NCCN Guidelines® Insights: Distress Management, Version 2.2023

Featured Updates to the NCCN Guidelines

Authors:
Michelle B. Riba University of Michigan Rogel Cancer Center

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Kristine A. Donovan Moffitt Cancer Center

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Kauser Ahmed UCLA Jonsson Comprehensive Cancer Center

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Barbara Andersen The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute

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IIana Braun Dana-Farber/Brigham and Women’s Cancer Center

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William S. Breitbart Memorial Sloan Kettering Cancer Center

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Benjamin W. Brewer University of Colorado Cancer Center

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Cheyenne Corbett Duke Cancer Institute

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Jesse Fann Fred Hutchinson Cancer Center

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Stewart Fleishman Consultant

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Sofia Garcia Robert H. Lurie Comprehensive Cancer Center of Northwestern University

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Donna B. Greenberg Massachusetts General Hospital Cancer Center

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George F. Handzo Rev. Consultant

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Laura Herald Hoofring The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins

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Chao-Hui Huang O’Neal Comprehensive Cancer Center at UAB

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Sean Hutchinson UT Southwestern Simmons Comprehensive Cancer Center

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Shelley Johns Indiana University Melvin and Bren Simon Comprehensive Cancer Center

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Jennifer Keller Fox Chase Cancer Center

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Pallavi Kumar Abramson Cancer Center at the University of Pennsylvania

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Sheila Lahijani Stanford Cancer Institute

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Sara Martin Vanderbilt-Ingram Cancer Center

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Shehzad K. Niazi Mayo Clinic Cancer Center

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Megan Pailler Roswell Park Comprehensive Cancer Center

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Francine Parnes Patient Advocate

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Vinay Rao Yale Cancer Center/Smilow Cancer Hospital

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Jaroslava Salman City of Hope National Medical Center

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Eli Scher Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute

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Jessica Schuster University of Wisconsin Carbone Cancer Center

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Melissa Teply Fred & Pamela Buffett Cancer Center

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Angela Usher UC Davis Comprehensive Cancer Center

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Alan D. Valentine The University of Texas MD Anderson Cancer Center

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Jessica Vanderlan Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine

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Megan S. Lyons National Comprehensive Cancer Network

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Nicole R. McMillian National Comprehensive Cancer Network

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Susan D. Darlow National Comprehensive Cancer Network

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Full access

These NCCN Guidelines for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. All patients experience some level of distress associated with a cancer diagnosis and the effects of the disease and its treatment regardless of the stage of disease. Clinically significant levels of distress occur in a subset of patients, and identification and treatment of distress are of utmost importance. The NCCN Distress Management Panel meets at least annually to review comments from reviewers within their institutions, examine relevant new data from publications and abstracts, and reevaluate and update their recommendations. These NCCN Guidelines Insights describe updates to the NCCN Distress Thermometer (DT) and Problem List, and to the treatment algorithms for patients with trauma- and stressor-related disorders.

NCCN Continuing Education

Target Audience: This activity is designed to meet the educational needs of oncologists, nurses, pharmacists, and other healthcare professionals who manage patients with cancer.

Accreditation Statements

In support of improving patient care, National Comprehensive Cancer Network (NCCN) is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

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Physicians: NCCN designates this journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 CreditTM. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Nurses: NCCN designates this educational activity for a maximum of 1.0 contact hour.

Pharmacists: NCCN designates this knowledge-based continuing education activity for 1.0 contact hour (0.1 CEUs) of continuing education credit. UAN: JA4008196-0000-23-005-H01-P

PAs: NCCN has been authorized by the American Academy of PAs (AAPA) to award AAPA Category 1 CME credit for activities planned in accordance with AAPA CME Criteria. This activity is designated for 1.0 AAPA Category 1 CME credit. Approval is valid until May 10, 2024. PAs should only claim credit commensurate with the extent of their participation.

All clinicians completing this activity will be issued a certificate of participation. To participate in this journal CE activity: (1) review the educational content; (2) take the posttest with a 66% minimum passing score and complete the evaluation at https://education.nccn.org/node/92911; and (3) view/print certificate.

