In 2015, the American College of Surgeons (ACoS) Commission on Cancer will require cancer centers to implement screening programs for psychosocial distress as a criterion for accreditation. Although the ACoS standard articulates the required processes, cancer centers may benefit from guidance regarding the interpretation and customization of these requirements. This review, which was written by a joint task force from the American Psychosocial Oncology Society (APOS), the Association of Oncology Social Work (AOSW), and the Oncology Nursing Society (ONS), attempts to provide such guidance. The APOS, AOSW, and ONS represent over 36,000 oncology social workers, psychologists, nurses, chaplains, psychiatrists, and other physicians who provide psychosocial care to patients with cancer in the United States. The joint task force specifically developed consensus-based recommendations regarding the 6 components of the ACoS standard: 1) psychosocial representation on the cancer committee with a committee meeting that includes plans for screening, 2) timing of screening, 3) method/mode of screening, 4) tools for screening, 5) assessment and referral, and 6) documentation.
Screening for Psychosocial Distress
The National Comprehensive Cancer Network (NCCN) defines distress as an emotionally unpleasant psychological (cognitive, behavioral, emotional), social, and/or spiritual experience that might interfere with a patient's ability to effectively cope with cancer, its physical symptoms, and its treatment. Psychosocial distress, a common yet treatable condition in individuals with cancer, is associated with suffering and worse outcomes.[3-11] Data suggest that screening for and addressing distress not only enhances quality of life but also may be associated with improved cancer outcomes.[12-14] Unfortunately, distress often goes unrecognized in oncology care, necessitating systematic methods for its identification and treatment.[15, 16] Furthermore, psychosocial interventions can effectively reduce distress created or exacerbated by cancer.[17-22]
In addition to the ACoS Commission on Cancer standard, several other organizations, including the NCCN, the Institute of Medicine, and the American Society of Clinical Oncology, have identified the assessment and treatment of psychosocial distress in routine cancer care as a quality care standard.[2, 23, 24] The NCCN has developed the Distress Management Clinical Practice Guidelines, which outline the steps for evaluating and addressing distress in the cancer setting. The initial steps involve routine screening for psychosocial distress and the development of a system of evaluation and triage for those who screen positive, referral to appropriate care if indicated, and follow-up to ensure adequate care. These elements have been referred to as a comprehensive distress screening process.
Comprehensive Distress Screening Programs
Effective detection and treatment of distress in cancer settings require a comprehensive distress screening program. Such an approach involves not only the use of an appropriate distress screening instrument but also a system for administering screening, reviewing screening results, conducting follow-up assessments for patients identified as distressed, and referring for further evaluation, support, and treatment as needed. Moreover, the integration of a distress screening program should be approached as routine in high-quality cancer care, reducing the stigma often associated with mental health services.
The success of any comprehensive distress screening program will depend on having sufficient and qualified staff responsible for each component. The cancer care team will require training in procedures for distress screening and evaluation. Also, a network of psychosocial health care providers must be identified to care for patients who screen positive for distress and need further evaluation, support, and treatment. Evidence suggests that screening alone, in the absence of an established triage algorithm, does not improve outcomes. This network may include in-house mental health clinicians, especially at larger cancer care facilities; community-based clinicians; and agencies that can provide services. The network must also include an interdisciplinary team of health care providers, such as physicians, social workers, and nurses, to help address the multifactorial causes of distress outside of mental health. In addition, the delivery of psychosocial services by telephone may be a cost-efficient adjunct for overcoming patient-level and system-level barriers in accessing care.[27-29]
No single distress screening program will address the specific needs of every cancer center or oncology practice given variability in volume, resources, and culture. In the section below, we identify considerations and provide recommendations regarding each of the 6 components of ACoS standard 3.2, which will assist cancer centers in designing their own comprehensive screening programs.
Six Components in the ACoS Standard
Thoughtful approaches to each of the 6 required components will facilitate implementation of an effective, efficient, clinically meaningful, safe, equitable, and sustainable screening program. We believe that the recommendations below will assist cancer centers in achieving this goal, regardless of their setting, size, or resources.
1. Cancer committee meeting
The ACoS standard 3.2 requires documentation of discussion about screening for distress in the minutes of a leadership committee meeting and that a psychosocial representative (an “oncology social worker, clinical psychologist, or other mental health professional trained in the psychosocial aspects of cancer”) is identified to oversee the administration of the program and report annually on the program's fidelity. The representative should be familiar with rates and presentations of distress in cancer populations; basic clinical evaluation of distress; and the existing resources available to the center for relevant evaluations, treatment, and referrals. If no current staff member possesses this knowledge, then the center should hire a mental health professional with such expertise or provide additional training for an appropriate psychosocial representative before designing a screening program. Several sources are available to obtain this training, including a free online program offered by APOS (available at: www.apos-society.org), a course offered by the ONS entitled Integrating Psychosocial Care in Oncology Practice (available at: http://www2.ons.org/CourseDetail.aspx?course_id= 87), and the AOSW (www.aosw.org) (all Web sites accessed April 22, 2014).
