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Distress During
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NCCN Guidelines for Patients®:
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Distress During Cancer Care
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
About
These NCCN Guidelines for Patients are based on the NCCN Guidelines® for Distress Management (Version
2.2020, March 11, 2020).
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NCCN Guidelines for Patients®:
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
5
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
Distress During Cancer Care
Contents
6
About distress
12 Distress screening
20 Treatment for distress
26 Getting help
34 Words to know
35 NCCN Contributors
36 NCCN Cancer Centers
38
Index
6
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
1
About distress
7
Distress symptoms
8
Causes and risk factors
10 Triggers
11
Impact on life
11 Review
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
1 About distress
Distress symptoms
Everyone with cancer has some distress
at some point in time. Distress is normal.
Read this chapter to learn about the
symptoms of distress and when distress
is likely to occur.
Distress symptoms
Distress is an unpleasant experience of a
mental, physical, social, or spiritual nature.
It can affect the way you think, feel, or act.
Distress is normal during cancer care, but it
may make it harder to cope with cancer.
Distress ranges from mild to extreme levels. It
can consist of common feelings like sadness,
fear, and helplessness. Higher levels of distress
can cause problems in one or more areas of
life. It can affect a person’s self-care, social life,
mood, or faith.
Everyone with cancer has some distress
at some point in time. It is normal to feel
sad, fearful, and helpless. Distress is to be
expected.
There are many symptoms of distress. Distress
symptoms differ between people. They can
change over time. Some symptoms of distress
are listed in Guide 1.
Some symptoms of distress have other causes,
too. An example is poor sleep. Poor sleep may
be related to one or more factors, such as pain,
heartburn, and medication.
Guide 1
Examples of distress symptoms
Sadness
Fear, worry, helplessness
Anger, feeling out of control
Concerns about illness and treatment
Worries about paying bills and costs of living
Questioning your faith, your purpose, the
meaning of life
Pulling away from too many people
Concerns about taking care of others, such as
a child or parent
Poor sleep, appetite, or concentration
Depression, anxiety, panic
Frequent thoughts of illness or death
You just can’t imagine how much
fear and anxiety builds up.
– Dan
Survivor, Non-Small Cell Lung
Cancer
“
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
1 About distress
Causes and risk factors
Causes and risk factors
There isn’t just one cause of distress. The
cause of distress differs between people. For
example, some people may be distressed from
having severe side effects from treatment.
Other people may be distressed from the
amount of money needed to pay their bills.
Even if you have been wise with your money,
the costs related to cancer can add up.
Anyone can become distressed, but some
people are more likely to than others. A risk
factor is anything that increases the chance of
an event. There is a wide range of risk factors
for distress. Some of these risk factors are
listed in Guide 2.
Health-related factors
People with uncontrolled symptoms are more
likely to be distressed. Some people have
symptoms from the cancer, from the cancer
treatment, or both. If symptoms are severe or
long-lasting, the chance of becoming distressed
increases.
Certain medical conditions can lead to distress.
An example is having cancer and another
severe illness. Having cognitive impairment,
like poor memory, may make dealing with
cancer very hard. Another example is the link
between depression and some cancers, such
as pancreatic and head and neck cancers.
Access to care
Having limited access to health care can also
lead to distress. Some people may not have
health insurance or not enough insurance.
Others may need to travel far to see a health
provider. Some people have a hard time finding
a health provider who meets their needs.
Guide 2
Risk factors for distress
Distress is more likely in people who:
Have uncontrolled symptoms
Have a severe illness in addition to cancer
Have cognitive impairment
Have a cancer that is linked to depression
Have limited access to health care
Have money problems
Are younger in age
Have spiritual or religious concerns
Are unable to communicate as needed
Have family conflicts
Lack social support
Live alone
Live in a new country (immigration)
Don’t have a stable place to live
Have younger or dependent children
Have suffered trauma like physical or sexual
abuse
Have attempted suicide
Have had a substance use disorder or are
currently misusing alcohol or drugs
Have had a mental disorder like major
depression or generalized anxiety disorder
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
1 About distress
Causes and risk factors
Financial factors
Money may get even tighter during cancer care.
There may be less money due to travel costs,
insurance co-payments, and missing work. With
less money, the chance of becoming distressed
increases.
Personal factors
Personal risk factors for distress include being
young. Younger people may be very shocked to
learn that they have cancer. It may be too much
to deal with cancer and everyday life.
Some people have concerns related to their
religious faith or spirituality. Their concerns may
be long-standing or new. These concerns put
people at risk for being distressed.
Social factors
Distress is more likely when there are problems
with communication. Health providers may use
words that their patients don’t know. Some
people with cancer have trouble expressing
their needs. Contacting health providers may
not be easy.
Family conflict, lack of support, or living
alone may increase the burden of having
cancer. Unstable housing or the challenges of
immigration may add to stress.
Children are an important responsibility. Caring
for children while dealing with cancer can be
very hard. People with cancer who care for
children are more likely to be distressed.
Mental health factors
Poor mental health before cancer is linked to
distress after cancer. Past trauma can affect
mental well-being. It increases the risk for
distress during cancer care. Trauma includes
physical, sexual, verbal, or emotional abuse.
A past suicide attempt is linked to distress
among people with cancer. Suicide can stem
from deep feelings of hopelessness. These
feelings may resurface during cancer care.
People who have had a mental health
disorder (or mental illness) are more likely to
be distressed during cancer care. Common
mental health disorders include substance
use disorders, mood disorders, and anxiety
disorders.
† Substance use disorders are defined by
problems caused by the use of alcohol or
drugs.
† Symptoms of mood disorders are
depression, mania, or both.
† Symptoms of anxiety disorders are
ongoing and intense worry, fear, or panic.
On a daily basis, I come across
patients who are being absolutely
drained of the resources they need.
– Dr. Fahd
Oncologist
“
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
1 About distress
Triggers
Triggers
Distress can occur at any point in time.
