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.

Research Participants’ Perspectives on Precision Diagnostics for Alzheimer’s Disease

“…While frustration about lack of AD/ADRD treatment was common, diseasemodifying therapies have become available since our survey data were collected. Similar to research studies that have evaluated the psychological impacts of receiving genetic testing and neuroimaging testing for AD/ADRD risk, most participants in our study did not endorse negative feelings in response to testing [35][36][37]. Our results thus further support the disclosure of AD biomarker results in research and clinical care [38,39].…”

Adaptation of the working alliance inventory for the assessment of the therapeutic alliance in genetic counseling

“…A more complete evaluation of the validity of these measures should include simultaneous measures of related constructs including systematic assessments of other aspects of communication, trust in the genetic counselor, and satisfaction with communication (Anderson & Dedrick, 1990; Roter et al., 2006, 2012). Subsequent studies should consider the relationship of working alliance scores with communication characteristics as measured by the Roter Interaction Analysis System (RIAS), which has previously been used to characterize the communication patterns within genetic counseling visits (Ellington et al., 2005; Guan et al., 2018; Lerner et al., 2014; Pieterse et al., 2005; Roter et al., 2006). Unlike the WAI‐O, which is a global measure based on the rater's assessment of a session in its entirety, the RIAS codes every utterance by each speaker in the visit using a mutually exclusive and exhaustive list of communication categories.…”

Disclosing genetic risk for Alzheimer's dementia to individuals with mild cognitive impairment

“…Limitations include enrollment of a volunteer population of individuals who were generally more educated and may be better prepared to cope with higher‐risk results than the population at large 13 . Our study also mandated that participants enroll with a study partner who provided social support and responded to risk disclosure in ways that may have influenced study outcomes, 17,48 so the findings may not be generalizable to individuals lacking such social support. The wait for disclosure in the non‐disclosure arm may have induced anticipatory anxiety.…”