Promoting guideline-based cancer genetic risk assessment for hereditary breast and ovarian cancer in ethnically and geographically diverse cancer survivors: Rationale and design of a 3-arm randomized controlled trial

Kinney, Anita Y.; Howell, R. D.; Ruckman, Rachel; McDougall, Jean A.; Boyce, Tawny; Vicuña, Belinda; Lee, Ji‐Hyun; Guest, Dolores D.; Rycroft, Randi; Valverde, Patricia; Gallegos, Kristina M.; Meisner, Angela L. W.; Wiggins, Charles L.; Stroup, Antoinette M.; Paddock, Lisa E.; Walters, Scott T.

doi:10.1016/j.cct.2018.09.005

Cited by 14 publications

(25 citation statements)

References 143 publications

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“…Prior studies have identified barriers to genetic testing/care including cost/insurance, access and referral bias, cultural factors, competing life concerns, language, and concern for discrimination and mistrust 27–30 . Many groups have designed interventions to mitigate some of these factors including culturally targeted, multimodal interventions 31–41 . However, other studies have found that disparities in genetic testing are not fully accounted for by socioeconomic factors, risk perception, attitudes and referral bias, 42 and there is a need to better understand all aspects of genetic testing to ameliorate these disparities.…”

Section: Discussionmentioning

confidence: 99%

“…[27][28][29][30] Many groups have designed interventions to mitigate some of these factors including culturally targeted, multimodal interventions. [31][32][33][34][35][36][37][38][39][40][41] However, other studies have found that disparities in genetic testing are not fully accounted for by socioeconomic factors, risk perception, attitudes and referral bias, 42 and there is a need to better understand all aspects of genetic testing to ameliorate these disparities.…”

Section: Discussionmentioning

confidence: 99%

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Disparities in cancer genetics care by race/ethnicity among pan‐cancer patients with pathogenic germline variants

Liu

Maio

Kemel

et al. 2022

Cancer

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Genetic testing is becoming an important part of cancer care, and we wanted to see if genetics care was different between individuals of different backgrounds.• We studied 15,775 diverse patients with cancer who had genetic testing using a test called MSK-IMPACT that was covered by research funding.• Clinically important genetic findings were high in all groups. • However, Black patients were less likely to get recommended counseling compared to White patients. • Even after removing many roadblocks, non-White and especially Black patients were less likely to get recommended genetics care, which may affect their cancer treatments and families.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Disparities in cancer genetics care by race/ethnicity among pan‐cancer patients with pathogenic germline variants

Liu

Maio

Kemel

et al. 2022

Cancer

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“…More recently, there has been increased discussion regarding a potential role for incorporating more persuasion or directionality within GC, around both proband testing as well as family communication and cascade testing (Ash, 2017; de Geus et al, 2016; Kinney et al, 2018; Kruger et al, 2019; Winchester et al, 2022). The rationale for “persuasive GC” is based on the premise that some genetic tests provide actionable information that would clearly benefit patients and families.…”

Section: Introductionmentioning

confidence: 99%

Motivational interviewing for genetic counseling: A unified framework for persuasive and equipoise conversations

Resnicow

Delacroix

Chen

et al. 2022

Journal of Genetic Counseling

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Genetic counselors (GCs) have traditionally been trained to adopt a position of equipoise or clinical neutrality. They provide information, answer questions, address barriers, and engage in shared decision‐making, but generally, they do not prescribe a genetic test. Historically, GCs have generally been trained not to persuade the ambivalent or resistant patient. More recently, however, there has been discussion regarding when a greater degree of persuasion or directionality may be appropriate within genetic counseling (GC) and what role MI may play in this process. The role for “persuasive GC” is based on the premise that some genetic tests provide actionable information that would clearly benefit patients and families by impacting treatment or surveillance. For other tests, the benefits are less clear as they do not directly impact patient care or the benefits may be more subjective in nature, driven by patient values or psychological needs. For the former, we propose that GCs may adopt a more persuasive clinical approach while for the latter, a more traditional equipoise stance may be more appropriate. We suggest that motivational interviewing (MI) could serve as a unifying counseling model that allows GCs to handle both persuasive and equipoise encounters. For clearly beneficial tests, while directional, the MI encounter can still be non‐directive, autonomy‐supportive, and patient‐centered. MI can also be adapted for equipoise situations, for example, placing less emphasis on eliciting and strengthening change talk as that is more a behavior change strategy than a shared decision‐making strategy. The core principles and strategies of MI, such as autonomy support, evocation, open questions, reflective listening, and affirmation would apply to both persuasive and equipoise encounters. Key issues that merit discussion include how best to train GCs both during their initial and post‐graduate education.

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“…MI has been used effectively in a variety of healthcare settings to overcome obstacles such as lack of interest, distance from services, and inconvenience of time (Kinney et al., 2014, 2018; Menon et al., 2011; Miller et al., 2017; Rasouli et. al, 2017).…”

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

Journal of Genetic Counseling

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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.

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Promoting guideline-based cancer genetic risk assessment for hereditary breast and ovarian cancer in ethnically and geographically diverse cancer survivors: Rationale and design of a 3-arm randomized controlled trial

Abstract: NCT03326713; clinicaltrials.gov.

Cited by 14 publications

References 143 publications

Disparities in cancer genetics care by race/ethnicity among pan‐cancer patients with pathogenic germline variants

Disparities in cancer genetics care by race/ethnicity among pan‐cancer patients with pathogenic germline variants

Motivational interviewing for genetic counseling: A unified framework for persuasive and equipoise conversations

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

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