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NCCN Clinical Practice Guidelines in Oncology™
Distress
Management
V.1.2010
www.nccn.org
Version 1.2010, 01/22/10 © 2010 National Comprehensive Cancer Network, Inc. All rights reserved. These guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN.
Practice Guidelines
in Oncology – v.1.2010
Guidelines Index
Distress Management TOC
Discussion, ReferencesNCCN
®
Distress Management
NCCN Distress Management Panel Members
Jimmie C. Holland, MD/Chair
Memorial Sloan-Kettering Cancer Center
Caryl D. Fulcher, RN, MSN, CS
Duke Comprehensive Cancer Center
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Barbara Andersen, PhD
The Ohio State University
Comprehensive Cancer Center -
James Cancer Hospital and
Solove Research Institute
William S. Breitbart, MD
Memorial Sloan-Kettering Cancer Center
Bruce Compas, Phd
Vanderbilt-Ingram Cancer Center
Moreen M. Dudley, MSW
Fred Hutchinson Cancer Research Center/
Seattle Cancer Care Alliance
Stewart Fleishman, MD
Consultant
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Matthew J. Loscalzo, MSW
City of Hope
Comprehensive Cancer Center
Sharon Manne, PhD
Fox Chase Cancer Center
Randi McAllister-Black, PhD
City of Hope
Comprehensive Cancer Center
Michelle B. Riba, MD, MS
University of Michigan
Comprehensive Cancer Center
Kristin Roper, RN #
Dana-Farber/Brigham and Women’s
Cancer Center
Alan D. Valentine, MD
The University of Texas
M. D. Anderson Cancer Center
Lynne I. Wagner, PhD
Robert H. Lurie Comprehensive Cancer
Center of Northwestern University
Michael A. Zevon, PhD
Roswell Park Cancer Institute
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* Donna B. Greenberg, MD
Massachusetts General Hospital Cancer Center
Carl B. Greiner, MD
UNMC Eppley Cancer Center at
The Nebraska Medical Center
Rev. George F. Handzo, MA, MDiv
Consultant
Laura Hoofring, MSN, APRN
The Sidney Kimmel Comprehensive Cancer
Center at Johns Hopkins
Paul B. Jacobsen, PhD
H. Lee Moffitt Cancer Center and Research
Institute at the University of South Florida
Sara J. Knight, PhD
UCSF Comprehensive Cancer Center
Kate Learson
Consultant
Michael H. Levy, MD, PhD
Fox Chase Cancer Center
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Psychiatry, psychology, including health behavior
Þ Internal medicine
‡ Hematology/Hematology oncology
£ Supportive Care including Palliative, Pain management,
Pastoral care and Oncology social work
Bone Marrow Transplantation
¥ Patient advocacy
† Medical oncology
Neurology/neuro-oncology
* Writing committee member
# Nursing
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NCCN Guidelines Panel Disclosures
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Version 1.2010, 01/22/10 © 2010 National Comprehensive Cancer Network, Inc. All rights reserved. These guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN.
Practice Guidelines
in Oncology – v.1.2010
Guidelines Index
Distress Management TOC
Discussion, ReferencesNCCN
®
Distress Management
Table of Contents
Key Terms:
NCCN Distress Management Panel Members
Summary of Guidelines Updates
Distress (DIS-1)
Definition of Distress in Cancer (DIS-2)
Standards of Care for Distress Management (DIS-3)
Overview of Evaluation and Treatment Process (DIS-4)
Expected Distress Symptoms (DIS-5)
Psychological/Psychiatric Treatment Guidelines (DIS-6)
Social Work Services (DIS-18)
Chaplaincy Services (DIS-19)
Recommendations for Implementation of Standards and Guidelines (DIS-26)
Institutional Evaluation of Standards of Care (DIS-27)
For End of Life Issues, See the NCCN Palliative Care Guidelines
For Cancer Pain, See the NCCN Cancer Pain Guidelines
Guidelines Index
Print the Distress Management Guideline
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Distress Management Assessment Tool (DIS-A)
Psychosocial Distress Patient Characteristics (DIS-B)
These guidelines are a statement of evidence and consensus of the authors regarding their views of currently accepted approaches to treatment.
Any clinician seeking to apply or consult these guidelines is expected to use independent medical judgment in the context of individual clinical
circumstances to determine any patient's care or treatment. The National Comprehensive Cancer Network makes no representations nor warranties
of any kind whatsoever regarding their content, use, or application and disclaims any responsibility for their application or use in any way. These
guidelines are copyrighted by National Comprehensive Cancer Network. All rights reserved. These guidelines and the illustrations herein may not
be reproduced in any form without the express written permission of NCCN. ©2010.
