Communication Predictors of Patient and Companion Satisfaction with Alzheimer’s Genetic Risk Disclosure

Abstract

The objective of this study was to identify how features of Alzheimer’s disease (AD) genetic risk disclosure communication relate to patient and visit companion satisfaction. We conducted secondary analyses of 79 session recordings from the fourth REVEAL Study, a randomized-controlled trial of AD genetic risk disclosure among patients with mild cognitive impairment. Patient and companion satisfaction were ascertained from postdisclosure surveys. The Roter Interaction Analysis System (RIAS) was used to code triadic communication between the counselor, patient, and companion. High satisfaction was evident for 24% of patients (N = 19) and 48% of companions (N = 38). Multivariate logistic regressions showed that high patient satisfaction was associated with patients’ expression of emotions (OR = 1.1, 95% CI: 1.0–1.1) and companions’ questions about psychosocial and lifestyle topics (OR = 1.8, 95% CI: 1.1–2.8). High companion satisfaction was positively related to the RIAS overall patient-centeredness score for the session (OR = 4.0, 95% CI: 1.0–15.6) (all p-values <0.05). Communication predictors of patient and companion satisfaction reflect specific or summary indicators of patient-centeredness. Findings also suggest that visit companions positively influence patient satisfaction. The study results support the growing literature and policy attention directed toward delivering family-centered care.

Acknowledgments

Additional members of the REVEAL Study Group are Deborah Blacker, Massachusetts General Hospital/Harvard Medical School and Harvard School of Public Health, Boston, Massachusetts; Melissa Butson, Case Western Reserve University, Cleveland, Ohio; Clara Chen, Boston University School of Public Health, Boston, Massachusetts; Robert Cook-Deegan, Sanford School of Public Policy, Durham, North Carolina; Elana Cox, Weill Cornell Medical College, New York, New York; L. Adrienne Cupples, Boston University School of Public Health, Boston, Massachusetts; Jessica Davis, Weill Cornell Medical College, New York, New York; Lindsay Farrer, Boston University School of Medicine and Boston University School of Public Health, Boston, Massachusetts; Grace-Ann Fasaye, Walter Reed National Military Medical Center, Bethesda, Maryland; Patrick Griffith, Morehouse School of Medicine, Atlanta, Georgia; Kristin Harkins, Perelman School of Medicine, Philadelphia, Pennsylvania; Susan Hiraki, GeneDX, Gaithersburg, Maryland; Megan Johnson, Howard University, Washington, DC; Stephanie Johnson, Howard University, Washington, DC; Jason Karlawish, Perelman School of Medicine, Philadelphia, Pennsylvania; Denise Perry, Brigham and Women’s Hospital, Boston, Massachusetts; Lan Le, University of Michigan School of Public Health, Ann Arbor, Michigan; Elana Levison, Division of Genetics, New York Presbyterian Hospital, New York, New York; Natalie Bartnik, University of Michigan School of Public Health, Ann Arbor, Michigan); Erin Linnenbringer, Washington University School of Medicine, St. Louis, Missouri; Elisabeth McCarty Wood, Perelman School of Medicine, Philadelphia, Pennsylvania; Thomas Obisesan, Howard University Hospital, Washington, DC; Stephen Post, Stony Brook University, Stony Brook, New York; Kimberly Quaid, Indiana University School of Medicine, Indianapolis, Indiana; Lisa Ravdin, Weill Cornell Medical College, New York, New York; Norman Relkin, Weill Medical College of Cornell University, New York, New York; Charmaine Royal, Duke University, Durham, North Carolina; Robert Stern, Boston University School of Medicine, Boston, Massachusetts; A. Dessa Sadovnick, University of British Columbia, Vancouver, British Columbia; Susan Sami, Case Western Reserve University, Cleveland, Ohio; Pamela Sankar, Perelman School of Medicine, Philadelphia, Pennsylvania; Wendy Uhlmann, University of Michigan Medical School, Ann Arbor, Michigan; Leo Waterston, Brigham and Women’s Hospital, Boston, Massachusetts; Peter Whitehouse, Case Western Reserve University, Cleveland, Ohio; and Lori Wright, Medical College of Georgia, Athens, Georgia.

Conflict of Interest

Debra Roter is the author of the Roter Interaction Analysis System (RIAS) and holds the copyright for the system. Johns Hopkins University also has rights to some enhancements of the system. Neither Debra Roter nor Johns Hopkins collects royalties for use of the system in research as is the case for the current study. Debra Roter is an owner of RIASWorks LLC, a company that provides RIAS coding services for nonuniversity projects and it is possible that RIASWorks would benefit indirectly from dissemination of the current research. Robert Green reports personal fees from Illumina, Helix, GenePeeks, Veritas, and Ohana and is a cofounder with equity in Genome Medical. There are no other conflicts of interest.

Additional information

Funding

This work was supported by NIH grants: [Grant Numbers HG002213, HG006500, HD077671, AG013846, AG053760, RR000533, RR010284, TR001102, and HG009173].