However, there are times when being
distressed is more likely. Guide 3 includes a list
of times when distress is more likely.
Testing
You may become distressed when getting
tested. An example is being distressed when
getting tests for a symptom or lump. After
getting tested, you may need to wait for the
results. Waiting for test results can be hard.
The first response to learning of a cancer
diagnosis is often shock. You may also be
worried, fearful, or sad. Further testing may be
needed to learn more about the cancer you
have.
When cancer appears cured or well-controlled,
people get tests on a regular basis. Going to
check-up visits and waiting for test results can
be stressful. Distress is common if the cancer
returns or worsens.
Treatment
Waiting for treatment to start can trigger
distress. Cancer treatment may cause
distressing health problems (that is,
complications and side effects). Distress is also
common after learning that treatment didn’t
work.
Transitions in care
Transitions in care can also lead to distress.
Examples of a transition include being
discharged from the hospital or finishing all
treatment. Shifting from frequent treatment
visits to less frequent follow-up visits is a big
change.
Guide 3
Triggers of distress
Distress is likely to start or worsen when:
A new symptom prompts testing
Being tested for cancer
Learning the diagnosis
Learning the cancer is advanced
Learning you have a genetic risk for cancer
Waiting for treatment to start
Symptoms get worse
Having a treatment-related complication
Being admitted to or discharged from a
hospital
Starting another type of treatment
Learning that treatment didn’t work
Finishing treatment
Receiving follow-up care and cancer tests
Learning the cancer returned or worsened
Starting end-of-life care
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
1 About distress
Impact on life | Review
Impact on life
In this section, some of the negative effects of
distress are described. These negative effects
show why distress screening and treatment are
so important.
By definition, being distressed isn’t
pleasant. Feeling distressed doesn’t make
coping with cancer any easier. You are stressed
enough with learning about cancer, getting
cancer care, and doing your everyday duties.
Distress may affect how well you function.
Distress can interfere with sleep. You might
sleep less or more than normal. Distress may
lessen your ability to focus. You may need to
ask people to repeat what they said because
you lost track. Distress may affect how well
you relate to people. You may pull away from
others. If you have children, you may have
trouble taking care of them.
Distress may interfere with your health
decisions or actions. People who are
distressed are less likely to take their medicines
as their doctor prescribed. They may also have
trouble making treatment decisions and be less
likely to exercise and quit smoking.
Distressed people are also less likely to go
to follow-up visits. This can lead to health
problems followed by even more visits to the
doctor’s office and emergency room.
Distress may worsen your health. Distress
leads to poorer quality of life. It may even have
a harmful impact on your length of life.
Poor mental health can further worsen from
distress during cancer care. At high levels,
distress can result in a mental health disorder.
Review
† Distress is normal, common, and
expected. Common symptoms are
sadness, fear, and helplessness.
† Distress ranges from mild to extreme
levels. Everyone with cancer has some
level of distress at some point in time.
† Some people are more likely to be
distressed than others. People who have
uncontrolled symptoms, money problems,
lack of support, or a history of mental
illness are likely to be distressed.
† There will be times when being distressed
is more likely. A change in your health,
treatment, or health providers can trigger
distress. Distress is common after learning
the cancer has returned or worsened.
† Being distressed makes it harder to cope
with cancer. It can limit how well you
function. Distress can also lead to worse
physical and mental health.
It’s hard to deal with all of the
things that happen at once, and
not to just collapse and worry and
stress.
– Pauline
Wife of a Cancer Survivor
“
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
2
Distress screening
13 Screening tools
16 Screening results
16 Referral to experts
19 Benefits of screening
19 Review
13
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
2 Distress screening
Screening tools
Assessing distress is a key part of
cancer care. This chapter describes the
screening process for distress and who
can help you. Distress screening, when
paired with getting help, improves lives.
Screening tools
A screening tool is a short assessment for a
condition. For distress, screening tools prompt
you to respond to one or more statements or
questions. Screening tools are often paper-
based but are also given via hand-held smart
devices, interactive voice responses, and
internet-based programs.
Distress screening tools have been tested in
research studies. They have been found to
work well for detecting who is distressed and
pinpointing people’s needs.
NCCN Distress Thermometer
and Problem List
The NCCN Distress Thermometer and Problem
List is a well-known screening tool among
cancer care providers. It has been shown in
many studies to work well.
The Distress Thermometer measures distress
on a 0 to 10 scale. To report your distress,
circle the number that matches your level of
distress in the past week.
The Problem List includes problems from
5 areas of life: practical, family, emotional,
spiritual/religious, and physical problems.
The Problem List can be changed to fit the
hardships of a particular group of people.
The Problem List will help your cancer care
team learn what is causing your distress. Your
team will ask better follow-up questions. You
will be referred to the right help if needed.
Ideally, you would be screened for distress at
every health care visit. You should be screened
for distress at time points when distress is
likely (for example, at diagnosis). If you aren’t
screened for distress at appointments, you can
show your team your responses to the NCCN
Distress Thermometer and Problem List that
are on the next page.
I talk with people every day who
are in a place of despair. When
they call us, they’ve usually just
experienced a one-two punch. First,
they’ve been told they have cancer.
Second, after receiving encouraging
news that there is medication that
can potentially save their lives,
they are devastated to discover the
out-of-pocket cost of the medication
is beyond their financial means,
because insurance won’t pay the
full amount.
– Fran
Patient Care Specialist
“
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
2 Distress screening
Screening tools
NCCN Distress Thermometer
Distress is an unpleasant experience of a mental, physical, social, or spiritual nature. It
can affect the way you think, feel, or act. Distress may make it harder to cope with having
cancer, its symptoms, or its treatment.
Instructions: Please circle the number (0–10) that best describes how much distress you
have been experiencing in the past week including today.
10
9
8
7
6
5
4
3
2
1
0
Extreme
distress
No distress
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
2 Distress screening
Screening tools
Problem List