For help using these
documents, please click here
Discussion
References
Clinical Trials:
Categories of Evidence and
Consensus:
NCCN
All recommendations
are Category 2A unless otherwise
specified.
See
The
believes that the best management
for any cancer patient is in a clinical
trial. Participation in clinical trials is
especially encouraged.
NCCN
To find clinical trials online at NCCN
member institutions, click here:
nccn.org/clinical_trials/physician.html
NCCN Categories of Evidence
and Consensus
Version 1.2010, 01/22/10 © 2010 National Comprehensive Cancer Network, Inc. All rights reserved. These guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN.
Practice Guidelines
in Oncology – v.1.2010
Guidelines Index
Distress Management TOC
Discussion, ReferencesNCCN
®
Distress Management
Summary of the Guidelines Updates
Summary of changes in the 1.2010 version of the Distress Management Guidelines from the 2.2009 version include:
Throughout the Distress Management Guidelines, the terminology “Pastoral” was changed to “Chaplaincy”.
First bullet: Changed to, “...documented, and treated promptly at all stages of disease and in all settings.”
Fifth bullet: “Multidisciplinary institutional committees...” changed to “Interdisciplinary institutional committees...”
(Also for DIS-26 and DIS-27)
Sixth/Seventh bullet: “Pastoral caregivers” changed to “Certified chaplains”.
Last bullet: Changed to “Quality of distress management programs/services should be...”
Footnote “a”: “Nurse and clinical nurse specialist” changed to “Advanced practice clinicians”.
Family Problems: The panel added “Ability to have children”.
First column; Last bullet: After “Pain”, the panel added “Fatigue, sleep disorders, cognitive impairment.”
“Spiritual evaluation” changed to “Spiritual assessment” throughout the Chaplaincy Service algorithms.
Top pathway after “Severe depressive symptoms...” recommendation changed to “Refer to mental health professional for further
assessment, intervention, and follow-up.”
Second column: Recommendation changed to “Physician consultation to clarify treatment options and goals of care.”
Top pathway; After “Conflict not resolved”: Recommendation changed to “Ethics/ consultation”.
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“Pastoral evaluation” changed to “Chaplaincy assessment”.
� Palliative care
( )
( )
( )
( )
( )
( )
( )
( )
DIS-3
DIS-4
DIS-A
DIS-8
DIS-19
DIS-20
DIS-22
DIS-24
UPDATES
Note: All recommendations are category 2A unless otherwise indicated.
Clinical Trials: NCCN believes that the best management of any cancer patient is in a clinical trial. Participation in clinical trials is especially encouraged.
Version 1.2010, 01/22/10 © 2010 National Comprehensive Cancer Network, Inc. All rights reserved. These guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN.
Practice Guidelines
in Oncology – v.1.2010
Guidelines Index
Distress Management TOC
Discussion, ReferencesNCCN
®
Distress Management
Note: All recommendations are category 2A unless otherwise indicated.
Clinical Trials: NCCN believes that the best management of any cancer patient is in a clinical trial. Participation in clinical trials is especially encouraged.
Term “distress” was chosen because:
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It is more acceptable and less stigmatizing than “psychiatric,”
“psychosocial,” or “emotional”
Sounds “normal” and less embarrassing
Can be defined and measured by self-report.
“DISTRESS”
Definition of Distress in Cancer
(DIS-2)
DIS-1
Version 1.2010, 01/22/10 © 2010 National Comprehensive Cancer Network, Inc. All rights reserved. These guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN.
Practice Guidelines
in Oncology – v.1.2010
Guidelines Index
Distress Management TOC
Discussion, ReferencesNCCN
®
Distress Management
Note: All recommendations are category 2A unless otherwise indicated.
Clinical Trials: NCCN believes that the best management of any cancer patient is in a clinical trial. Participation in clinical trials is especially encouraged.
Distress is a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral,
emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer,
its physical symptoms and its treatment. Distress extends along a continuum, ranging from common
normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as
depression, anxiety, panic, social isolation, and existential and spiritual crisis.
DEFINITION OF DISTRESS IN CANCER
Standard of Care for Distress
Management (DIS-3)
DIS-2
Version 1.2010, 01/22/10 © 2010 National Comprehensive Cancer Network, Inc. All rights reserved. These guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN.
Practice Guidelines
in Oncology – v.1.2010
Guidelines Index
Distress Management TOC
Discussion, ReferencesNCCN
®
Distress Management
Note: All recommendations are category 2A unless otherwise indicated.