We recommend that the following information be available to the cancer committee to guide the discussions on screening: ACoS standard 3.2; volume of patients at the center (number of new patients per month, number of daily ambulatory visits, etc); availability of mental health clinicians within and outside the center; and the NCCN guidelines for distress management. Given critical roles for nursing and social work staff in the implementation of distress screening at many centers, nursing and social work leadership should be involved in a collaborative effort.
We recommend that committee discussions begin with the fifth component, evaluation and referral of distressed patients, which may require the most planning, followed by the selection of a screening method. Committee discussions regarding the screening program should address the development of clear procedures for screening administration, scoring of responses, identification of clinical thresholds, and implementation of an action plan when patients exceed the clinical thresholds. Patient and family advisory groups may be useful in providing feedback to committee members regarding acceptability of the distress screening program for specific patient populations. Moreover, the distress screening program should be integrated into the cancer center's quality-assurance and safety committees.
2. Timing of screening
The ACoS Committee on Cancer accreditation standard requires that patients be screened at least once, at a “pivotal medical visit.” The timing of screening should occur at clinical visits when patients are at greatest risk for distress (eg, at diagnosis, transitions in cancer treatment, and completion of treatment).
The NCCN Guidelines for Distress Management (version 1.2013) also advise screening patients for distress at their initial visit and at appropriate intervals thereafter as clinically indicated, including at times of change in disease status (such as remission, recurrence, and progression). These guidelines identify additional times of vulnerability for distress, such as when patients undergo a diagnostic workup, learn about a cancer diagnosis, terminate treatment, etc (see Table 1).
|Finding a suspicious symptom|
|During diagnostic workup|
|Finding out the diagnosis|
|Change in treatment modality|
|End of treatment|
|Discharge from hospital following treatment|
|Transition to survivorship|
|Medical follow-up and surveillance|
|End of life|
Although no consensus on the exact timing of screening for distress exists, the few examples from the available research literature favor screening patients at every visit.[31, 32] One article recommended screening at every visit in medical oncology and weekly in radiation oncology. In practice, however, most screening for psychosocial distress occurs at entry into cancer care, which is typically at the time of diagnosis. Other common time points for screening include the start of a new treatment modality, completion of treatment, or referral to palliative care.
To ensure universal assessment of patients, 1 approach would be to begin screening within a specific time period after diagnosis. For example, screening for distress by the second oncology visit would be consistent with the ASCO Quality Oncology Practice Initiative measure. Delaying screening until after the initial visit may limit the detection of temporary and transient anticipatory distress related to diagnosis and facilitate more efficient allocation of health care resources. Distress can occur at various time points from a cancer diagnosis onward and may go unrecognized if screening is conducted only once.
3. Method/mode of screening
Multiple approaches are available to screen for distress using either clinician-administered or patient-administered assessments. Some screening assessments can be completed with both methods.
One benefit of clinician-administered screening is that it can be integrated into a review of systems evaluated at every visit, permitting immediate scoring and interpretation. Clinical intervention and triage can then occur in real time, which is particularly important when assessing acute risk (eg, suicidal ideation). Clinicians can immediately gauge whether a patient accurately comprehends a screening item and, if necessary, clarify responses. However, clinician-administered screening is time-intensive, and some patients may be more frank using self-administered forms. Also, nonmental health professionals may have limited training in how to ask and respond to questions regarding psychosocial distress.
Alternatively, patient-administered screening can consist of paper-and-pencil or electronic questionnaires with automatic scoring. Patients can complete such questionnaires in the clinic waiting room, during chemotherapy infusion, or before medical visits. This method affords greater privacy than face-to-face assessment, facilitating disclosure of distress and other sensitive concerns. However, the approach requires scoring of patient responses and clinician review, which must occur immediately to address any responses indicating severe distress or risk concerns (eg, suicidal ideation). Finally, the validity of patient-administered questionnaires may be compromised by factors such as visual impairments, low literacy or language barriers, difficulty comprehending certain items, and family members completing questionnaires on behalf of the patient.
Electronic administration of distress screening, which can provide immediate scoring, has become increasingly available and affordable. Some electronic systems may facilitate immediate triage, providing patients with referral information and educational materials.[37-39] Assessment tools that integrate with the electronic health record can populate the medical record with patient-reported data while also tracking distress over time. This approach requires the availability of portable electronic devices, computer kiosks in clinic, or remote internet access for patients.