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.
Yes No
Practical Problems
 
Child care
 
Food
 
Housing
 
Insurance/financial
 
Transportation
 
Work/school
 
Treatment decisions



Family Problems
 
Dealing with children
 
Dealing with partner
 
Ability to have children
 
Family health issues



Emotional Problems
 
Depression
 
Fears
 
Nervousness
 
Sadness
 
Worry
 
Loss of interest in
usual activities
 
Spiritual/religious concerns
Yes No
Physical Problems
 
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
 
Substance use
 
Tingling in hands/feet
Other Problems: _______________________________________________________________
_____________________________________________________________________________
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
2 Distress screening
Screening results | Referral to experts
Screening results
Distress screening is usually fast. A member of
your cancer care team will discuss the results
with you. Your results will be used to get you
the help you need.
Some types of distress may be managed by
your cancer care team. Your team has a wide
range of knowledge and skills. For some types
of distress, they may refer you to people with a
different set of knowledge and skills. After you
complete a screener of distress, a member of
your team may:
† Assess your distress further
† Treat ongoing physical symptoms
† Manage mild distress symptoms
† Refer you to experts in distress
Referral to experts
There are providers who have completed
special training for treating distress. Your
cancer care team may refer you to one or more
of these experts based on your screening
results. In this section, some of the experts in
distress are described. Their qualifications and
the issues they treat are explained.
Chaplains
You may mark on a screening tool that you
have spiritual or religious concerns. Many
cancer centers have a chaplain on staff. If not,
your cancer care team will likely know of one
in the community. Many distressed people are
interested in meeting with a chaplain.
Many chaplains are certified and have
finished a specific course of training to provide
chaplaincy services. They are certified as either
board-certified chaplains or associate certified
chaplains.
Chaplains help people of any faith or no faith.
They provide care for issues like:
† Conflict between people over beliefs
† Conflicts between beliefs and treatment
† Concerns or needs relating to faith,
purpose, or meaning of life
† Concerns about dying or the afterlife
† Grief, guilt, and forgiveness
† Loneliness and self-worth
Hope is a huge part of the cancer
process. Because, if you lose that,
you don’t have the inner strength
you need to fight.
– Kris
Survivor, Multiple Myeloma
“
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
2 Distress screening
Referral to experts
Social workers
Social workers help people cope with life
challenges. They have earned either a
bachelor’s or master’s degree in social work.
Some go on to earn a doctoral degree.
Social workers can choose a specific area of
practice. Oncology social workers provide a
range of services to the cancer community.
Clinical social workers are mental health
professionals. They must obtain a state license
to practice.
Social workers provide help for practical and
psychosocial problems, such as:
† Housing, food, and transportation
†
Insurance and bills
† Assistance with self-care and dependent
care
† Treatment decisions and advance
directives
† Grief, loss, and adjusting to changes in
one’s health and body
† Anxiety, trauma, depression, and thoughts
of suicide
† Family, social, and cultural issues
Psychologists
Psychologists are mental health professionals.
Most psychologists have a doctoral degree in
psychology. The two doctoral degrees that can
be earned are a PhD and PsyD in psychology.
All psychologists complete an internship. Some
psychologists pursue more training in a post-
doctoral fellowship, obtain board certification, or
both.
There are different fields of psychology.
Psychologists who provide clinical services
include clinical psychologists, counseling
psychologists, health psychologists,
neuropsychologists, and school psychologists.
A state license is required to provide clinical
services. In some states, psychologists can
prescribe medications for mental health after
obtaining the proper education, training, and
state certification.
Depending on their training, psychologists
provide treatment for the following:
† Health issues, such as pain, weight, sleep,
sex, and taking medications as prescribed
† Cognitive problems, such as dementia and
chemo brain
† Mood and anxiety problems, such as
depression, panic, and worry
† Substance use, such as drugs, alcohol,
and smoking
† Thoughts of suicide
† Relationship issues, such as caregiving
strains and social conflicts
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NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
2 Distress screening
Referral to experts
Psychiatrists
Psychiatrists are medical doctors who
specialize in mental health. They are experts in
how the body and mind affect each other. They
are able to assess both physical and mental
health.
Psychiatrists have either an MD or DO degree.
They obtain a state license to practice and
complete a residency program in psychiatry.
Most become board-certified in psychiatry.
Psychiatrists can obtain more training and
become certified in a particular area. These
areas include child and adolescent psychiatry,
geriatric psychiatry, addiction psychiatry,
and consultation-liaison psychiatry. Some
consultation-liaison psychiatrists specialize in
working with cancer patients.
Psychiatrists are trained to treat mental,
emotional, and addictive disorders. Some of