Pharmacists: You must complete the posttest and evaluation within 30 days of the activity. Continuing pharmacy education credit is reported to the CPE Monitor once you have completed the posttest and evaluation and claimed your credits. Before completing these requirements, be sure your NCCN profile has been updated with your NAPB e-profile ID and date of birth. Your credit cannot be reported without this information. If you have any questions, please email education@nccn.org.

Release date: May 10, 2023; Expiration date: May 10, 2024

Learning Objectives:

Upon completion of this activity, participants will be able to:

  • • Integrate into professional practice the updates to the NCCN Guidelines for Distress Management

  • • Describe the rationale behind the decision-making process for developing the NCCN Guidelines for Distress Management

Disclosure of Relevant Financial Relationships

None of the planners for this educational activity have relevant financial relationship(s) to disclose with ineligible companies whose primary business is producing, marketing, selling, re-selling, or distributing healthcare products used by or on patients.

Individuals Who Provided Content Development and/or Authorship Assistance:

The faculty listed below have no relevant financial relationship(s) with ineligible companies to disclose.

Michelle B. Riba, MD, MS, Panel Chair

Kristine A. Donovan, PhD, Panel Vice Chair

Francine Parnes, JD, MA, Patient Advocate

Megan S. Lyons, RDN, LDN, Guidelines Layout Specialist, NCCN

Nicole R. McMillian, MS, CHES, Senior Guidelines Coordinator, NCCN

Susan D. Darlow, PhD, Manager, Guidelines Information Standardization, NCCN

To view all of the conflicts of interest for the NCCN Guidelines panel, go to NCCN.org/guidelines/guidelines-panels-and-disclosure/disclosure-panels

This activity is supported by educational grants from AstraZeneca; Exact Sciences; Novartis; and Taiho Oncology, Inc. This activity is supported by an independent educational grant from Daiichi Sankyo. This activity is supported by independent medical education grants from Illumina, Inc. and Regeneron Pharmaceuticals, Inc.

Overview

All patients experience some level of distress associated with their cancer diagnosis and the effects of the disease and its treatment regardless of the stage of disease. Distress can result from the reaction to the cancer diagnosis and to the various transitions throughout the trajectory of the disease, including during survivorship. Clinically significant levels of distress occur in a subset of patients, and identification and treatment of distress are of utmost importance.

These NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. They are intended to assist oncology teams in identifying patients who require referral to psychosocial resources and to give oncology teams guidance on interventions for patients with mild distress. These NCCN Guidelines also provide guidance for social workers, certified chaplains, and mental health professionals by describing treatments and interventions for various psychosocial problems as they relate to patients with cancer. Education of patients and families regarding distress is important, and they should be encouraged to recognize that controlling distress is an integral part of their total cancer care. The patient version of the NCCN Guidelines for Distress Management is a useful tool to accomplish this (https://www.nccn.org/patientresources/patient-resources). These NCCN Guidelines Insights describe updates to the NCCN Distress Thermometer (DT) and Problem List and to the treatment algorithms for patients with trauma- and stressor-related disorders.

NCCN Distress Thermometer and Problem List

Identification of a patient’s psychological needs is essential for development of a plan to manage those needs.1 In routine clinical practice, time constraints and the stigma related to psychiatric and psychological needs often inhibit discussion of these needs. It is critical to have a fast and simple screening method that can be used to identify patients who require psychosocial care and/or referral to psychosocial resources.

The NCCN Distress Management Panel developed the DT, a now well-known tool for initial screening of distress with a rating scale ranging from 0 (no distress) to 10 (extreme distress), which is similar to the successful rating scale used to measure pain (see DIS-A, page 452). The DT serves as an initial, single-item question screen, which identifies distress coming from any source, even if unrelated to cancer. The DT can be administered in a variety of settings, such as through a patient portal or given by a receptionist or medical assistant. If the patient’s distress level is mild (DT score <4), the primary oncology team may manage the concerns with usual clinical supportive care. If the patient’s distress level is ≥4, a member of the oncology team will use the Problem List to identify key issues of concern and ask further questions to determine the best resources (psychiatry, psychology, social work, or chaplaincy professionals) to address the patient’s concerns.