If patients are able to complete questionnaires remotely by mail or online, processes should be in place to attend to their responses quickly, particularly if they indicate that they are in severe distress or in danger of self-harm. To limit liability, a conservative approach would be to refrain from asking questions about potential for self-harm or other-harm unless the questionnaire is administered in the clinic. However, this approach may severely limit the utility of the screening measure and limit the information obtained.
4. Screening tools
Oncology clinicians often fail to recognize patient distress in clinical encounters, underscoring the need for standardized screening methods. Ideally, each patient would meet with a clinician for a comprehensive psychosocial assessment at key time points during routine cancer care. However, because this approach is not practical in most settings, cancer centers should screen patients using brief, well validated screening tools.
Because distress has multiple dimensions, tools that assess only 1 aspect, such as depression or anxiety, are not sufficient. In addition, distress can occur in relation to other symptoms or quality-of-life issues, such as physical symptoms (ie, nausea or fatigue) or social concerns (ie, financial burden or family changes), and multidimensional screening may be indicated to understand the distress.
Various tools exist to screen for distress. These have been reviewed in detail elsewhere.[34, 41-43] These tools vary in length, comprehensiveness, cultural equivalence, and sensitivity/specificity for identifying patients who need further evaluation. Although not exhaustive, Table 2 includes some examples of instruments that have been validated with meaningful threshold values and applicability to individuals with cancer. We recommend selecting an instrument that has been psychometrically validated, preferably in patients with cancer. Consideration should be given to the availability of the instrument in other languages and its performance across diverse cultures and ethnic groups. Research is ongoing to develop and test an expanding array of screening options.
|Instrument||Psychometric Properties Sources||Items||Domains Assessed||Recall Period||Score Range||Recommended Cutoff Score||Time to Administer, min||Overall Judgment as Screenera||Ability to Identify Treatment Effectsb||Comments|
|Distress Thermometer (DT)||Jacobson 2005; Mitchell 2007||1||Distress||Past wk||0-10||≥4 (≥5 for special population; eg palliative samples)||<1||Fair||Fair||Usually administered with complementary problem list covering practical, family, emotional, physical, and spiritual domains; modifications/extensions available, including Impact, Mood, and Need for Help Thermometers|
|Patient Health Questionnaire-4 (PHQ-4)||Thekkumpurath 2011; Ryan 2012; Fann 2009||4||Depression, Anxiety||Past 2 wk||0-12 (0-6 for each subscale)||Depression subscale, ≥3; Anxiety subscale, ≥3||<1||Excellent (for combination depression questions)||Needs further testing||Total score indicator of general distress and overall symptom burden (mild, 3-5; moderate, 6-8; severe, 9-12); further validation of the PHQ-4 in cancer samples warranted|
|General Health Questionnaire (GHQ-12)||Reuter 2001; Goldberg & Williams 1988||12||Current mental health||Past few wk||0-36||≥5||5||Good||Poor||Focuses on 2 major areas: the inability to carry out normal functions and the appearance of new and distressing experiences; based on original 60-item version|
|Psychological Distress Inventory (PDI)||Morasso 2001; Morasso 1996||13||General emotional condition and psychological disorders related to illness adjustment||Past wk||13-65||29||Unknown||Good||Unknown||Tested in Italian populations|
|Hospital Anxiety and Depression Scale (HADS)||Mitchell 2010; Zigmond & Snaith 1983||14||Depression, Anxiety||Past 7 d||Total scale, 0-42; each subscale, 0-21 for each subscale||HADS-Total, ≥14; HADS-Depression, ≥11; HADS-Anxiety, ≥11||2-5||Good||Good||Large no. of validation studies with wide range of cutoff scores used; often used as criterion measure; total score used as indicator of general distress, psychometrically superior in nonpsychiatric samples|
|Brief Symptom Inventory-18 (BSI-18)||Thekkumpurath 2009; Recklitis & Rodriguez 2007; Zabora 2001||18||Global Severity Index (GSI); subscales: Depression, Anxiety, Somatization||Past 7 d||0-72||GSI: Men, ≥10; women ≥13; total BSI cutoff score, ≥63; total BSI score for cancer survivors, ≥50||4||Good||Fair||Based on Symptom Checklist-90-Revised (SCL-90-R) and BSI-53, which have additional domains|
Documentation of a provider's judgment that a patient is “coping adequately” does not fulfill the ACoS requirements if a standardized method for screening was not used. Moreover, we assert that more than 1 domain of distress must be assessed to meet the requirement. Examples of minimally acceptable instruments are the Distress Thermometer and the Patient Health Questionnaire-4 (PHQ-4).
