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Engaging Patient Advocates and Other Stakeholders to Design Measures of Patient-Centered Communication in Cancer Care

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Abstract

Background

Patient-centered communication (PCC) is an essential component of patient-centered care and contributes to patient satisfaction, health-related quality of life, and other important patient outcomes.

Objective

The aim of this study was to develop and test survey questions to assess patients’ experiences with PCC in cancer care.

Methods

We used a conceptual model developed by the National Cancer Institute as our framework. The survey questions align with the six core functions of PCC defined in the model: Exchanging Information, Managing Uncertainty, Enabling Patient Self-Management, Fostering Healing Relationships, Making Decisions, and Responding to Emotions. The study focused on colorectal cancer patients. We conducted two rounds of cognitive interviewing to evaluate patients’ ability to understand and provide valid answers to the PCC questions. Interviews were conducted in Maryland and North Carolina in 2014. We involved a patient advocacy group, Fight Colorectal Cancer, and a multidisciplinary panel of stakeholders throughout the measurement development process to ensure that the survey questions capture aspects of PCC that are important to patients and meet the needs of potential end users, including researchers, healthcare organizations, and health professionals.

Results

Patient and other stakeholder input informed revisions of draft survey questions, including changes to survey instructions, frame of reference for questions, response scales, and language.

Conclusion

This study demonstrated the feasibility and value of engaging patients and other stakeholders in a measurement development study. The Patient-Centered Outcomes Research Institute (PCORI) conceptual model of patient-centered outcomes research provides a useful guide for patient engagement in research. Research funders should call for meaningful roles for patients and other stakeholders in health research, including in the development of patient-centered outcomes.

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Fig. 1

(source: Epstein and Street [1])

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Acknowledgments

The authors would like to thank Fight Colorectal Cancer and the patients who participated in this study.

Author information

Authors and Affiliations

  1. RTI International, 3040 E. Cornwallis Road, PO Box 12194, Research Triangle Park, NC, 27709-2194, USA

    Katherine Treiman, Lauren McCormack, Murrey Olmsted & Rebecca R. Moultrie

  2. RTI International, 6110 Executive Blvd, Rockville, MD, 20852, USA

    Katherine Treiman

  3. Fight Colorectal Cancer, Alexandria, VA, 22314, USA

    Nancy Roach

  4. University of North Carolina at Chapel Hill, Chapel Hill, NC, 27599, USA

    Bryce B. Reeve, Christa E. Martens & Hanna Sanoff

Authors
  1. Katherine Treiman
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  2. Lauren McCormack
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  3. Murrey Olmsted
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  4. Nancy Roach
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  5. Bryce B. Reeve
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  6. Christa E. Martens
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  7. Rebecca R. Moultrie
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  8. Hanna Sanoff
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Corresponding author

Correspondence to Katherine Treiman.

Ethics declarations

The views presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of PCORI, its Board of Governors, or its Methodology Committee. *Please contact PCC-ca@rti.org to obtain the final PCC measures and user's guide developed as part of this study.

Funding

Research reported in this manuscript was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award ME-1303-5838.

Author contributions

Katherine Treiman contributed expertise in patient-centered communication and led measurement development and cognitive interviewing. Katherine Treiman and Lauren McCormack wrote the majority of the manuscript. Lauren McCormack and Bryce Reeve provided overall study leadership. Murrey Olmsted contributed to the survey methods and to measurement development and cognitive interviewing. Nancy Roach served as the lead for the patient advocacy group and contributed to patient and caregiver perspectives. Christa Martens served as part of both the study team and the cognitive interviewing team. Rebecca Moultrie served as part of the study team. Hanna Sanoff provided clinical oncology expertise for measurement development. All co-authors contributed to measurment development, provided input, and reviewed the draft and final versions of the manuscript.

Conflicts of interest

Katherine Treiman, Lauren McCormack, Murrey Olmsted, Nancy Roach, Bryce Reeve, Christa Martens, Rebecca Moultrie, and Hanna Sanoff declare that they have no conflicts of interest.

Ethical approval

This study was approved by the RTI International Institutional Review Board.

Informed consent

Cognitive interview participants provided written informed consent.

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Treiman, K., McCormack, L., Olmsted, M. et al. Engaging Patient Advocates and Other Stakeholders to Design Measures of Patient-Centered Communication in Cancer Care. Patient 10, 93–103 (2017). https://doi.org/10.1007/s40271-016-0188-6

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  • DOI: https://doi.org/10.1007/s40271-016-0188-6

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