Papers by Kimberly Kaphingst
What knowledge is required for an informed choice related to non‐invasive prenatal screening?
Journal of Genetic Counseling, Mar 5, 2023
Non‐invasive prenatal screening (NIPS) using cell‐free DNA is a screening test for fetal aneuploi... more Non‐invasive prenatal screening (NIPS) using cell‐free DNA is a screening test for fetal aneuploidy offered by a variety of prenatal healthcare providers. Guidelines for genetic screening consistently recommend that providers facilitate informed choices, which have been associated with better psychological and clinical outcomes than uninformed choices. The multidimensional measure of informed choice (MMIC) is a widely used and theory‐based measure that combines knowledge, values, and behavior to classify decisions as either informed or uniformed. We implemented a previously validated version of the MMIC for women offered NIPS to describe the choices made by women receiving prenatal care at the Vanderbilt University Medical Center. The survey included the Ottawa Decisional Conflict scale, an outcome measure used for validation of choice categorization. We found that most women (87%) made an informed choice about NIPS. Of the women categorized as uninformed, 67% had insufficient knowledge, and 33% had an attitude discordant with their decision. The vast majority of respondents (92.5%) underwent NIPS and had a positive attitude toward screening (94.3%). Ethnicity (p = 0.04) and education (p = 0.01) were found to be significantly associated with informed choice. Decisional conflict was extremely low among all participants, with only 5.6% of all participants demonstrating any form of decisional conflict, and all being categorized as having made an informed choice. This study suggests that pre‐test counseling by a genetic counselor results in high rates of informed choice and low‐decisional conflict amongst women offered NIPS by genetic counselors, though more research is required to determine if rates of informed choice remain high when NIPS is offered by other prenatal providers.
P377: Limitations of automated approaches to utilizing the EHR to identify high-risk patients for hereditary cancer genetic testing
P683: “Estamos perdidos [We are lost]”: Exploring genetic testing decision making pathways for Latinx populations
Surgical Trainee Perspectives on the Opioid Crisis: The Influence of Explicit and Hidden Curricula
Journal of Surgical Education, Jun 1, 2023
P377: Limitations of automated approaches to utilizing the EHR to identify high-risk patients for hereditary cancer genetic testing
Genetics in Medicine Open
Journal of Health Communication, 2020
This study examines how family history-related factors and causal beliefs affect underserved wome... more This study examines how family history-related factors and causal beliefs affect underserved women's cancer risk perceptions and adherence to mammography. 1,010 patients at a primary care safety net clinic at a large urban hospital completed a survey in 2015. Of the 1,010 patients, 467 women 45 years of age or older were included in this analysis. The majority of participants were African American (68%). We built multivariable linear and logistic regression models to examine the dependent variables of cancer risk perception and mammography screening adherence. According to the results, those with a family history of cancer were significantly more likely to be adherent to mammography. Perceived importance of family health history also significantly predicted their mammography screening adherence. However, cancer risk perceptions did not predict underserved women's mammography adherence. Significant interaction effects on the associations 1) between family cancer history, cancer risk perceptions, and mammography screening adherence and 2) between race, behavioral causal beliefs, and risk perceptions were found. Findings suggest that implementing different strategies across racial groups and by cancer history may be necessary to promote regular mammography screening.
Health Communication, 2019
This study investigates how patients' privacy concerns about research uses of biospecimen and tru... more This study investigates how patients' privacy concerns about research uses of biospecimen and trust in doctors are associated with their preferences for informed consent and need for control over biospecimens in a biobank. Particularly, this study focuses on the perspectives of Communication Privacy Management theory, precision medicine, and racial health disparities. We recruited 358 women aged 40 and older stratified by race (56% African American and 44% European American). Multivariable linear regression models examined hypothesis and research questions. Individuals' privacy concerns and trust in doctors were significantly associated with their need for control. Although participants' privacy concerns were positively associated with their preference for study-specific model, trust in doctors had no effect on the preference. African American participants needed more control over their sample and were more likely to prefer study-specific model compared to European American participants. Significant interactions by race on the associations between trust and need for control and between privacy concerns and preference for study-specific model were found. These findings suggest that when developing large diverse biobanks for future studies it is important to consider privacy concerns, trust, and need for control with an understanding that there are differences in preferences by race.