the common disorders treated by psychiatrists
include depression, general anxiety, bipolar,
panic, psychotic, eating, and substance use
disorders. Psychiatrists may be particularly
helpful when mental disorders:
† Are hard to diagnose,
† Occur with physical conditions,
† Require medication to manage,
† Need treatment in a hospital,
† Occur suddenly or over a long period of
time, or
† Are not responding to standard treatment.
Nurses
There are many types of nurses who care for
people with cancer. A registered nurse (RN) is
the most common type. RNs have earned at
least an Associate’s degree or a diploma from
a hospital-based program. They need a state
license to practice. Some RNs go on to earn a
master’s or doctoral degree in nursing.
Another type of nurse is an advanced practice
registered nurse (APRN). An APRN is an RN
who has earned at least a master’s degree
in nursing. There are four types of APRNs:
nurse practitioner (NP), clinical nurse specialist
(CNS), certified nurse anesthetist, and certified
nurse midwife. An APRN state license is
needed to practice. APRNs can prescribe
medication.
Nurses can also obtain certification in specialty
areas. Examples of certification include
oncology and psychiatry. Oncology nurses
provide a high quality of care to people with
cancer. Psychiatric nurses are mental health
experts.
Nurses are on the front line of cancer care.
They are often the first to detect that a person
is distressed. They may be the one to screen
you for distress. Across the many types of
nursing, nurses provide help for a wide range of
problems related to distress, such as:
† Practical matters like needing a ride to
appointments
† Lack of knowledge about cancer
† Physical symptoms and illnesses
† Complex health care systems
† Mental health symptoms and disorders
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NCCN Guidelines for Patients®:
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2 Distress screening
Benefits of screening
Benefits of screening
If paired with getting help, distress screening
can yield major benefits. Some of the benefits
of distress screening are listed next.
Detects people in distress
Without standard screening, many distressed
people are not identified and don’t get the
help they need. Often, doctors don’t ask, and
patients don’t tell their doctors about their
distress. Screening tools empower doctors to
ask about distress. They also empower people
with cancer to share how they are feeling.
In-depth evaluation
You may receive an in-depth evaluation
depending on what is distressing you. An
example is memory testing if you say your
memory is a big problem. Another example is
a clinical assessment for high distress about
sexual problems or pain. A clinical assessment
may include:
† An interview
† Survey
† Health or brain function tests
Better distress management
Early distress screening leads to timely
management of distress. A study of routine
screening showed that distressed people who
were referred for help were less distressed
3 months later. Better management of distress
in turn improves self-care and health outcomes.
Improved self-care
Treating distress makes it easier to stay on
track with cancer treatment. You will be less
likely to miss doctor’s visits and skip taking
your medicines. You will likely need to contact
your doctor less often. When not distressed,
communication with your treatment team will be
easier and better.
Improved health outcomes
Treating distress early helps to prevent
emotional problems from becoming severe. If
distress is treated, you likely won’t be angry
all the time or be intensely angry. Severe
anxiety and depression may also be avoided.
In addition to better mental health, treating
distress improves health-related quality of life
and may help your physical health.
Review
† A screening tool for distress is a brief
survey of your perceived distress.
† The NCCN Distress Thermometer and
Problem List were created by NCCN
experts to assess the level and nature of
your distress.
† Your cancer care team will treat mild
distress or refer you to experts in distress.
† Experts in distress have obtained
education, training, and credentials
to conduct evaluations and provide
treatment. Depending on your needs,
you may be referred to a chaplain,
social worker, psychologist, psychiatrist,
psychiatric nurse, or another mental health
provider.
† Distress screening that is paired with
getting help can improve well-being and
health.
20
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
3
Treatment for distress
21 Cancer care team
22 Chaplaincy care
22 Social work and
counseling services
23 Mental health services
25 Review
21
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
3 Treatment for distress
Cancer care team
There is a wide range of help for
distress. This chapter is an overview of
the common types of help for people
with cancer.
Cancer care team
The cancer care team often manages mild
distress. Mild distress is also called expected
distress. It includes worry about the future
and concerns about treatment. Your team can
manage mild distress by:
† Explaining distress is normal and what to
expect
† Providing education on cancer and its
treatment
† Discussing advance care planning
† Prescribing medication
† Preventing gaps in care between health
care providers
† Teaching new or better ways to cope
† Sharing information about resources at
your cancer center and in your community
Cancer education
Having cancer is very stressful. One stressor
is the need to learn about cancer care. Your
care team can answer questions and direct
you to trusted educational resources. Learning
from trusted educational resources can be very
helpful and reduce stress.