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The DT has been validated by many studies in patients with different types of cancer, in different settings, and in different languages, cultures, and countries. The DT has shown good sensitivity and specificity. A meta-analysis of 42 studies with >14,000 patients with cancer found the pooled sensitivity of the DT to be 81% (95% CI, 0.79–0.82) and the pooled specificity to be 72% (95% CI, 0.71–0.72) at a cutoff score of 4.2 Although the DT is not a screening tool for psychiatric disorders, it has demonstrated concordance with the Hospital Anxiety and Depression Scale (HADS)313 and the Depression Anxiety and Stress Scale-21.14

The DT includes a 42-item Problem List, which is on the same page as the DT. The Problem List asks patients to identify their concerns in 5 categories: physical, emotional, social, practical, and spiritual/religious. The NCCN Distress Management Panel notes that the Problem List may be modified to fit the needs of the local population. Some investigators have adapted the Problem List for specific groups of patients (eg, patients with lung cancer, patients with central nervous system tumors).15,16

For the 2022 guidelines update, the panel modified the Problem List to better reflect patients’ most current concerns.17 Specific revisions include reorganization, consolidation, and deletion of some physical concerns (eg, “bathing/dressing” and “getting around” were deleted; “loss or change of physical abilities” was added). Specific emotional and social concerns were added and revised (eg, “sadness” and “depression” were combined into one item; “relationship with friends or coworkers” and “communication with healthcare team” were added). Finally, specific spiritual or religious concerns were added (eg, “sense of meaning or purpose,” “conflict between beliefs and cancer treatments”). The complete and up-to-date NCCN DT and Problem List can be viewed on DIS-A (page 452) and are also available at NCCN.org.

Financial Worries

Insurance and finances are included as practical concerns in the Problem List. Financial toxicity in cancer care is an important issue that impacts patients.1821 The cost of cancer care and diagnostic workup, as well as reduction in productivity or income due to limited ability to work, contribute to patients’ concerns about financial hardship.18,20,22 Financial worries in cancer survivors may be more common in those who are younger, are uninsured, have a lower income, have less education, were diagnosed with late-stage or recurrent disease, or are undergoing active treatment or were treated recently.2124 It is important for the primary oncology team to be aware of potential financial worries facing patients undergoing distress screening.

Treatment of Psychological/Psychiatric Disorders

Patients scoring ≥4 on the DT during any visit to the oncologist are referred to the appropriate supportive service (mental health, social work and counseling, or chaplaincy professionals) based on the identified problem. Mental health professionals are expected to conduct a psychological or psychiatric evaluation that includes an assessment of the following: the nature of the distress, changes in behavior, interpersonal problems, psychological/psychiatric history and symptoms, use of medications, substance use disorder, pain, fatigue, sleep/wake disturbances, other physical symptoms, cognitive impairment, body image, sexual health, and capacity for decision-making and physical safety. Demoralization, which is characterized by helplessness and loss of meaning and purpose, should be evaluated and distinguished from the presence of a depressive disorder.25,26 A psychiatrist, psychologist, nurse, advanced practice clinician, or social worker may perform the evaluation. All of these professionals are skilled in mental health assessment and treatment.

Patients with mental illness experience cancer disparities, such as increased cancer mortality rates, more-advanced cancer at time of diagnosis, and a greater number of comorbidities.2730 The panel has developed evaluation and treatment guidelines for the most commonly encountered psychiatric disorders, consistent with the classification in the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM).31 These disorders include neurocognitive disorders (dementia and delirium), depressive disorders, bipolar and related disorders, trauma- and stressor-related disorders (including adjustment disorders), anxiety disorders, substance-related and addictive disorders, schizophrenia spectrum and other psychotic disorders, obsessive compulsive and related disorders, and personality disorders. Psychotropic drugs are recommended throughout the guidelines to treat psychiatric disorders. It is important to note that these drugs can sometimes interact with anticancer therapies and cause adverse effects.

Patients considered to be a danger to themselves or others should receive a psychiatric consultation. Increased monitoring, safety planning, and removal of guns and other dangerous objects are warranted. For formal assessment of suicide risk, the Joint Commission’s Suicide Prevention Recommendations should be followed (https://www.jointcommission.org/resources/patient-safety-topics/suicide-prevention/). Homicide risk evaluation may also sometimes be necessary. Directing patients to the emergency department for further psychiatric evaluation may be considered. Mental health treatment/follow-up of these patients, family education regarding safety, and assuring the safety of others are warranted. Referral to social work and counseling services or chaplaincy care may also be considered.

