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Table 1 Patient questionnaire measures

From: Design of, and enrollment in, the palliative care communication research initiative: a direct-observation cohort study

Question

Response

Construct

Source

a1. Considering all parts of your life – physical, emotional, social, spiritual, and financial – over the past two days, how would you rate your quality of life?

0-10 scale

QOL- Global

McGill Quality of Life Questionnaire, Global item [61, 62]

Very Bad (0)

Excellent (10)

2. Over the past two days, how much have you been bothered by physical problems such as pain, upset stomach or difficulty breathing?

Not at all

QOL- Physical

Modified from Dartmouth COOP “Feelings” Chart [43]

Slightly

Moderately

Quite a bit

Extremely

3. Over the past two days, how much have you been bothered by emotional problems such as feeling anxious, depressed, irritable, or downhearted and blue?

Not at all

QOL- Emotional

Dartmouth COOP “Feelings” Chart [43]

Slightly

Moderately

Quite a bit

Extremely

4. Over the past two days, how much have you been bothered by uncertainty about what to expect from the course of your illness?

Not at all

QOL- Prognostic Uncertainty

Modified from Dartmouth COOP Chart (“Bothered by”) [43] and “what to expect from the course of my illness” [63]

Slightly

Moderately

Quite a bit

Extremely

5. Over the past two days, how much have you felt at peace?

Completely

QOL- Spiritual

Modified from Peace Screening Item [64]

Quite a bit

Moderately

Slightly

Not at all

a6. Over the past two days, how much have you felt heard and understood by the doctors, nurses and hospital staff?

Completely

Perceptions of Patient-Centered Communication

Modified from the Healthcare Climate Questionnaire [65] and the Patient Perceptions of Patient-Centeredness Questionnaire [36, 66]

Quite a bit

Moderately

Slightly

Not at all

7. – 10. Gender (including transgendered), Ethnicity, Race, Education

   

11. When you think about the amount of income that you have available in a typical month, how often is it enough for things you really need like food, clothing, medicine, repairs to the home, and transportation?

All of the time

Financial Strain

Modified from VOICE Study [49]

Most of the time

Some of the time

None of the time

12. How well does the following statement describe you? “In uncertain times, I tend to expect the best.”

Completely

Dispositional Optimism

Life Orientation Test, main item [67, 68]

Quite a bit

Moderately

Slightly

Not at all

13. What religions, if any, do you maintain a connection with? (Please check all that apply)

Christianity, Judaism, Islam, Hinduism, Buddhism, Other, No formal religious affiliation

Identity with Religion

VOICE Study [49]

14. How much are your spiritual needs being supported by a religious community (like clergy or members of a congregation)?

Completely

Spiritual Support- Religious

Coping with Cancer Study [69]

Quite a bit

Moderately

Slightly

Not at all

15. How much are your spiritual needs being supported by the medical system (doctors, nurses and chaplains)?

Completely

Spiritual Support- Medical

Coping with Cancer Study [69]

Quite a bit

Moderately

Slightly

Not at all

16. How would you describe the purpose of your current medical care? Would you say

Yes

Perceptions of Treatment Purpose

Temel Study [23]

No

Don’t know

A. “to help you live longer?”

(for each a-c)

B. “to help you feel better?”

C. “to get rid of all the cancer?”

17. Would you say that it is likely or unlikely that you will live for a year or longer?

Very Likely

Self-Reported Life Expectancy

Adapted from Diefenback [70]

Likely

Unlikely

Very Unlikely

No idea

18. How strongly do you agree or disagree with the following statement?

Strongly Agree

End of Life Treatment Preferences

Modified from SUPPORT Study [1, 71]

Somewhat Agree

Not sure

“During the last few months of my life, I would prefer a plan of treatment that focused on my comfort and quality of life, even if that meant not living quite as long.“

Somewhat Disagree

Strongly Disagree

  1. a asked at baseline questionnaire and on the calendar day following the initial recorded conversation, changing “Over the last 2 days…” to “Today…” on the latter assessment