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Protocol - Patient Centered Communication - Cancer

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Description

A self-reported questionnaire with 36 Likert style items. For use with adults interacting with doctors and other health professionals such as nurses and physician assistants for cancer related care.

Specific Instructions

The PCC-Ca © can be used as an independent or a dependent variable. Some suggested analyses include:

• examining the variation in sociodemographic and cancer characteristics according to the PCC-Ca ©,

• assessing the relationship between PCC and other experiences with cancer care, and

• conducting analyses to determine the relationship between PCC and health outcomes, and whether variables such as health literacy and attitudes toward the healthcare system mediate that relationship.

Some suggested opportunities for further validation include:

• extension of the PCC-Ca © for use by telephone or other formats,

• use of the PCC-Ca © in other patient populations (e.g., other cancer types), and

• translation of the PCC-Ca © into other languages.

If you wish to make translations or modifications—such as modifying the instrument for use with noncancer patient populations—you must first contact RTI for permission. Contact information is listed on page 7 of the User Guide.

If this is administered via web or computer-based survey, the working group recommends removing the instruction stating “Please use a BLACK or DARK BLUE ink pen to mark your answers.”

Note: Items with an asterisk (*) were selected for the PCC-CA-6 © measure (questions 2, 4c, 9b,12,15, and 16)

Protocol

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 (*)

Availability

Available

Personnel and Training Required

None

Equipment Needs

Both the PCC-Ca-36© and the PCC-Ca-6© measures were designed to be administered as a paper-and-pencil survey or web-based survey.

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Life Stage

Adult, Senior

Participants

Designed for use with patients with variety of types of cancer, the PCC-Ca-36© was validated with a colorectal cancer patient population.

Selection Rationale

Researchers and practitioners can use the Patient-Centered Communication in Cancer Care © (PCC-Ca©) for surveillance, quality monitoring, assessment, and intervention evaluation. It was developed and tested using the Patient-Centered Communication framework developed by Epstein and Street to evaluate all components of the framework.

Language

English

Standards
StandardNameIDSource
caDSR Common Data Elements (CDE) Patient-Centered Communication in Cancer Care (PCC-Ca) Assessment Text 7533663 CDE Browser
Derived Variables

None

Process and Review

Not Applicable

Protocol Name from Source

Patient-Centered Communication in Cancer Care © (PCC-Ca) - 36 items (long form)

Source

Patient-Centered Communication in Cancer Care Instrument User Guide. Version 1.0. September 1, 2016. 36-Item Instrument (PCC-Ca-36) and 6-Item Instrument (PCC-Ca-6).

Copyright © 2016 by RTI International and the University of North Carolina at Chapel Hill. All rights reserved. This work is licensed under a Creative Commons Attribution-No Derivatives 4.0 International License (CC-BY-ND 4.0).

General References

Austin, J. D., Robertson, M. C., Shay, L. A., & Balasubramanian, B. A. (2019). Implications for patient-provider communication and health self-efficacy among cancer survivors with multiple chronic conditions: results from the Health Information National Trends Survey. Journal of cancer survivorship : research and practice, 13(5), 663–672. https://doi.org/10.1007/s11764-019-00785-7

Reeve, Bryce B.; Thissen, David M.; Bann, Carla M.; Mack, Nicole; Treiman, Katherine; Sanoff, Hanna K.; Roach, Nancy; Magnus, Brooke E.; He, Jason; Wagner, Laura K.; Moultrie, Rebecca; Jackson, Kathryn D.; Mann, Courtney; and McCormack, Lauren A., "Psychometric Evaluation and Design of Patient-Centered Communication Measures for Cancer Care Settings" (2017). Psychology Faculty Research and Publications. 281.
https://epublications.marquette.edu/psych_fac/281

Street RL Jr, Mazor KM, Arora NK. Assessing Patient-Centered Communication in Cancer Care: Measures for Surveillance of Communication Outcomes. J Oncol Pract. 2016;12(12):1198–1202. http://doi.org/10.1200/JOP.2016.013334

Epstein RM, Street RL, Jr. Patient-centered communication in cancer care: promoting healing and reducing suffering. National Cancer Institute, NIH Publication No. 07-6225. Bethesda, MD, 2007.

Institute of Medicine, Committee on Quality of Health Care in America. Crossing the quality chasm: a new health system for the 21st Century. Washington, DC: National Academy Press; 2001. http://www.ncbi.nlm.nih.gov/books/NBK222274/

McCormack LA, Treiman K, Rupert D, et al. Measuring patient-centered communication in cancer care: a literature review and the development of a systematic approach. Soc Sci Med. 2011;72(7):1085-1095. DOI: 10.1016/j.socscimed.2011.01.020

National Cancer Institute. Health Information National Trends Survey 2007 (HINTS 2007) English Extended Interview Instrument – Final Version. September 2008. http://hints.cancer.gov/docs/Instruments/HINTS%202007%20CATI%20Instrument%20(English).pdf

Treiman K, McCormack LA, Olmsted M, et al. Engaging patient advocates and other stakeholders to design measures of patient-centered communication in cancer care. The Patient: Patient-Centered Outcomes Research. In press.

Protocol ID

320701

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
Cancer Outcomes and Survivorship
Measure Name

Patient Centered Communication - Cancer

Release Date

December 17, 2020

Definition

A questionnaire assessing patient centered communication in six core domains: (1) exchanging information, (2) making decisions, (3) fostering healing relationships, (4) enabling patient self-management, (5) managing uncertainty, and (6) responding to emotions.

Purpose

Patient-centered communication (PCC) is essential to providing high-quality, patient-centered medical care. By providing trustworthy information that is attentive, responsive, and tailored to a patient’s needs, clinicians can improve patient satisfaction, health-related quality of life, and other important health outcomes.

Keywords

Patient-Centered Outcomes Research Institute (PCORI), National Cancer Institute (NCI), Cancer Outcomes and Survivorship, Cancer, Physician Communication, Patient-centered care, Patient satisfaction