Clinical Trials: NCCN believes that the best management of any cancer patient is in a clinical trial. Participation in clinical trials is especially encouraged.
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Distress should be recognized, monitored, documented, and treated promptly at all stages of disease and in all
settings.
Screening should identify the level and nature of the distress.
All patients should be screened for distress at their initial visit, at appropriate intervals, and as clinically indicated
especially with changes in disease status (ie, remission, recurrence, progression).
Distress should be assessed and managed according to clinical practice guidelines.
Interdisciplinary institutional committees should be formed to implement standards for distress management.
Educational and training programs should be developed to ensure that health care professionals and certified
chaplains have knowledge and skills in the assessment and management of distress.
Licensed mental health professionals and certified chaplains experienced in psychosocial aspects of cancer should
be readily available as staff members or by referral.
Medical care contracts should include reimbursement for services provided by mental health professionals.
Clinical health outcomes measurement should include assessment of the psychosocial domain (eg, quality of life
and patient and family satisfaction).
Patients, families, and treatment teams should be informed that management of distress is an integral part of total
medical care and provided with appropriate information about psychosocial services in the treatment center and
the community.
Quality of distress management programs/services should be included in institutional continuous quality
improvement (CQI) projects.
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DIS-3
STANDARDS OF CARE FOR
DISTRESS MANAGEMENT
Version 1.2010, 01/22/10 © 2010 National Comprehensive Cancer Network, Inc. All rights reserved. These guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN.
Practice Guidelines
in Oncology – v.1.2010
Guidelines Index
Distress Management TOC
Discussion, ReferencesNCCN
®
Distress Management
Note: All recommendations are category 2A unless otherwise indicated.
Clinical Trials: NCCN believes that the best management of any cancer patient is in a clinical trial. Participation in clinical trials is especially encouraged.
Brief screening
for distress
(DIS-A):
Screening tool
Problem list
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EVALUATION
OVERVIEW OF EVALUATION AND TREATMENT PROCESS
TREATMENT
If
necessary
Referral
Primary
oncology team
+ resources available
Mental health
services
b
Social work
services
Chaplaincy
services
See Psychological/
Psychiatric
treatment
Guidelines (DIS-6)
See Social Work
Services (DIS-18)
See Chaplaincy
Services (DIS-19)
Refer to NCCN Guidelines Table
of Contents for Supportive Care
Guidelines.
a
bPsychiatrist, psychologist, advanced practice clinicians, social worker and certified chaplain.
See Psychosocial Distress Patient Characteristics (DIS-B).
DIS-4
See Management of Expected
Distress Symptoms (DIS-5)
Clinical evidence of
moderate to severe
distress or score of
4 or more on
screening tool
( )DIS-A
Clinical evidence
of mild distress
or score of less
than 4 on
screening tool
( )DIS-A
Clinical assessment
by primary oncology
team of oncologist,
nurse, social worker
for:
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High risk patients
Periods of
vulnerability
Risk factors for
distress
a
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Practical problems
Family problems
Spiritual/religous
concerns
Physical problems
Unrelieved physical
symptoms, treat as
per disease specific
or supportive care
guidelines
Follow-up
and
commun-
ication
with
primary
oncology
team
Version 1.2010, 01/22/10 © 2010 National Comprehensive Cancer Network, Inc. All rights reserved. These guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN.
Practice Guidelines
in Oncology – v.1.2010
Guidelines Index
Distress Management TOC
Discussion, ReferencesNCCN
®
Distress Management
DIS-5
EXPECTED DISTRESS
SYMPTOMS
INTERVENTIONS RE-EVALUATION
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Patients at increased risk of
vulnerability to distress
Signs and symptoms of
normal fear and worry of
the future and uncertainty
a
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Concerns about illness
Sadness about loss of
usual health
Anger, feeling out of
control
Poor sleep
Poor appetite
Poor concentration
Preoccupation with
thoughts of illness and
death
Disease or treatment side
effects
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Clarify diagnosis, treatment options
and side effects
Refer to appropriate patient
education materials (eg, NCCN
Treatment Summaries for Patients)
Educate patient that points of
transition may bring increased
vulnerability to distress
Acknowledge distress
Build trust
Ensure continuity of care
Mobilize resources
Consider medication to manage
symptoms:
Analgesics
Anxiolytics
Hypnotics
Antidepressants
Family support and counseling
Relaxation, meditation, creative
therapies (eg, art, dance, music)
Exercise
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Be sure patient understands
disease and treatment options
Support groups and/or individual
counseling
(
)
See NCCN Adult Cancer Pain
Guidelines
Monitor
functional level
and reevaluate
at each visit
Note: All recommendations are category 2A unless otherwise indicated.