There may be a learning center at your cancer
center. The learning center may have printed
materials or have access to online resources.
Health educators can help you find trusted
information.
Your cancer center may have a patient
navigator program. Patient navigators educate.
They can explain your plan of care. They can
tell you what to expect at appointments and
from treatment. They can give you educational
materials.
NCCN has a growing library of NCCN
Guidelines for Patients®. These resources are a
good starting point from which to learn the best
options for cancer care. Your cancer care team
can provide more information to help you make
treatment decisions. Visit NCCN.org/patients
for resources on cancer screening, cancer
treatment, and supportive care.
22
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
3 Treatment for distress
Chaplaincy care | Social work services
Chaplaincy care
Many people with cancer find spirituality or
religion helpful. People use spiritual or religious
resources to cope with cancer. Receiving
spiritual support may improve quality of life and
satisfaction with care.
A chaplain can help whether you have strong
beliefs, different beliefs, conflicted beliefs, or no
beliefs. Chaplains provide a range of services
including:
† Spiritual or existential support to foster
peace and comfort
† Counseling in line with your faith or beliefs
† Guidance to discover spirituality or
purpose
† Prayer
† Guided meditation
† Spiritual or religious rituals
† Liaison between patients and spiritual
communities
† Referral to health care providers
Social work and
counseling services
Social workers provide services for practical or
psychosocial problems. Patient navigators and
case managers may be of help, too. Practical
problems commonly relate to illness, food,
money, work, school, language, and caregiving.
Psychosocial problems include mental and
social effects of the cancer.
People with practical and psychosocial
problems are often helped by social work
and counseling services. Otherwise, some of
these problems may be addressed by mental
health services, which are described in the next
section. Social workers address practical and
psychosocial problems by:
† Connecting patients to resources
† Advocating on behalf of patients
† Teaching patients and families
† Leading support groups
† Counseling patients, couples, and families
† Contacting protective services
† Giving a referral to a mental health
provider
† Giving a referral to a chaplain
I worried how we would survive
this financially.
– Carol
Survivor, Multiple Myeloma
“
23
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
3 Treatment for distress
Mental health services
Mental health services
There are many types of mental health
providers. Examples include clinical
social workers, psychologists, advanced
practice clinicians, psychiatric nurses, and
psychiatrists. The work of these providers
overlaps, but their expertise varies. You
should be referred to a provider who is a
good fit for your needs.
Evaluation
The first step of care is often an evaluation
to assess the problem. Evaluations differ
between people based on the type of
distress. You may be evaluated for:
† Changes in behavior
† Pain, fatigue, or lack of sleep
† Sexual health
† Current and past mental health
† Treatment history
† Medical causes
† Alcohol and drug use
† Cognitive problems
† Body image
† Suicidal thoughts and plan
† Safety
Treatment
There are many types of mental health
treatment. Based on the evaluation,
your provider will make a treatment plan
tailored to you. Mental health treatment
works well to reduce distress and improve
quality of life among people with cancer.
Counseling and
psychotherapy
Some people think of psychotherapy and counseling
as the same thing. Both help people feel better, solve
problems, and achieve life goals. Both are sometimes
called “talk therapy.”
Many providers think of them as two distinct
treatments. Counseling is often thought as short-
term help for outward behaviors. In contrast,
psychotherapy is in-depth, sometimes long-term,
help that addresses the inner person. The differences
between the two treatments have lessened over time.
Counseling often focuses on a specific issue.
Examples include adjusting to illness, grief, and
stress management. The methods used in counseling
vary based on the issue.
Psychotherapy can help with a broad range of
mental health needs. Cognitive behavioral therapy
(CBT) focuses on changing thoughts and actions
that contribute to poor mental health. It can help with
depression, anxiety, pain, and fatigue among people
with cancer.
Supportive psychotherapy uses a flexible approach
to meet people’s changing needs. It is widely
used to help people with cancer. Sub-types of this
psychotherapy include supportive-expressive,
cognitive-existential, and meaning-centered
psychotherapy.
24
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
3 Treatment for distress
Mental health services
Types of mental health treatment include:
† Watchful waiting on level of distress
† Education on mental health issues
† Psychotherapy or counseling; also
called “talk therapy”
† Cognitive rehabilitation to improve
brain functioning
† Behavioral management
† Suicide prevention
† Psychiatric medication
† Medications for drug detoxification
and to prevent relapse
† Electroconvulsive therapy
† Hospital care, residential treatment,
and specialized programs
† Exercise
†
Integrative (or complementary)
therapy like yoga or meditation
Psychiatric medications
Psychiatric (or psychotropic) medications are drugs
that improve mental health. Psychiatric medications
are grouped by how they are commonly used.
Antidepressants are commonly used to treat