Additional information regarding treatment of distress and psychiatric disorders in cancer can be found in the comprehensive handbook Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management32 and the comprehensive textbook Psycho-Oncology.33 Additional resources targeting specific age groups include the comprehensive handbooks Geriatric Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management34 and Pediatric Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management,35 which target management of psychological, cognitive, and social difficulties in older adults and children/adolescents, respectively. The NCCN Guidelines for Supportive Care may also be referred to as needed (available at NCCN.org).

Trauma- and Stressor-Related Disorders

Treatment algorithms for patients with trauma- and stressor-related disorders were significantly revised in the 2023 guidelines update. Trauma- and stressor-related disorders that may affect patients with cancer include posttraumatic stress disorder (PTSD), acute stress disorder, and adjustment disorder. PTSD may develop after arduous cancer treatments, during a cancer treatment that triggers a traumatic memory of a past frightening event, or just from the stress of a cancer diagnosis. Survivors of cancer may continue to experience PTSD symptoms,3638 and fear of cancer recurrence may be significant.

Reported cancer-related PTSD prevalence rates can vary, with higher rates in studies using self-report questionnaires for evaluation of PTSD symptoms, compared with studies in which PTSD was evaluated with structured, clinical diagnostic interviews.3941 Research on PTSD in patients with cancer largely comes from studies of white females with breast cancer.40 A 2015 meta-analysis including 25 studies with 4,189 cancer survivors (mostly survivors of breast cancer) showed that self-reported PTSD symptoms occurred in 7.3% of survivors, whereas rates based on structured clinical interviews were 12.6% for lifetime PTSD and 6.4% for current PTSD.42 A similar 2017 meta-analysis showed that prevalence of PTSD in cancer survivors was 12.8% based on self-reported measures and 4.0% if assessed via clinical interview.41 A 2021 meta-analysis including 7 studies of patients with breast cancer showed that clinically significant PTSD symptoms were present in 31.4% of patients prior to receiving treatment.43 A survey study including 566 survivors of non-Hodgkin lymphoma showed that one-third reported persistent or worsening PTSD symptoms over a 5-year period.44 Subsyndromal PTSD, in which PTSD symptoms (including impairment) are reported without meeting full diagnostic criteria, are also reported in patients with cancer.45

Risk factors for cancer-related PTSD include PTSD or other psychiatric diagnosis prior to cancer diagnosis; previous trauma history; lower socioeconomic status; younger age of cancer diagnosis; limited social support, or perception of negative social support; low emotional self-efficacy; avoidant coping; diagnosis of advanced disease; invasive cancer treatment; dissociative symptoms relating to one’s cancer experience; and persistent intrusive re-experiencing of one’s own cancer experiences.40,42,4656 A meta-analysis including 26 studies showed that posttraumatic stress symptoms were significantly positively associated with depression (r = 0.56), anxiety (r = 0.65), and distress (r = 0.62), and negatively associated with social support (r = −0.33) and physical quality of life (r = −0.44).57 A study including 82 patients with head and neck or lung cancer showed that elevated dissociative reactions and heightened emotional distress in the month following initial cancer diagnosis were significantly associated with cancer-related PTSD after completing treatment.46 Another study including 352 patients with breast cancer showed a significant correlation between cancer-related traumatic stress and perceived problematic interactions with nurses and physicians (P<.01).53

Although many patients may describe aspects of their cancer journey as “traumatic,”58 the stressor criterion in the most up-to-date DSM (“exposure to actual or threatened death, serious injury, or sexual violence”; DSM-5) is not intended to necessarily include cancer diagnosis and treatment, because meeting this criterion requires a “sudden, catastrophic event.”31 Although an event in which severe complications or adverse events are experienced may qualify for this criterion, meeting additional criteria is also required, specifically those relating to intrusion, avoidance, negative alteration in cognition and mood, and increased arousal and/or reactivity. Symptoms must also be present for >1 month, cause significant distress or impairment in functioning, and not be attributed to effects of a substance or other medical condition. Little research has been performed using the PTSD diagnostic criteria from DSM-5 in patients with cancer.40

