Patient-reported outcome measures suitable to assessment of patient navigation§

Authors


  • We very much appreciate the thoughtful comments from Amy De Groff, PhD, MPH (Centers for Disease Control and Prevention).

  • The articles in this supplement are based on presentations at the “National Patient Navigator Leadership Summit”; March 23-24, 2010; Atlanta, GA.

  • §

    The opinions or views expressed in this supplement are those of the authors, and do not necessarily reflect the opinions or recommendations of the publisher, the editors, the University of Illinois at Chicago, the American Cancer Society, or the Ralph Lauren Center for Cancer Care and Prevention.

  • National Patient Navigator Leadership Summit (NPNLS): Measuring the Impact and Potential of Patient Navigation, Supplement to Cancer.

Abstract

BACKGROUND:

Patient-reported outcomes (PROs) are measures completed by patients to capture outcomes that are meaningful and valued by patients. To help standardize PRO measures in patient navigation research and program evaluation, the Patient-Reported Outcomes Working Group (PROWG) was convened as part of the American Cancer Society's National Patient Navigator Leadership Summit.

METHODS:

The PROWG consisted of clinicians, researchers, and program managers from a variety of perspectives who developed a set of recommended PRO measures across the cancer continuum (ie, screening, diagnostic follow-up, treatment, survivorship, end of life) as well as those useful for assessing family caregivers. Measures were recommended based on face validity, responsiveness to navigation, reliability, and construct validity in relevant populations. Other considerations included readability, existence of multiple language versions, the existence of norm groups, and respondent burden.

RESULTS:

The PROWG reached consensus on measures for use in the domains of treatment adherence; perceived barriers to care; satisfaction with cancer care; satisfaction with patient navigation services; working alliance with patient navigator; perceived knowledge/competence/self-efficacy; functional assessment/symptom burden; global quality of life; specific quality-of-life symptoms (eg, depression, anxiety); and perceived cultural competency of the navigator. In domains where validated measures were found lacking, recommendations were made for areas of needed scale development.

CONCLUSIONS:

These measures should guide research and programmatic evaluation of patient navigation. Cancer 2011;117(15 suppl):3601–615. © 2011 American Cancer Society.

Ancillary