depression. Two key features of depression are:
1) feeling down or irritable; and 2) losing interest in
things that you used to like. Antidepressants are also
used to treat anxiety and certain physical problems like
pain.
Anxiolytics may be used with psychotherapy to treat
anxiety. Key features of anxiety include severe fear or
worry, panic attacks, and strong behavioral impulses.
Mood stabilizers treat bipolar-related disorders.
The key feature of bipolar disorders is an episode of
elevated mood called mania.
Antipsychotics treat psychotic disorders. Features
of psychotic disorders include perceiving unreal
sensations, fixed false beliefs, and disorganized
thinking.
Antipsychotics treat other health conditions, too. They
may be used to treat anxiety if other medications
did not work. Antipsychotics are also used to treat
delirium—a short-term disturbance in mental abilities.
Delirium occurs in people with advanced cancer. It can
also be triggered by some types of medicines.
25
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
3 Treatment for distress
Review
Review
† The cancer care team often treats mild
distress.
† A chaplain can help people of any faith
or no faith. Chaplains provide support,
counseling, and guidance to people in
need.
† Social workers provide help for practical
or psychosocial problems. These
problems may be relieved by learning new
information or skills, counseling, attending
support groups, or community resources.
† Mental health providers perform
evaluations to inform treatment planning.
Common mental health services include
education, psychotherapy, and prescribing
medications.
Initially, you’re doing everything
you can to survive. You can kind of
get used to that. You’re constantly
fighting. Then, after a while, you
get a chance to pop your head
above water for a little bit and look
around. You see all the people who
are trying to throw you flotation.
People trying to help you keep
your head above water and not
sink. People yelling out words of
encouragement to you. And so …
you keep going.
– Steve
Brother of a Cancer Survivor
“
26
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
4
Getting help
27 Standard of care
27 Questions to ask
32 Websites
32 Review
27
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
4 Getting help
Standard of care | Questions to ask
Every distressed person with cancer
should receive help. This chapter gives
a history of how distress management
has become a standard of cancer care.
It also provides a list of questions and
websites for you to use.
Standard of care
Everyone with cancer has some distress
at some point in time. However, distressed
people with cancer have been underserved
for decades. In 1997, NCCN made a
groundbreaking step by forming a panel to
develop treatment guidelines for distress. The
first guidelines for distress were completed in
1999. This book is based on the most current
version of the guidelines.
The National Academy of Medicine (NAM;
formerly called the Institute of Medicine [IOM])
is a nonprofit group that provides advice to the
United States. Its aim is to help people make
good health decisions. The NAM is greatly
respected among health care professionals.
In 2007, the IOM released a report called
Cancer Care for the Whole Patient. In this
report, a treatment model for distress was
proposed. The model is based on the work of
the NCCN Panel. It includes routine distress
screening, treatment planning, referrals to
experts in distress, and re-evaluation. The
IOM report made distress management a new
standard of quality cancer care.
The Commission on Cancer is a program of
the American College of Surgeons. It grants
accreditation to cancer centers that apply and
meet their standards of quality cancer care.
In 2015, new standards went into effect for
cancer centers. These new standards included
distress screening.
This history is important to know. You should
expect to receive distress screening and help
at your cancer care visits. If your distress isn’t
addressed, ask for help.
Questions to ask
Ask your health care providers questions about
distress. Being informed will help you make
decisions. The questions on the next pages
are in regard to the care you read about in this
book. Feel free to use them or ask your own
questions.
It may help to prepare questions before your
visit. At the visit, repeat the answers given to
you to confirm what you heard. You can also
take notes. Many people bring their spouse,
partner, friend, or other family member for
support.
28
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
4 Getting help
Questions to ask
Questions to ask about distress
1. Is my symptom(s) part of being distressed?
2. Will my distress just go away in time?
3. How can you help me?
4. How can I help myself?
5. What help will my insurance cover?
29
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
4 Getting help
Questions to ask
Questions to ask about cancer
1. What type of cancer do I have? Will it grow fast?
2. What tests do I need? How often are these tests wrong?
3. What options do I have? What will happen if I do nothing?
4. What are the pros and cons of each option? What are the side effects of treatment?
What does each option require of me in terms of travel, time off, costs, and so forth?
5. What can be done to prevent or relieve side effects?
6. What are my chances that the cancer will return?
7. Are you board-certified? If yes, in what area? How many people like me have you
treated?
30
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
4 Getting help
Questions to ask
Questions to ask about spiritual care
1. What do chaplains do?
2. Are chaplains ministers or priests?
3. Can a chaplain help me if we’re not of the same faith or if I have no faith?
