Distress in People With Cancer

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Tools to help measure distress

Sometimes it’s hard to talk about distress in a way that helps your cancer care team understand how much distress you are having and how it’s affecting you. There’s a distress tool (see the example below) that is much like a pain scale to help measure your distress.

The pain scale works like this: When asking about pain, the doctor or nurse might say, “How is your pain right now on a scale from 0 to 10, with 0 being no pain and 10 the worst pain you can imagine?” This has proved to be a helpful way to measure pain. A score above 5 is a sign of significant pain, and tells the cancer care team that the patient needs more help to manage it.

Some cancer teams measure distress in the same way, using a 0 to 10 scale. Just as with the pain scale, you are asked to choose the number from 0 to 10 that reflects how much distress you feel today and how much you felt over the past week. Ten is the highest level of distress you can imagine, and 0 is no distress. Most people can use this scale to rate their distress in a way that helps the cancer team. If your response is 4 or above, you likely have a moderate to high degree of distress. Your doctor or cancer team should find out more and offer some help with your distress.

Not only does this tool tell your team about your emotional health, but it also gives you a chance to talk and work out problems during your visit. Surveys done in cancer clinics have shown that up to 4 in 10 patients have significant levels of distress. You are not alone in your distress.

Another part of the distress tool is the “Problem List,” or a list of things that may be causing your distress. For this, you read through a list of common problems and mark possible reasons for your distress. This helps your doctor or nurse know whom you need to see to get help. The list of physical problems helps you remember those you should tell your treatment team about.

Distress screening tool: the Thermometer and the Problem List

Please circle the number (0-10) that best describes how much distress you have had during the past week, including today.

distress meter

Please read the list below. Have any of the following problems been a cause of your distress in the past week, including today? Be sure to check NO or YES for each.

    NO

    YES

 

    NO

    YES

 

    Practical problems

    Physical problems

    Housing

    Pain

    Insurance/financial

    Nausea

    Work/school

    Fatigue (feeling tired)

    Transportation

    Sleep

    Child care

    Getting around

 

    Bathing/dressing

    Family problems

    Breathing

    Dealing with partner

    Mouth sores

    Dealing with children

    Eating

 

    Indigestion

    Emotional problems

    Constipation

    Worry

    Diarrhea

    Fears

    Changes in urination

    Sadness

    Fevers

    Depression

    Skin dry/itchy

    Nervousness

    Nose dry/congested

 

    Tingling in hands/feet

    Spiritual/religious

    concerns

    Feeling swollen

     

    Memory or concentration

     

    Appearance

     

    Sexual

Other problems:
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________

Once your cancer care team knows that you are having problems in certain areas, they can work with you to address those concerns. A nurse will often talk with you in more detail after you have filled out the distress scale and Problem List. The nurse may ask you more questions and can refer you to other health care professionals, like a social worker, nutritionist, or chaplain, if needed.

A social worker can help with the practical, family, and emotional issues. A mental health counselor, psychologist, psychiatrist, psychiatric social worker, or psychiatric nurse may also be able to help you with painful emotions. A pastoral care counselor or chaplain is skilled in helping you with your spiritual concerns. (These professionals and what they do are described in more detail in the “Counseling services you may need” section.) If your distress is mild, the cancer team may choose to work with you themselves, or recommend a support group.

Another way to help you decide whether you need extra support for your distress is to use a questionnaire. A cancer treatment center may use something like the one here when you first start going there for treatment.

“Do I Need Professional Support?” Self-Assessment Questionnaire for Patients

The following questionnaire may help you figure out whether professional counseling would be helpful to you. Every patient has some of these symptoms. Circle the answer that fits best for you, from 1 (not at all) to 5 (all the time) or one of the numbers in between. There are no right or wrong answers. Answer the questions honestly. If you try to cover up how you feel, you might not get the help you need.

During the past 2 weeks:

I have felt anxious or worried about cancer and the treatment I am receiving.

Not at all

1

2

3

4

5

All the time

I have felt depressed or discouraged.

Not at all

1

2

3

4

5

All the time

I have been irritable or unusually angry, and I have not controlled it well.

Not at all

1

2

3

4

5

All the time

My sleeping habits have changed.

Not at all

1

2

3

4

5

All the time

I have noticed a change in my appetite.

Not at all

1

2

3

4

5

All the time

I have had trouble focusing at work or at home, or on routine things such as reading the newspaper or watching television.

Not at all

1

2

3

4

5

All the time

Cancer and its treatment have interfered with my daily activities.

Not at all

1

2

3

4

5

All the time

Cancer and its treatment have interfered with my family or social life.

Not at all

1

2

3

4

5

All the time

Cancer and its treatment have interfered with my sex life.

Not at all

1

2

3

4

5

All the time

Pain and discomfort have caused me to limit my activities.

Not at all

1

2

3

4

5

All the time

Cancer has caused physical, emotional, or financial hardship for me.

Not at all

1

2

3

4

5

All the time

Cancer and its treatment have caused changes in how I look, and this concerns me.

Not at all

1

2

3

4

5

All the time

I have had trouble coping with the stress I have been having.

Not at all

1

2

3

4

5

All the time

My quality of life during the past 2 weeks has been:

Excellent

1

2

3

4

5

Very poor

If you find that many of your answers are 4s or 5s, you may be having serious distress and should think about talking with a counselor or other mental health professional.

Source: Developed by the Department of Psychosocial Resources, Tom Baker Cancer Centre, and the Division of Psychosocial Oncology, Department of Oncology, Faculty of Medicine, University of Calgary, Calgary, Alberta, Canada. Derived in part from the Functional Living Index: Cancer, and from the EORTC Core Quality of Life Questionnaire. Published with permission.

Last Medical Review: 03/09/2012
Last Revised: 03/09/2012