Daniel McFarland, DO
Awareness Alone Isn’t Enough
This article discusses “lessons learned” on managing psychosocial distress and the optimal strategies to promote institutions’ adoption of distress screening.
The estimated prevalence of psychosocial distress in cancer patients is 29.6% to 43.4%. Psychosocial distress is associated with depression, a common comorbidity in cancer patients. Untreated distress can contribute to early morbidity and mortality and can worsen other comorbidities. In 2012, the American College of Surgeons (ACoS) Commission on Cancer (CoC) required accredited cancer centers to integrate psychosocial distress screening into cancer care by the end of 2015. Uptake of screening has been minimal, with only 47% to 73% of eligible patients being screened. The Screening for Psychosocial Distress Program (SPDP) is a 2-year educational and implementation-support program designed to help cancer care clinicians meet the ACoS CoC mandate. Through the SPDP, we have trained cancer care clinicians on how to optimize the distress screening process to increase the likelihood that patients’ distress will be detected, evaluated, and triaged. We report here on our “lessons learned” and the optimal strategies to promote institutions’ adoption of distress screening.
As cancer treatment evolves and survival rates improve, more attention needs to be paid to other medical diagnoses beyond cancer. Cancer patients’ morbidity and mortality may be hastened by the presence of other medical conditions. Diabetes, chronic pulmonary disease, congestive heart failure, and cerebrovascular disease are the most common comorbid conditions in all cancer types. Patients with lung cancer have the highest prevalence of comorbid conditions; those with colorectal cancer have the second highest. Clinicians need to consider the number and severity of patients’ other medical conditions, as well as their age and cancer stage, since they have the potential to influence morbidity and mortality. Radiation therapy, chemotherapy, hormonal therapy, and surgery for the treatment of cancer can also have late effects on patients’ physical health. With chemotherapy and radiation therapy, treatment-related conditions include secondary cancers, congestive heart failure, diabetes, sterility, impaired immune function, lymphedema, cognitive impairment, neuropathies, and impaired kidney function. Late effects from surgical management include pain, cosmetic effects, lymphedema, sexual dysfunction, infertility, neurologic impairments, gastrointestinal upset, and bowel obstruction.
Psychosocial distress is associated with depression in cancer patients, which is considered a comorbid condition.[3,4] Depression is one symptom of psychosocial distress that has been linked specifically to increased mortality in cancer patients. Of note, cancer patients with preexisting emotional problems or physical limitations have increased mortality compared with patients who develop these problems after diagnosis. The data are still inconclusive as to whether untreated clinical depression increases the risk of cancer progression.[5,7] Cancer progression, however, raises the risk of clinical depression, with a prevalence greater than the general population. Cancer patients with psychosocial distress may experience mental, emotional, social, physical, and/or spiritual problems. Research has found that if distress is not detected and is left unmanaged, unintended consequences to quality and quantity of life may occur. These consequences include increased mortality rates, delayed time to treatment, poor adherence to treatment, and dysregulation of the immune system (see Figure).[2,10-14]
While all cancer patients must be considered at risk for developing psychosocial distress, patients with a history of depression, psychiatric disorders, substance abuse disorders, cognitive impairments, severe comorbid illnesses, social issues, spiritual concerns, and uncontrolled symptoms are at increased risk. Cancer patients may also experience increased vulnerability to psychosocial distress during major events through the course of their disease. Finding suspicious symptoms, the cancer diagnosis workup, learning one’s diagnosis, and genetic predisposition contribute to heightened psychosocial distress. After the diagnosis is learned and the treatment plan is established, other pivotal events linked to psychosocial distress include undergoing treatment, changing treatment(s), experiencing treatment-related complications/hospitalizations, and ending treatment. Once primary treatment has ended, patients transition to survivorship care and medical follow-up. Cancer patients’ psychosocial distress may return or progress due to the uncertainty of recurrence, adjustment to changing social roles (work, family), and events of recurrence or disease progression. When psychosocial distress that is associated with depression is recognized and managed, quality of life and symptoms have the potential to improve. Over the last 2 decades, studies have suggested that managing psychosocial distress symptoms and addressing cancer patients’ concerns have helped extend their lives; however, additional work is still needed in this area.[6,7,8,15]
In 2012, the American College of Surgeons (ACoS) Commission on Cancer (CoC) required accredited cancer centers to integrate psychosocial distress screening into cancer care by the end of 2015 to improve quality of life and prevent morbidity. However, uptake of screening has been minimal, with only 47% to 73% of eligible patients being screened. The slow rate of compliance to the CoC mandate may be due to institutional barriers, including inadequate administrative support; lack of an interdisciplinary oncology team; no established distress screening protocols; undereducated staff; confusion about which screening tool to use; immature electronic medical systems to aid in integrating the steps of comprehensive distress screening; and inadequate internal or external psychosocial resources to assist in managing distress.[17-19]
Cancer care clinicians, therefore, require training and support to develop and implement psychosocial distress screening programs in order to be successful in meeting the mandate and overcoming institutional barriers. There have been few formalized educational and implementation-support programs to train cancer care clinicians on distress screening, despite the ACoS CoC mandate and other recommendations. Funding, therefore, was obtained through the National Cancer Institute R25 Cancer Education Research Grant # R25CA177553 (R. McCorkle, primary investigator; 2013–2019) to develop and implement the SPDP, a national 2-year training and implementation-support program. The SPDP was advertised to institutions nationally. Two cancer care clinicians (dyads) representing 18 institutions were selected for each training cohort (cohorts 1–5; 180 participants and 90 institutions). The training consisted of in-person workshops and conference calls; the content was developed and delivered by psychosocial oncology leaders. An expert panel in psychosocial oncology reviewed participants’ applications, and then chose applicants based on the strength of their administrators’ commitment to and goals of implementing a distress screening program, as well as professional qualifications. We report here on “lessons learned” from training and guiding cancer clinicians in their development and implementation of psychosocial distress screening programs. These lessons represent optimal strategies to help cancer care clinicians achieve successful psychosocial distress screening programs, so that timely detection and management occurs. The Table summarizes our lessons learned and the optimal strategies to promote institutions’ adoption of distress screening programs.