Care providers should select a tool with consideration of patient burden, completion time, and ease of scoring. Deleting items from well established tools to make them briefer is unacceptable unless a validated shorter version exists. The sensitivity and specificity of instruments may inform an institution's selection of a screening tool, especially when considering available resources for follow-up care should a patient screen positive for distress. However, we recommend that the results of validated screening instruments should be interpreted using the published threshold values rather than modifying the cutoff scores to limit the volume of indicated follow-up assessments or mental health referrals.
5. Evaluation and referral
Because the goal of screening for psychosocial distress is to identify patients who need further assessment, support, and intervention, centers should implement screening only after developing a plan for reviewing results and managing patients whose scores suggest clinically significant distress. Research indicates that screening for distress improves patient outcomes only when linked to an effective system of treatment.[56, 57] Therefore, a process for evaluation and appropriate referral is the central component of a screening program.
We recommend developing a standardized protocol for scoring and reviewing the results of screening: identifying patients who require a follow-up assessment, conducting follow-up assessments, and referring for further evaluation if indicated. These steps should be carried out in a timely manner to address significant distress and safety concerns. The protocol should contain the following personnel roles: 1) a staff member responsible for overseeing the administration of the screening tool, collecting the screening results, and ensuring that a qualified clinician reviews the data; 2) a clinician or team of clinicians (nurse, social worker, psychologist, or physician) responsible for reviewing the screening data, determining which patients require a follow-up assessment based on the established criteria of the screening instrument, and ensuring those patients receive follow-up assessment; and 3) a clinician or team of clinicians (nurse, social worker, psychologist, or physician) responsible for the subsequent follow-up assessment of distressed patients.
Examples of protocols are these: A medical assistant could oversee the collection of screening data, which a nurse then reviews. The nurse identifies patients who meet criteria for a follow-up assessment and notifies a social worker who could conduct the follow-up assessment and determine whether further evaluation or referral is necessary. Alternatively, an oncologist could be responsible for all of the above elements—administering a screening instrument, reviewing the results, and then referring the patient for further evaluation or to appropriate services as needed. Some electronic screening packages automate the referral function, streamlining the process for a busy setting.
The goal of follow-up assessment for patients who meet the established criteria for distress is to clarify the nature of the distress and determine whether further action is needed. A follow-up assessment should include reviewing the results of the screening instrument, obtaining a brief history, and possibly administering additional assessment instruments to clarify the type, severity, and sources of distress. Any preliminary diagnoses or clarifications should be documented in the patient's medical record. In addition, we recommend that the clinician ask about suicidal ideation, given the increased risk of suicide in individuals with cancer. If nonmental health clinicians identify suicidal ideation, then we recommend an immediate mental health evaluation to assess risk and determine the appropriate level of care.
When a potential psychosocial problem is identified, a referral for further focused evaluation and treatment is usually warranted. In these patients, the NCCN guidelines regarding distress management should be followed. Also, nonclinicians, such as patient navigators or finance staff, are often equipped to address barriers to care, such as transportation problems or need for financial assistance.
The specific strategies that each cancer center employs to ensure adequate treatment for distressed patients will vary according to the center's specific patient population and available resources. However, we recommend an integrated care system that provides population-based, patient-centered psychosocial care that tracks outcomes and overcomes organizational challenges to care. For example, the evidence-based principles of stepped collaborative care represent such a system.
The clinician should document in the medical record the instrument used, results, and clinical interpretation of screening. Electronic importing of computerized screens, scanning of completed pen-and-paper instruments, and recording a patient's score within a clinical note are acceptable methods. For patients in whom distress is identified, a clinician should document the following at the appropriate time points: the review of screening results; plan for follow-up assessment; type, source, and severity of the distress; relevant history; any suicidal ideation; and types of recommended interventions, including a plan for further evaluation and by whom, or that no further evaluation or treatment is needed.
If a patient declines any of the aforementioned steps, then the clinician should document the patient refusal with the stated reasons. A patient may not have the right to refuse further evaluation if a safety risk is identified, and timely documentation is of vital clinical and medical-legal importance in such patients.
The implementation of programs to screen for psychosocial distress will enhance the quality of cancer care in institutions that comply with the ACoS standard for psychosocial distress screening. If cancer centers develop programs strategically and systematically, then screening can be implemented in a cost-efficient and sustainable way. Our hope is that oncology care institutions will seize this opportunity to provide personalized psychosocial care that could lead to decreased suffering, enhanced satisfaction with care, and, ultimately, improved health outcomes.