4. Can a chaplain help other family members?
Questions to ask about social work and counseling
1. What do social workers do?
2. Can you help me find a local support group?
3. Is there help for the high costs of cancer care?
4. Can you show me how to talk with my children, family, and friends?
5. How do I deal with people who are treating me differently?
6. How can counseling help with intimacy?
7. Can you help me get an advance directive?
31
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
4 Getting help
Questions to ask
Questions to ask about mental health services
1. What’s the difference between the different types of mental health providers?
2. What’s your expertise?
3. What are you testing me for? How long does testing take?
4. How will psychoeducation help me?
5. Will psychiatric medicine affect my cancer treatment? How long until the medicine works? What
are the side effects of psychiatric medicine? How long do I need to take psychiatric medicine?
6. How does talk therapy help with distress? How do I choose a therapist?
7. Is there proof that complementary therapy or exercise helps distress?
32
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
4 Getting help
Websites | Review
Websites
Distress is to be expected when facing cancer.
There are community resources that can help.
Free online information can be found at the
websites listed next.
Cancer information
Be the Match®
BeTheMatch.org/one-on-one
NCCN
MyCancerGuides.org
National Cancer Institute (NCI)
cancer.gov/resources-for/patients
The Leukemia & Lymphoma Society
lls.org/informationspecialists
Distress care
Alliance for Quality Psychosocial
Cancer Care
wholecancerpatient.org
American Psychosocial Oncology
Society
apos-society.org
Fertility
MyOncofertility.org
myoncofertility.org
NCCN
NCCN.org/patients
Spirituality
National Cancer Institute (NCI)
cancer.gov/cancertopics/pdq/supportivecare/
spirituality/Patient
Support services
CancerCare
cancercare.org
Cancer Support Community
cancersupportcommunity.org
Good Days
mygooddays.org
National Coalition for Cancer
Survivorship
canceradvocacy.org/resources/cancer-survival-
toolbox
Review
† Distress management is a new standard
of quality cancer care. Expect and ask for
help from your cancer care team.
† Ask your health care providers questions
about distress. Being informed will help
you make decisions.
† There are community resources that can
help. Many of these resources can be
found online.
Ü
34
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
Words to know
Words to know
APRN
Advanced practice registered nurse
CBT
Cognitive behavioral therapy
chaplain
A trained expert in providing spiritual care.
CNS
clinical nurse specialist
cognitive impairment
Trouble remembering, learning new things,
concentrating, or making decisions that affect
everyday life.
diagnosis
To identify a disease.
distress
An unpleasant experience of a mental,
physical, social, or spiritual nature.
IOM
Institute of Medicine
oncologist
A medical doctor who’s an expert in the
treatment of cancer.
NAM
National Academy of Medicine
NCCN®
National Comprehensive Cancer Network®
NP
Nurse practitioner
RN
Registered nurse
psychiatrist
A medical doctor who’s an expert in mental
health.
psychologist
A trained expert in the human mind and
behavior.
risk factor
Anything that increases the chance of an event.
screening tool
A short assessment for a condition.
side effect
An unplanned physical or emotional response
to treatment.
social worker
An expert in meeting people’s social and
emotional needs.
substance use disorder
Repeated use of alcohol, drugs, or tobacco that
causes major life problems.
35
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
NCCN Contributors
The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Distress Management,
Version 2.2020 were developed by the following NCCN Panel Members:
Michelle B. Riba, MD, MS/Chair
University of Michigan Rogel Cancer Center
Kristine A. Donovan, PhD, MBA/
Vice-Chair
Moffitt Cancer Center
Barbara Andersen, PhD
The Ohio State University Comprehensive
Cancer Center - James Cancer Hospital
and Solove Research Institute
IIana Braun, MD
Dana-Farber/Brigham and Women’s
Cancer Center
William S. Breitbart, MD
Memorial Sloan Kettering Cancer Center
Benjamin W. Brewer, PsyD
University of Colorado Cancer Center
Luke O. Buchmann, MD
Huntsman Cancer Institute
at the University of Utah
Molly Collins, MD
Fox Chase Cancer Center
Cheyenne Corbett, PhD
Duke Cancer Institute
Stewart Fleishman, MD
Consultant
Sofia Garcia, PhD
Robert H. Lurie Comprehensive Cancer
Center of Northwestern University
Donna B. Greenberg, MD
Dana-Farber/Brigham and Women’sCancer
Center| Massachusetts General Hospital
Cancer Center
Rev. George F. Handzo, MA, MD
Consultant
Laura Hoofring, MSN, APRN
The Sidney Kimmel Comprehensive
Cancer Center at Johns Hopkins
Chao-Hui Huang, PhD
O’Neal Comprehensive
Cancer Center at UAB
Pallavi Kumar, MD, MPH
Abramson Cancer Center
at the University of Pennsylvania
Robin Lally, PhD, MS, RN
Fred & Pamela Buffett Cancer Center
Sara Martin, MD
Vanderbilt-Ingram Cancer Center
Lisa McGuffey, PhD, JD
University of Wisconsin
Carbone Cancer Center
William Mitchell, MD
UC San Diego Moores Cancer Center
Laura J. Morrison, MD
Yale Cancer Center/Smilow Cancer Hospital
Shehzad K. Niazi, MD
Mayo Clinic Cancer Center
Megan Pailler, PhD
Roswell Park Comprehensive Cancer Center
Oxana Palesh, PhD, MPH
Stanford Cancer Institute
Francine Parnes, JD, MA
Patient Advocate
Janice P. Pazar, RN, PhD
St. Jude Children’s Research Hospital/
The University of Tennessee
Health Science Center
Laurel Ralston, DO
Case Comprehensive Cancer Center/
University Hospitals Seidman Cancer
