Distinct communication patterns during genetic counseling for late-onset Alzheimer's risk assessment

Abstract

OBJECTIVE To identify and characterize patient-provider communication patterns during disclosure of Alzheimer’s disease genetic susceptibility test results and to assess whether these patterns reflect differing models of genetic counseling. METHODS 262 genetic counseling session audio-recordings were coded using the Roter Interactional Analysis System. Cluster analysis was used to distinguish communication patterns. Bivariate analyses were used to identify characteristics associated with the patterns. RESULTS Three patterns were identified: Biomedical-Provider-Teaching (40%), Biomedical-Patient-Driven (34.4%), and Psychosocial-Patient-Centered (26%). Psychosocial-Patient-Centered and Biomedical-Provider-Teaching sessions included more female participants while the Biomedical-Patient-Driven sessions included more male participants (p = 0.04). CONCLUSION Communication patterns observed reflected the teaching model primarily, with genetic counseling models less frequently used. The emphasis on biomedical communication may potentially be at the expense of more patient-centered approaches. PRACTICE IMPLICATIONS To deliver more patient-centered care, providers may need to better balance the ratio of verbal exchange with their patients, as well as their educational and psychosocial discussions. The delineation of these patterns provides insights into the genetic counseling process that can be used to improve the delivery of genetic counseling care. These results can also be used in future research designed to study the association between patient-centered genetic counseling communication and improved patient outcomes.

Disclosing genetic risk of Alzheimer’s disease to cognitively impaired patients and visit companions: Findings from the REVEAL Study

“…This is especially evident in contrast to the analysis of APOE genotype disclosure to asymptomatic adult children of an AD parent [9] wherein sessions were largely didactic in nature with relatively little emphasis on psychosocial and emotional topics. The patient-centered approach adopted by the genetic counselors in the current study seems to result in greater patient and companion engagement in the dialogue.…”

“…In light of prior studies that have described AD genotype discussions as complex and biomedically and technically focused [9], we hypothesized that the genotype discussions would be less patient-centered and have a more didactic teaching style, characterized by greater provision of basic biomedical information and less psychosocial, emotional and facilitative talk compared AD risk discussions that omitted genotype discussions. We also hypothesized that the delivery of results indicating an increased risk of AD (i.e., presence of the APOE ε4 allele) would trigger more active engagement by an accompanying family member, considering the serious implications of positive results for blood relatives in terms of their own AD vulnerability and implications for caretaker responsibilities.…”

How Do Providers Discuss the Results of Pediatric Exome Sequencing with Families?

“…Clinicians may experience distress when returning genetic testing results if they anticipate families will respond with emotional intensity or if they are concerned about their skill in explaining complex genomic concepts [15,16]. Genetics professionals often focus on communicating genome-based scientific information with less attention to nuanced and variable psychosocial issues [14,17,18]. Such communication involves heavy use of technical jargon that may overwhelm, confuse and frustrate families [19] whose primary concerns center on medical management, daily care and quality of life [20,21].…”

Elaboration of the Reciprocal‐Engagement Model of Genetic Counseling Practice: a Qualitative Investigation of Goals and Strategies

“…In a critical review of 18 studies of genetic counseling communication, Meiser et al (2008) found prevalent communication patterns consistent with a biomedical model, such that counselors talked more than their patients. Lerner et al (2014) examined communication of genetic test results for susceptibility to Alzheimer's disease in 262 genetic counseling sessions. Identified behaviors included biomedical and psychosocial questioning and information giving and efforts to build partnerships.…”