Evaluation for adjustment disorder should be performed for patients who meet only some of the criteria for PTSD, if symptoms are not better explained by alternate disorders (eg, an anxiety or depressive disorder).39 Acute stress disorder is diagnosed in the first month following a traumatic event, and the criteria contain a greater emphasis on dissociative symptoms. Of patients diagnosed with cancer, 23% to 28% meet the criteria for acute stress disorder.52,5962 A study of 82 patients with head and neck cancer or lung cancer showed that only 40% diagnosed with acute stress disorder in the month following diagnosis met criteria for PTSD at 12-month follow-up (based on DSM-IV), indicating that acute stress disorder may not strongly predict later diagnosis of PTSD.52 Adjustment disorder refers to a cluster of symptoms, such as stress, depressive symptoms, and physical symptoms, following a stressful life event such as cancer diagnosis and treatment. It may be diagnosed when a patient who experienced a stressful life event does not meet criteria for PTSD or acute stress disorder. Adjustment disorder occurs in 15.4% of patients in palliative care settings and 11% to 19% of patients in oncologic and hematologic settings.6365

Conclusions

For the 2023 guidelines update, the panel separated management recommendations for adjustment disorder, PTSD, and acute stress disorder (see DIS-16 and DIS-17, pages 453 and 454, respectively). Evaluation and management of these 3 trauma- and stressor-related disorders are the same, except the following should be considered for PTSD and acute stress disorder: evaluation, diagnostic studies, and modification of factors relating to nausea/vomiting, withdrawal states, panic attacks, hypervigilance, fears, irritability, alcohol and recreational drug use, and spiritual/religious concerns. Treatment of these disorders includes psychotherapy (category 1) with or without an antidepressant and/or an anxiolytic. If this treatment yields no response or a partial response, then psychotherapy, support, and education should be reevaluated. Choice of medication should also be reconsidered, with a consideration of antipsychotics. The NCI’s Physician Data Query (PDQ) provides information on cancer-related posttraumatic stress education resources that may be useful for patients (https://www.cancer.gov/about-cancer/coping/survivorship/new-normal/ptsd-pdq) and healthcare professionals (https://www.cancer.gov/about-cancer/coping/survivorship/new-normal/ptsd-hp-pdq).

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NCCN CATEGORIES OF EVIDENCE AND CONSENSUS

Category 1: Based upon high-level evidence, there is uniform NCCN consensus that the intervention is appropriate.

Category 2A: Based upon lower-level evidence, there is uniform NCCN consensus that the intervention is appropriate.

Category 2B: Based upon lower-level evidence, there is NCCN consensus that the intervention is appropriate.

Category 3: Based upon any level of evidence, there is major NCCN disagreement that the intervention is appropriate.

All recommendations are category 2A unless otherwise noted.

Clinical trials: NCCN believes that the best management of any patient with cancer is in a clinical trial. Participation in clinical trials is especially encouraged.

PLEASE NOTE

The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) are a statement of evidence and consensus of the authors regarding their views of currently accepted approaches to treatment. The NCCN Guidelines Insights highlight important changes in the NCCN Guidelines recommendations from previous versions. Colored markings in the algorithm show changes and the discussion aims to further the understanding of these changes by summarizing salient portions of the panel’s discussion, including the literature reviewed.

The NCCN Guidelines Insights do not represent the full NCCN Guidelines; further, the National Comprehensive Cancer Network® (NCCN®) makes no representations or warranties of any kind regarding their content, use, or application of the NCCN Guidelines and NCCN Guidelines Insights and disclaims any responsibility for their application or use in any way.

The complete and most recent version of these NCCN Guidelines is available free of charge at NCCN.org.

© 2023 National Comprehensive Cancer Network® (NCCN®), All rights reserved. The NCCN Guidelines and the illustrations herein may not be reproduced in any form without the express written permission of NCCN.

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    Mitchell AJ, Chan M, Bhatti H, et al. Prevalence of depression, anxiety, and adjustment disorder in oncological, haematological, and palliative-care settings: a meta-analysis of 94 interview-based studies. Lancet Oncol 2011;12:160174.

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    Mehnert A, Brähler E, Faller H, et al. Four-week prevalence of mental disorders in patients with cancer across major tumor entities. J Clin Oncol 2014;32:35403546.

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    Van Beek FE, Wijnhoven LMA, Custers JAE, et al. Adjustment disorder in cancer patients after treatment: prevalence and acceptance of psychological treatment. Support Care Cancer 2022;30:17971806.

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