Protocol - Patient Centered Communication - Cancer

Thank you for taking the time to fill out this survey.

This survey asks about your experiences with doctors and other health

professionals such as nurses and physician assistants. This is not a test, and there are no right and wrong answers.

Instructions:

• Please share your honest opinions. All of your answers will be kept private. The information will not be reported back to your doctors, nurses, or anyone else who provides care.
• Please use a BLACK or DARK BLUE ink pen to mark your answers.
• Be sure to read all of the answer choices before marking your answer.

Sharing Information

1. How often do your doctors and other heal professionals…

a. Talk with you about your concerns and questions?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

b. Give you helpful information, even when you don’t ask for it?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

c. Make sure you have the information you need?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

d. Help you understand the information you need to know?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

e. Make sure your questions are answered?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

2. How much do your doctors and other health professionals make you feel comfortable asking questions? *

[ ] Not at all

[ ] Not very much

[ ] Somewhat

[ ] A lot

[ ] A great deal

Relationships with Doctors and Other Health Professionals

3. How much can you depend on your doctors and other health professionals to give you the care you need?

[ ] Not at all

[ ] Not very much

[ ] Somewhat

[ ] A lot

[ ] A great deal

4. How often do your doctors and other health professionals…

a. Show they care about you?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

b. Remember details about you between visits?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

c. Have open and honest communication with you? *

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

d. Listen carefully to what you have to say?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

5. How much do your doctors and other health professionals seem well informed about your type of cancer?

[ ] Not at all

[ ] Not very much

[ ] Somewhat

[ ] A lot

[ ] A great deal

6. Different doctors and health professionals are often involved in a patient’s care. How well do your doctors and other health professionals explain what they each do?

[ ] Poorly

[ ] Not very well

[ ] Fairly well

[ ] Very well

[ ] Outstanding

Making Decisions

Many decisions need to be made in cancer care, such as decisions about treatment choices, where to go for care, or how to manage side effects.

Please think about all of the decisions there have been in your care.

7. How often do your doctors and other health professionals involve you in

making decisions about your care?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

[ ] Does not apply/there have not been any decisions

8. How well do your doctors and other health professionals …

a. Explain the different choices you have?

[ ] Poorly

[ ] Not Very Well

[ ] Fairly Well

[ ] Outstanding

[ ] Does Not Apply

b. Explain what they recommended?

[ ] Poorly

[ ] Not Very Well

[ ] Fairly Well

[ ] Outstanding

[ ] Does Not Apply

9. How much do your doctors and other health professionals…

a. Show interest in what you say about the decisions?

[ ] Not at all

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

b. Give you information and resources to help you make decisions? *

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

Attention to Your Emotions

10. How often do your doctors and other health professionals give the

attention you need to your feelings and emotions?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

[ ] Does not apply/I do not want attention to my feelings and emotions

11. How much do your doctors and other health professionals…

a. Pay attention to how you are doing emotionally?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

b. Show concern for your feelings, not just your illness?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

c. Show concern for how your family is doing emotionally?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

d. Make you feel comfortable to talk about your fears, stress, and other feelings?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

12. How well do your doctors and other health professionals talk with you

about how to cope with any fears, stress, and other feelings? *

[ ] Poorly

[ ] Not very well

[ ] Fairly well

[ ] Very well

[ ] Outstanding

[ ] Does not apply

Taking Care of Yourself

13. How well do your doctors and other health professionals help you

understand ways you can take care of your health?

[ ] Poorly

[ ] Not very well

[ ] Fairly well

[ ] Very well

[ ] Outstanding

14. How much do your doctors and other health professionals talk with

you about…

a. How cancer is affecting your everyday life?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

b. Ways you can manage any side effects or symptoms?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

c. How your family can help care for you?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

d. Any concerns you have about taking care of yourself?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

15. How often do your doctors and other health professionals make sure

you understand the steps in your care? *

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

Dealing with Uncertainty

16. Cancer patients often face uncertainties about their cancer. For

example, patients may not know what will happen, how treatment is

working, and how to make sense of different information and opinions.

How well do your doctors and other health professionals help you deal

with the uncertainties about your cancer? *

[ ] Poorly

[ ] Not very well

[ ] Fairly well

[ ] Very well

[ ] Outstanding

[ ] Does not apply/have not been any uncertainties

17. How much do your doctors and other health professionals help you

understand …

a. If you are getting better or worse?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

b. The goal of your care?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

c. What is likely to happen with your cancer?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

d. How your symptoms may change?

[ ] Not at All

[ ] Not Very Much

[ ] Somewhat

[ ] A Lot

[ ] A Great Deal

[ ] Does Not Apply

18. Patients often get information from different places. How well do your

doctors and other health professionals help you understand what

information is most important?

[ ] Poorly

[ ] Not very well

[ ] Fairly well

[ ] Very well

[ ] Outstanding

[ ] Does not apply/I have not gotten information from different places

Scoring

Each item included in the PCC-Ca© instrument consists of a question stem and five response options. The response options are scored from 1 to 5, with higher scores representing better communication; for example, where 1 = Never and 5 = Always. There are no reverse scored items. Some items have a sixth does not apply” option. This response is not scored. The PCC-Ca-36© measure provides scores for each of the six PCC core functions and overall PCC. The PCCCa-6© measure provides a single score for overall PCC only. On the PCC-Ca-36 measure, scores for each PCC function are an average of the item responses within each function. Scores across the entire PCC-Ca-36© measure for the overall PCC score are an average of all of the items. Scores are averaged, not summed, across items and functions so that missing data do not result in an artificially low score. Table 1 presents scoring instructions for both measures.

Function	Scoring for PCC-Ca-36©	Scoring for PCC-Ca-6©
Exchanging Information	Mean of “Sharing Information” item responses (1a, 1b, 1c, 1d, 1e, and 2)
Fostering Healing Relationships	Mean of “Relationships with Doctors and Other Health Professionals” item responses (3, 4a, 4b, 4c, 4d, 5, and 6)
Making Decisions	Mean of “Making Decisions” item responses (7, 8a, 8b, 9a, and 9b)
Responding to Emotions	Mean of “Attention to Your Emotions” item responses (10, 11a, 11b, 11c, 11d, and 12)
Enabling Patient Self-Management	Mean of “Taking Care of Yourself” item responses (13, 14a, 14b, 14c, 14d, and 15)
Managing Uncertainty	Mean of “Dealing with Uncertainty” item responses (16, 17a, 17b, 17c, 17d, and 18)
Overall PCC	Mean of all 36 item responses	Mean of all 6 item responses with an asterisk (*)