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

Katherine Treiman, Lauren McCormack, Murrey Olmsted, Nancy Roach, Bryce B. Reeve, Christa E. Martens, Rebecca R. Moultrie, Hanna Sanoff

Research output: Contribution to journalArticle

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.

LanguageEnglish (US)
Pages93-103
Number of pages11
JournalPatient
Volume10
Issue number1
DOIs
StatePublished - Feb 1 2017

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Communication
Neoplasms
Patient Outcome Assessment
Colorectal Neoplasms
Research
Patient Advocacy
Patient Participation
Patient-Centered Care
Aptitude
Foster Home Care
National Cancer Institute (U.S.)
Health
Feasibility Studies
Self Care
Patient Satisfaction
Uncertainty
Decision Making
Emotions
Language
Quality of Life

ASJC Scopus subject areas

  • Nursing (miscellaneous)

Cite this

Engaging Patient Advocates and Other Stakeholders to Design Measures of Patient-Centered Communication in Cancer Care. / Treiman, Katherine; McCormack, Lauren; Olmsted, Murrey; Roach, Nancy; Reeve, Bryce B.; Martens, Christa E.; Moultrie, Rebecca R.; Sanoff, Hanna.

In: Patient, Vol. 10, No. 1, 01.02.2017, p. 93-103.

Research output: Contribution to journalArticle

Treiman, K, McCormack, L, Olmsted, M, Roach, N, Reeve, BB, Martens, CE, Moultrie, RR & Sanoff, H 2017, 'Engaging Patient Advocates and Other Stakeholders to Design Measures of Patient-Centered Communication in Cancer Care' Patient, vol 10, no. 1, pp. 93-103. DOI: 10.1007/s40271-016-0188-6
Treiman K, McCormack L, Olmsted M, Roach N, Reeve BB, Martens CE et al. Engaging Patient Advocates and Other Stakeholders to Design Measures of Patient-Centered Communication in Cancer Care. Patient. 2017 Feb 1;10(1):93-103. Available from, DOI: 10.1007/s40271-016-0188-6
Treiman, Katherine ; McCormack, Lauren ; Olmsted, Murrey ; Roach, Nancy ; Reeve, Bryce B. ; Martens, Christa E. ; Moultrie, Rebecca R. ; Sanoff, Hanna. / Engaging Patient Advocates and Other Stakeholders to Design Measures of Patient-Centered Communication in Cancer Care. In: Patient. 2017 ; Vol. 10, No. 1. pp. 93-103
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