Development of a motivational interviewing genetic counseling intervention to increase cascade cholesterol screening in families of children with familial hypercholesterolemia

Self Cite

Current genetic counseling practice has not been found to significantly increase risk communication between family members. A more diverse set of genetic counseling approaches may be needed. A genetic counseling intervention based on motivational interviewing principles and the extended parallel process model was utilized to increase cascade outcomes within families with familial hypercholesterolemia, a common, underdiagnosed, and treatable condition. Parents of children with familial hypercholesterolemia were invited to participate in an online pre-survey, singlesession genetic counseling intervention, and post-intervention surveys as a part of the CHEERS (Cholesterol Evaluation to Explore Risk Screening) intervention. This study investigated the efficacy of a genetic counselor delivered motivational interviewing intervention and how parents of children with familial hypercholesterolemia react by assessing family member cholesterol screening and risk communication to at-risk relatives. Transcripts were audio-recorded, transcribed, and analyzed for change talk using the Motivational Interviewing Skill Code version 2.1. Participant surveys were analyzed for self-reported extended parallel process constructs and motivations.Coincidence analysis was conducted to explore differences between those with and without positive cascade outcomes within 12 months after the intervention. On average, change talk increased during the session in order of the extended parallel process constructs (perceived severity, susceptibility, response efficacy, self-efficacy).Coincidence analysis revealed that 6 of the 7 cases with positive cascade outcomes were explained by either the presence of high change talk during the intervention or presence of positive motivations shortly after, while 5 of the 5 cases without a positive outcome lacked both of these key factors that were associated with cascade outcomes. Results of this study suggest that incorporating motivational interviewing and the extended parallel process model increases change talk and that the presence of either high levels of change talk or positive motivations is associated with positive cascade outcomes.

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Application of motivational interviewing strategies with the extended parallel process model to improve risk communication for parents of children with familial hypercholesterolemia

Winchester

Cragun

Redlinger‐Grosse

et al. 2022

Self Cite

“…The MI/EPPM intervention is described in detail elsewhere (Kruger et al., 2019). Briefly, the intervention consisted of a telephone call with one of two study‐affiliated genetic counselors.…”

Section: Methodsmentioning

confidence: 99%

“…The present study is modeled after the Family CARE Project, using principles of the EPPM combined with a delivery style drawn from MI to address challenges to identification and treatment of FH (Kruger et al., 2019). The purpose of this pilot longitudinal study of parents of children with FH was to assess the effect of a combination MI/EPPM intervention delivered by a genetic counselor on family member notification of disease risk and screening.…”

Section: Introductionmentioning

confidence: 99%

Outcomes from a pilot genetic counseling intervention using motivational interviewing and the extended parallel process model to increase cascade cholesterol screening

Baldry

Redlinger‐Grosse

MacFarlane

et al. 2021

Self Cite

Familial hypercholesterolemia (FH) is an inherited condition resulting in increased risk of premature cardiovascular disease. This risk can be reduced with early diagnosis and treatment, but it can be challenging to identify individuals with FH. Cascade screening, the most efficient and cost‐effective identification method, requires FH patients to communicate with their at‐risk family and encourage them to pursue screening. Beyond FH, patients with conditions increasing disease risk to family members report barriers to the communication process such as insufficient knowledge of the condition and discomfort informing relatives. We conducted a pilot study of a genetic counseling intervention incorporating behavior‐change principles from motivational interviewing (MI) and the extended parallel process model (EPPM) to help parents of children with FH overcome these barriers and improve cascade screening rates for FH. Of the 13 participants who completed the intervention and post‐intervention surveys, 6 reported contacting and/or screening additional relatives. A large effect size in increasing communication and screening was observed (η2 = 0.20), with the mean percent of at‐risk relatives contacted rising from 33% to 45%, and the mean percent screened rising from 32% to 42%. On average, 2.23 new relatives were contacted and 2.46 were screened, per participant, by the end of the study. Direct content analysis revealed that despite the open‐ended nature of the goal‐setting process, participant goals fell into two categories including those who set goals focused on communicating with and screening family members (n = 9) and those who set goals only focused on managing FH (n = 4). Overall, the communication and screening rates reported after the intervention were higher than previous observations in adult FH populations. These results suggest this EPPM/MI genetic counseling intervention could be a useful tool for increasing communication and cascade screening for FH. With further research on goal‐setting techniques, the intervention could be refined and replicated to identify more individuals affected by FH or modified for use with other actionable genetic conditions.

“…One consequence of the profession's historical emphasis on nondirectiveness has been some confusion about genetic counselors' purview to make normative claims or recommendations as part of their practice (Pennacchini & Pensieri, ; Redlinger‐Grosse, Veach, & MacFarlane, ). This confusion persists despite evidence that genetic counselors are making increasingly proactive, evidence‐based recommendations in some clinical settings (Kruger et al, ). Today's genetic counselors are also involved in developing guidelines and position statements (Druker et al, ; Levin & Varga, ; Sturm et al, ).…”

Section: Introductionmentioning

confidence: 99%

An ethical framework for genetic counseling in the genomic era

Jamal

Schupmann

Berkman

2019

Since the inception of their profession, genetic counselors have helped patients and families adapt to varied circumstances and make decisions influenced by powerful emotions. In doing so, they have had to reconcile ethical principles with the diverse values of their patients. While this challenge is not unique in medicine, it has preoccupied genetic counselors disproportionately because such a large share of genetic counseling work involves nuanced discussions about reproductive choices and the impact of difference and disability on people's lives. Historically, the profession of genetic counseling has relied on 'nondirectiveness' to guide practice. Nondirectiveness has been defined in various ways: as a counseling method designed to be value-neutral (Caplan, 1993); as the prevention of coercion or persuasion in genetic counseling(Hamby & Biesecker, 2000); as a commitment not to impose one's own values on patients (Fine, 1993); and as a counseling strategy that supports autonomous decision-making (Bartels, LeRoy, McCarthy, & Caplan, 1997). The original ethical justification for practicing nondirectively was to respect individual patient autonomy, construed largely as non-interference in patient decision-making (Stern, 2009). This ethos grew out of a genuine respect for persons, particularly concerning reproductive choice and disability rights. The profession's emphasis on nondirectiveness has also been understood as an effort to distance genetic counseling from the morally fraught history of eugenics (Resta, 1997).