Center and Cleveland Clinic Taussig
Cancer Institute
Jaroslava Salman, MD
City of Hope National Medical Center
Moreen M. Shannon-Dudley, MSW
Fred Hutchinson Cancer Research Center/
Seattle Cancer Care Alliance
Alan D. Valentine, MD
The University of Texas
MD Anderson Cancer Center
Jessica Vanderlan, PhD
Siteman Cancer Center at Barnes-
Jewish Hosptial and Washington
University School of Medicine
NCCN Staff
Susan Darlow, PhD
Oncology Scientist, Medical Writer
Jennifer Keller, MSS
Guidelines Layout Specialist
Nicole McMillian, MS
Guidelines Coordinator
NCCN Contributors
This patient guide is based on the NCCN Clinical Practice Guidelines in Oncology (NCCN
Guidelines®) for Distress Management. It was adapted, reviewed, and published with help from the
following people:
Dorothy A. Shead, MS
Director, Patient Information
Operations
Laura J. Hanisch, PsyD
Medical Writer/Patient
Information Specialist
Erin Vidic, MA
Medical Writer
Rachael Clarke
Senior Medical Copyeditor
Tanya Fischer, MEd, MSLIS
Medical Writer
Kim Williams
Creative Services Manager
Susan Kidney
Design Specialist
* Reviewed this patient guide. For disclosures, visit NCCN.org/about/disclosure.aspx.
*
*
*
*
*
36
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
NCCN Cancer Centers
NCCN Cancer Centers
Abramson Cancer Center
at the University of Pennsylvania
Philadelphia, Pennsylvania
800.789.7366 • pennmedicine.org/cancer
Fred & Pamela Buffett Cancer Center
Omaha, Nebraska
800.999.5465 • nebraskamed.com/cancer
Case Comprehensive Cancer Center/
University Hospitals Seidman Cancer
Center and Cleveland Clinic Taussig
Cancer Institute
Cleveland, Ohio
800.641.2422 • UH Seidman Cancer Center
uhhospitals.org/services/cancer-services
866.223.8100 • CC Taussig Cancer Institute
my.clevelandclinic.org/departments/cancer
216.844.8797 • Case CCC
case.edu/cancer
City of Hope National Medical Center
Los Angeles, California
800.826.4673 • cityofhope.org
Dana-Farber/Brigham and
Women’s Cancer Center
Massachusetts General Hospital
Cancer Center
Boston, Massachusetts
877.332.4294
dfbwcc.org
massgeneral.org/cancer
Duke Cancer Institute
Durham, North Carolina
888.275.3853 • dukecancerinstitute.org
Fox Chase Cancer Center
Philadelphia, Pennsylvania
888.369.2427 • foxchase.org
Huntsman Cancer Institute
at the University of Utah
Salt Lake City, Utah
877.585.0303
huntsmancancer.org
Fred Hutchinson Cancer
Research Center/Seattle
Cancer Care Alliance
Seattle, Washington
206.288.7222 • seattlecca.org
206.667.5000 • fredhutch.org
The Sidney Kimmel Comprehensive
Cancer Center at Johns Hopkins
Baltimore, Maryland
410.955.8964
hopkinsmedicine.org/kimmel_cancer_center
Robert H. Lurie Comprehensive
Cancer Center of Northwestern
University
Chicago, Illinois
866.587.4322 • cancer.northwestern.edu
Mayo Clinic Cancer Center
Phoenix/Scottsdale, Arizona
Jacksonville, Florida
Rochester, Minnesota
800.446.2279 • Arizona
904.953.0853 • Florida
507.538.3270 • Minnesota
mayoclinic.org/departments-centers/mayo-
clinic-cancer-center
Memorial Sloan Kettering
Cancer Center
New York, New York
800.525.2225 • mskcc.org
Moffitt Cancer Center
Tampa, Florida
800.456.3434 • moffitt.org
The Ohio State University
Comprehensive Cancer Center -
James Cancer Hospital and
Solove Research Institute
Columbus, Ohio
800.293.5066 • cancer.osu.edu
O’Neal Comprehensive
Cancer Center at UAB
Birmingham, Alabama
800.822.0933 • uab.edu/onealcancercenter
Roswell Park Comprehensive
Cancer Center
Buffalo, New York
877.275.7724 • roswellpark.org
Siteman Cancer Center at Barnes-
Jewish Hospital and Washington
University School of Medicine
St. Louis, Missouri
800.600.3606 • siteman.wustl.edu
St. Jude Children’s Research Hospital
The University of Tennessee
Health Science Center
Memphis, Tennessee
888.226.4343 • stjude.org
901.683.0055 • westclinic.com
Stanford Cancer Institute
Stanford, California
877.668.7535 • cancer.stanford.edu
UC San Diego Moores Cancer Center
La Jolla, California
858.657.7000 • cancer.ucsd.edu
UCLA Jonsson
Comprehensive Cancer Center
Los Angeles, California
310.825.5268 • cancer.ucla.edu
UCSF Helen Diller Family
Comprehensive Cancer Center
San Francisco, California
800.689.8273 • cancer.ucsf.edu
University of Colorado Cancer Center
Aurora, Colorado
720.848.0300 • coloradocancercenter.org
University of Michigan
Rogel Cancer Center
Ann Arbor, Michigan
800.865.1125 • rogelcancercenter.org
The University of Texas
MD Anderson Cancer Center
Houston, Texas
800.392.1611 • mdanderson.org
University of Wisconsin
Carbone Cancer Center
Madison, Wisconsin
608.265.1700 • uwhealth.org/cancer
UT Southwestern Simmons
Comprehensive Cancer Center
Dallas, Texas
214.648.3111 • utswmed.org/cancer
Vanderbilt-Ingram Cancer Center
Nashville, Tennessee
800.811.8480 • vicc.org
Yale Cancer Center/
Smilow Cancer Hospital
New Haven, Connecticut
855.4.SMILOW • yalecancercenter.org
37
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
Notes
Notes
38
NCCN Guidelines for Patients®:
Distress During Cancer Care, 2020
Index
Index
cancer education 20
chaplaincy 15, 21
Commission on Cancer 26
counseling 16, 21–24, 29
distress

causes and risks 8–9

effects 11
experts 15, 17–18, 26

symptoms 7–11, 15, 17

triggers 10
NCCN Distress Thermometer and Problem
List 13–15, 18
exercise 11, 23, 30
integrative therapy 23
National Academy of Medicine 26
nurse 17–18, 22
patient navigator 20–21
psychiatric medicine 30
psychiatrist 17–18, 22
psychologist 16, 18, 22
psychotherapy 22–24
screening 11, 13, 15 ,18, 20, 26

benefits 18

tools 13–14, 18
social worker 16, 18, 21–22, 24, 29
Ü
PAT-N-1263-0620
Distress During
Cancer Care
NCCN
GUIDELINES
FOR PATIENTS®
NCCN.org/patients – For Patients | NCCN.org – For Clinicians
2020
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