Clinical Trials: NCCN believes that the best management of any cancer patient is in a clinical trial. Participation in clinical trials is especially encouraged.
Stable or
diminished
distress
Increased or
persistent
distress
See Distress
Score 4 or
moderate to
severe distress
(DIS-4)
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Continue
monitoring
and support
aSee Psychosocial Distress Patient Characteristics (DIS-B).
Version 1.2010, 01/22/10 © 2010 National Comprehensive Cancer Network, Inc. All rights reserved. These guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN.
Practice Guidelines
in Oncology – v.1.2010
Guidelines Index
Distress Management TOC
Discussion, ReferencesNCCN
®
Distress Management
Instructions: First please circle the number (0-10) that best
describes how much distress you have been experiencing in
the past week including today.
YES NO YES NOPractical Problems
Family Problems
Emotional Problems
Spiritual/religious
concerns
Physical Problems
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� �
� �
� �
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� �
� �
� �
� �
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� �
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� �
� �
� �
� �
� �
� �
� �
� �
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Child care
Housing
Insurance/financial
Transportation
Work/school
Dealing with children
Dealing with partner
Ability to have children
Depression
Fears
Nervousness
Sadness
Worry
Loss of interest in
usual activities
Appearance
Bathing/dressing
Breathing
Changes in urination
Constipation
Diarrhea
Eating
Fatigue
Feeling Swollen
Fevers
Getting around
Indigestion
Memory/concentration
Mouth sores
Nausea
Nose dry/congested
Pain
Sexual
Skin dry/itchy
Sleep
Tingling in hands/feet
Second, please indicate if any of the following has been a
problem for you in the past week including today. Be sure to
check YES or NO for each.
Other Problems: _________________________________________
________________________________________________________
SCREENING TOOLS FOR MEASURING DISTRESS
Extreme distress
No distress
10
9
8
7
6
5
4
3
2
1
0
10
9
8
7
6
5
4
3
2
1
0
DIS-A
Version 1.2010, 01/22/10 © 2010 National Comprehensive Cancer Network, Inc. All rights reserved. These guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN.
Practice Guidelines
in Oncology – v.1.2010
Guidelines Index
Distress Management TOC
Discussion, ReferencesNCCN
®
Distress Management
PERIODS OF INCREASED VULNERABILITY
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Finding a suspicious symptom
During workup
Finding out the diagnosis
Awaiting treatment
Change in treatment modality
End of treatment
Discharge from hospital following treatment
Stresses of survivorship
Medical follow-up and surveillance
Treatment failure
Recurrence/progression
Advanced cancer
End of life
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Note: All recommendations are category 2A unless otherwise indicated.
Clinical Trials: NCCN believes that the best management of any cancer patient is in a clinical trial. Participation in clinical trials is especially encouraged.
DIS-B
PATIENTS AT INCREASED RISK FOR DISTRESSd
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History of psychiatric disorder/substance abuse
History of depression/suicide attempt
Cognitive impairment
Communication barriers
Severe comorbid illnesses
Social problems
Family/caregiver conflicts
Inadequate social support
Living alone
Financial problems
Limited access to medical care
Young or dependent children
Younger age; woman
History of abuse (physical, sexual)
Other stressors
Spiritual/religious concerns
e
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c
d
For site-specific symptoms with major psychosocial consequences, see Holland, JC, Greenberg, DB, Hughes, MD, et al. Quick Reference for Oncology Clinicians:
The Psychiatric and Psychological Dimensions of Cancer Symptom Management. (Based on the NCCN Distress Management Guidelines). IPOS Press, 2006.
Available at .
From the NCCN Palliative Care Clinical Practice Guidelines in Oncology. Available at .
eCommunication barriers include language, literacy, and physical barriers.
www.apos-society.org
www.nccn.org
PSYCHOSOCIAL DISTRESS PATIENT CHARACTERISTICSc
Version 1.2010, 01/22/10 © 2010 National Comprehensive Cancer Network, Inc. All rights reserved. These guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN.
Practice Guidelines
in Oncology – v.1.2010
Guidelines Index
Distress Management TOC
Discussion, ReferencesNCCN
®
Distress Management
Note: All recommendations are category 2A unless otherwise indicated.
Clinical Trials: NCCN believes that the best management of any cancer patient is in a clinical trial. Partici