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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