initially evaluated with medical record data for 1,660 patients with colorectal, breast, or non–small-cell lung cancer first seen by a medical oncologist in 2006 at 11 practice sites in Florida.²³ Rates of assessment of emotional well-being within 1 month of a first visit with a medical oncologist ranged from 12% to 86% across sites (median, 47%). Among the 13% of patients identified as having a problem with emotional well-being, rates of action taken (or explanation for no action) ranged from 13% to 100% (median, 57%). Direct comparison of mean performance rates indicated that pain was more likely to be assessed than emotional well-being (87% v 52%; P < .001). These findings show how use of these indicators permits identification of specific practice sites and processes of care that should be targeted for quality improvement efforts. The findings also demonstrate the extent to which routine assessment of emotional well-being lags behind routine assessment of pain in patients with cancer.

Evidence that providing feedback about the quality of psychosocial care could lead to improvements in care comes from ASCO's Quality Oncology Practice Initiative (QOPI), a voluntary practice-based quality improvement program.²⁴ In 2008, QOPI added the two quality indicators for psychosocial care developed by the APOS workgroup to its core set of measures completed by all participating practices. Practices participating in QOPI have the opportunity to submit chart audit information at 6-month intervals. Following submission of their data, each practice is provided with feedback about its own performance on each indicator as well as the average performance of all other participating practices on each indicator. An analysis was conducted by using data provided by participating practices to determine whether performance on these indicators improved between fall 2008 (when they became part of the core set) and fall 2009.²⁵ The analysis was based on 166 practices that participated in both audits and provided data on approximately 15,000 patients at each time point. The average rate per practice for performing an assessment of emotional well-being improved over time from 64% to 73% (P < .001). In contrast, the average rate per practice for taking action if a problem with emotional well-being was identified increased only from 74% to 76% (P = .41). These findings suggest that providing feedback alone may be more effective in promoting psychosocial screening than in improving the delivery of psychosocial care to patients in need.

CONCLUSIONS AND FUTURE DIRECTIONS

The growing number of standards and clinical practice guidelines that address psychosocial care reflect a burgeoning awareness of the value of evaluating and managing the psychosocial impact of cancer as part of routine clinical practice. These efforts have moved beyond initiatives directed primarily by members of the psychosocial oncology community^6,7 to include the incorporation of psychosocial care into standards for safe chemotherapy administration⁸ as well as standards for the organization, delivery, and monitoring of services provided by cancer programs.⁹ These developments bode well for greater awareness in the broader oncology community of the importance of providing psychosocial care.

In addition to raising awareness, existing standards and clinical practice guidelines provide useful guidance about the organization and delivery of psychosocial care and the types of services that should be used to address different issues. There are numerous guidelines addressing psychosocial care, some of which focus exclusively on this topic^6,16 and others that include psychosocial care as part of a broader focus.¹⁵ Moreover, the existing guidelines vary considerably in the extent to which they are consensus- versus evidence-based and in the formats used to present recommendations. Moving forward, two considerations should guide future development of guidelines in this area. First, it is important to ensure that procedures used to formulate and present guideline recommendations are consistent with recommended methods.²⁶ To address this issue, the quality of existing guidelines that address psychosocial care should be evaluated by using accepted methods such as the AGREE (Appraisal of Guidelines for Research & Evaluation) instrument.²⁷ The results are likely to suggest ways that existing guideline efforts in this area could be improved or could lead to the formation of new guideline efforts if improvements are not forthcoming. Second, greater effort needs to be devoted to embedding guidelines for psychosocial care into broader sets of cancer treatment guidelines. The COG Long-Term Follow-up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers¹⁵ are a notable example of how consideration of the psychosocial dimension of care was melded into a comprehensive set of guidelines addressing late effects of cancer treatment. Similar approaches should be considered in developing guidelines for adult-onset cancers, especially those for which psychosocial issues are frequently encountered (eg, head and neck cancer).

Evidence suggests that the issuance of standards of care and guidelines has, to date, had limited impact on improving routine clinical practice in oncology as it relates to psychosocial care.^18,21 Greater progress seems likely to occur if the quality of psychosocial care is actively monitored and the results are reported back to providers and other interested parties. The APOS indicators,²³ which have been adapted for use in QOPI,²⁵ represent an initial step in this direction. Momentum in this area is reflected by the fact that three other initiatives to assess the quality of psychosocial care in oncology settings are in various stages of implementation. First, the Cancer Quality ASSIST (Assessing Symptom Side Effects and Indicators of Supportive Treatment) project has developed a comprehensive set of indicators of the quality of supportive cancer care that includes a psychosocial care measure.²⁸ These indicators have undergone initial testing that demonstrates their feasibility, reliability, and validity and are ready for further evaluation in quality improvement projects. Second, oncology practices participating in ASCO's QOPI certification program²⁹ are being monitored for their adherence to the ASCO/ONS Standards for Safe Chemotherapy Administration,⁸ including the standards that refer to psychosocial care. Third, beginning in 2012, cancer programs seeking accreditation from the ACoS CoC will be monitored for their adherence to standards for patient-centered care that include distress screening and referral for psychosocial services.⁹ Recognizing that implementation may take time, these patient-care standards will be phased into the ratings used to determine accreditation status over a 3-year period.⁹

Finally, findings from QOPI suggest that providing feedback about the quality of psychosocial care can have a positive impact on rates of psychosocial screening. However, the lack of change seen for taking action in cases in which problems in emotional well-being were identified suggests feedback alone may not be sufficient to improve the delivery of psychosocial services. Possible explanations for this finding include a practice's lack of referral procedures for psychosocial care and/or a lack of identified resources for providing psychosocial care. Oncology practices seeking to address these issues would benefit from knowing how other practices have responded to similar challenges. One source of information would be the publication of case studies of how practices successfully improved their provision of psychosocial care. An example of this type can be found in a recent publication that provided an in-depth description of how a regional cancer center developed a counseling services program to address the unmet psychosocial needs of its patients.³⁰ Another source of information would be published findings from quality improvement projects designed specifically to closely document the processes used to improve psychosocial care and the outcomes achieved. Reports of this type have yet to appear in the literature and should be considered a high priority for future efforts to promote psychosocial care for patients with cancer.

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

The author(s) indicated no potential conflicts of interest.

AUTHOR CONTRIBUTIONS

Manuscript writing: All authors

Final approval of manuscript: All authors