Support of an institution’s distress screening program requires backing from key stakeholders, including administration, clinical staff, a continuous quality improvement team, the information technology department, and others. Our experience has demonstrated that buy-in of key stakeholders may happen at the level of the oncology interdisciplinary team and/or at the clinic level. Having buy-in allows departments to leverage their support when institutional barriers are encountered. Administrators represent a key stakeholder group that should be engaged early in the development of distress screening programs, since they have control over resources and finances, and oversee/enforce policy compliance.
Establishing a supportive relationship between two or more clinicians experienced with distress screening ensures a more enduring and successful distress screening program. Supportive dyadic relationships enable clinicians to distribute equitably relevant organizational tasks; share one or more common goals; and influence institutional communication and work. We have learned that committed dyads become recognized as legitimate and powerful distress screening program leaders who are better prepared to focus and sustain programs during challenges. Having a consistent set of clinicians who have the expertise and dedication to an institution’s distress screening program supports the program during times of upheaval, including administrative reorganization, turnover of distress screening staff, and updates in evidence-based practice guidelines requiring dissemination.
Daniel McFarland, DO
Awareness Alone Isn’t Enough
Unlike the symptomatic relief and overall survival benefit seen with reporting physical symptoms, there is something inherently different and more complicated about addressing psychological symptoms. We know that awareness of distress or other psychological symptoms by itself doesn’t ameliorate symptoms. This may be due to the limited number of patients who actually accept distress screening recommendations (only about 1 in 5 patients follow through with at least one follow-up appointment), the challenges of providing mental healthcare in a medical setting, and other systemic issues inherent in delivering broad psychosocial care. Therefore, the crucial second step in distress screening is what happens after distress screening? How do we bring limited psychosocial resources to those patients who need them the most in order to provide the most help to those with the most need?
The identification of psychologically high-risk individuals is only half the battle. The second half is to provide the most effective strategies for treating psychological symptoms in the context of cancer care. That will be borne out of well-integrated distress screening programs.This serves to underscore the importance of the first step in this process-that of increasing distress screening at cancer centers. Although guidelines have been in place since 1997, cancer centers tend to overestimate how much distress screening is actually performed, and many have yet to accept distress screening into their practices. This remains a systemic problem. The lessons learned from the Screening for Psychosocial Distress Program are invaluable for psychosocial oncology practitioners looking to forge the way at their respective oncology centers.REFERENCES1. Mitchell AJ, Vahabzadeh A, Magruder K. Screening for distress and depression in cancer settings: 10 lessons from 40 years of primary-care research. Psychooncology. 2011;20:572-84.
2. Funk R, Cisneros C, Williams RC, et al. What happens after distress screening? Patterns of supportive care service utilization among oncology patients identified through a systematic screening protocol. Support Care Cancer. 2016;24:2861-8.
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4. Zebrack B, Kayser K, Sundstrom L, et al. Psychosocial distress screening implementation in cancer care: an analysis of adherence, responsiveness, and acceptability. J Clin Oncol. 2015;33:1165-70.Dr. McFarland is Fellow of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center, New York, New York
The formation of an oncology interdisciplinary group (social work, nursing, psychology, psychiatry, oncology, chaplaincy, administration, and others) to set, direct, and evaluate distress screening policy and program objectives is invaluable. The CoC standard identifies the oncology interdisciplinary team as the group responsible for the screening, evaluation, treatment, referral, and follow-up of moderate or severe distress. An interdisciplinary psychosocial committee, therefore, has the knowledge, experience, and authority to establish distress screening policy that is in alignment with other institutional policies, external regulations, and practice guidelines. This committee is best suited to enforce compliance with the institution’s distress screening policy and procedures and recommend corrective strategies if noncompliance is found.
A distress screening program policy documents the overall purpose and scope, rationale, procedures, and evaluation criteria for auditing and monitoring compliance of distress screening activities. This policy results in a uniform set of processes and procedures across all cancer types and settings, and allows for a consistent institutional response to the problem of distress. Each discipline’s accountability to screen for, assess, manage, and follow up on a significant distress score is clearly spelled out, thereby minimizing confusion and fragmentation. Through our training program, we have found that many institutions lacked distress screening policies, resulting in inconsistent practices, duplication of efforts, and lack of accountability.
The successful implementation of distress screening programs depends on trained staff who possess both knowledge about psychosocial distress and skills on distress screening. Required training for clinical staff should include sessions on introducin g screening to patients and families, learning the scoring procedures for distress screening tools, notifying other clinicians due to a clinically significant distress score at the proper time, and monitoring follow-up of distress screening referrals. To maintain a standardized, comprehensive approach to psychosocial distress screening, it is advocated that clinical staff undergo initial and ongoing training. Our experience with the SPDP has shown that institutions recognize the importance of training staff who will be involved in distress screening, but often lack the administrative support or tools to conduct the training. Ideally, staff would be introduced to training early to support a smooth and effective distress screening process and a consistent/structured training program would be in place for newly hired staff and current employees.
Optimal distress screening procedures need to be based on patients’ and families’ self-report of their rating of psychosocial distress and the problems contributing to the distress. Screening tools for psychosocial distress should yield reliable and valid results. The major goal of a screening tool is to detect clinically significant distress to prompt further evaluation. Screening results should be documented in the medical record, and should show direct and straightforward administration of screening, scoring, referral, outcomes, and monitoring over a period of time. Currently, various screening tools are in use; the predominant tool is the National Comprehensive Cancer Network (NCCN) Distress Thermometer (NCCN-DT). The NCCN-DT is a single-item visual analog scale and is administered with a problem list describing sources of the distress. Many institutions use multiple tools to aid in their efforts to understand the specific attributes of distress and to rule out or rule in psychopathology, such as clinical depression, anxiety disorders, or other psychiatric disorders. It is recommended that institutions adopt screening tools that align with the needs of their patient population.
Once moderate or severe levels of psychosocial distress are detected, additional services are required to evaluate and treat the causes underlying the distress. Therefore, a process needs to be established and coordinated with distress screening detection procedures. Cancer care clinicians, including oncologists, social workers, and nurses, are encouraged to have a resource list containing names of psychiatrists, psychologists, pastoral care providers, palliative care providers, and others who have the clinical expertise to manage distress-related concerns. Institutions are also encouraged to seek resources beyond those offered onsite. Having an ample supply of cancer care clinicians who can treat distress-related concerns ensures that all patient needs will be met. We have found through the SPDP that it takes time and ongoing work to establish a well-coordinated referral network with the appropriate type and amount of cancer care clinicians to serve an institution’s specific patient population. Importantly, if the patient has seen a therapist before, he or she is encouraged to reestablish that relationship.
Following up on a clinically significant distress screening score ensures that distress-related problems have been further triaged, evaluated, and managed. It is encouraged that all steps of the distress screening process be documented in the medical record, including detection (screening), assessment and evaluation, management (including referral), and follow-up. Documentation of the distress screening process lends itself to determining whether the care follows the institutions’ policies and guidelines. Although the CoC mandate strongly recommends that the electronic record be used to document the seamless and coordinated steps of psychosocial distress screening, many of our participating institutions are still using paper and pencil, which presents challenges in accomplishing audits. A strength of our program has been to help institutions reach out and communicate with information technology departments to begin the process of designing platforms to build electronic documentation into their distress screening programs.
Psychosocial distress associated with depression is considered a major comorbid condition of cancer. It is estimated at any given time that 29.6% to 43.4% of cancer patients experience psychosocial distress, depending on cancer type. Unmanaged psychosocial distress has strong potential to negatively impact both morbidity and mortality and to exacerbate other comorbid conditions associated with cancer.[3,4] Comprehensive distress screening allows for the timely identification, evaluation, and management of psychosocial distress over the cancer experience. Distress screening tools and procedures may also result in the discovery of other medical or psychiatric comorbid conditions. This comprehensive support allows for the care of the “whole patient.” Although cancer care providers are well-intentioned in treating psychosocial distress, they report obstacles to accomplishing and sustaining comprehensive distress screening.[18,19] Through the SPDP, we have trained cancer care clinicians on how to optimize the distress screening process to increase the likelihood that patients’ distress will be detected, evaluated, and triaged.
Financial Disclosure:The authors have no significant financial interest in or other relationship with the manufacturer of any product or provider of any service mentioned in this article.
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