Creation and beta testing of a “choose your own adventure” digital simulation to reinforce motivational interviewing skills in genetic counseling
Journal of Genetic Counseling
Standardized patients and/or role‐playing are commonly used for practicing genetic counseling (GC... more Standardized patients and/or role‐playing are commonly used for practicing genetic counseling (GC) skills. Use of digital simulation, incorporating gamification elements, would require fewer resources to sustain than standardized patients. This manuscript reports steps taken and the lessons learned from creating a digital “Choose your own adventure” simulation in which students select preferred dialog for a genetic counselor who is seeing an adult patient to discuss genetic testing for the known pathogenic variant that caused familial adenomatous polyposis (FAP) in their father. The case has three endings, one of which is attained by selecting options that are mostly consistent with motivational interviewing counseling techniques. We conducted a preliminary evaluation of our beta version among nine GC students and one educator using a survey to assess acceptability and appropriateness as well as to elicit open‐ended feedback. All participants agreed or strongly agreed with statement...
Journal of the American Medical Informatics Association, Feb 28, 2022
Population health management (PHM) is an important approach to promote wellness and deliver heal... more Population health management (PHM) is an important approach to promote wellness and deliver health care to targeted individuals who meet criteria for preventive measures or treatment. A critical component for any PHM program is a data analytics platform that can target those eligible individuals.ObjectiveThe aim of this study was to design and implement a scalable standards-based clinical decision support (CDS) approach to identify patient cohorts for PHM and maximize opportunities for multi-site dissemination.Materials and MethodsAn architecture was established to support bidirectional data exchanges between heterogeneous electronic health record (EHR) data sources, PHM systems, and CDS components. HL7 Fast Healthcare Interoperability Resources and CDS Hooks were used to facilitate interoperability and dissemination. The approach was validated by deploying the platform at multiple sites to identify patients who meet the criteria for genetic evaluation of familial cancer.ResultsThe Genetic Cancer Risk Detector (GARDE) platform was created and is comprised of four components: (1) an open-source CDS Hooks server for computing patient eligibility for PHM cohorts, (2) an open-source Population Coordinator that processes GARDE requests and communicates results to a PHM system, (3) an EHR Patient Data Repository, and (4) EHR PHM Tools to manage patients and perform outreach functions. Site-specific deployments were performed on onsite virtual machines and cloud-based Amazon Web Services.DiscussionGARDE’s component architecture establishes generalizable standards-based methods for computing PHM cohorts. Replicating deployments using one of the established deployment methods requires minimal local customization. Most of the deployment effort was related to obtaining site-specific information technology governance approvals.
Patient Education and Counseling, Mar 1, 2018
Objective-To examine the acceptability of and preliminary effects associated with a novel educati... more Objective-To examine the acceptability of and preliminary effects associated with a novel educational intervention for children at elevated risk for melanoma. The intervention incorporated information on mechanisms through which melanoma preventive behaviors mitigate risk for melanoma and was delivered to parents and children concurrently. Methods-Twenty-two parents (with a personal history of melanoma or spouse with a history of melanoma) and 33 children (mean age 11.8 years) were asked to complete questionnaires immediately prior to and after an educational session and at a one-month follow-up. Results-Both parents and children endorsed that the educational materials were acceptable. Knowledge about melanoma risk and preventive and screening behaviors increased significantly. Children's perceived risk for melanoma increased significantly, while parents' perceptions of children's risk started at a higher level and remained constant. There were significant increases in reported engagement in sun protective behaviors.
Journal of Genetic Counseling, Dec 23, 2011
An informed choice about health-related direct-to-consumer genetic testing (DTCGT) requires knowl... more An informed choice about health-related direct-to-consumer genetic testing (DTCGT) requires knowledge of potential benefits, risks, and limitations. To understand the information that potential consumers of DTCGT services are exposed to on company websites, we conducted a content analysis of 23 health-related DTCGT websites. Results revealed that benefit statements outweighed risk and limitation statements 6 to 1. The most frequently described benefits were 1) disease prevention, 2) consumer education, 3) personalized medical recommendations, and 4) the ability to make health decisions. Thirty-five percent of websites also presented at least one risk of testing. Seventy-eight percent of websites mentioned at least one limitation of testing. Based on this information, potential consumers might get an inaccurate picture of genetic testing which could impact their ability to make an informed decision. Practices that enhance the presentation of balanced information on DTCGT company websites should be encouraged.
Journal of Genetic Counseling, Jul 16, 2016
Genetic test results have medical implications beyond the patient that extend to biological famil... more Genetic test results have medical implications beyond the patient that extend to biological family members. We examined psychosocial and clinical factors associated with communication of genetic test results within families. Women (N=1080) diagnosed with breast cancer at age 40 or younger completed an online survey; 920 women that reported prior cancer genetic testing were included in analysis. We examined the proportion of immediate family members to whom they communicated genetic test results, and built multivariable regression models to examine clinical and psychosocial variables associated with the proportion score. Participants were most likely to communicate test results to their mother (83%) and least likely to their son (45%). Participants who carried a BRCA mutation (OR=1.34; 95% CI = 1.06, 1.70), had higher interest in genomic information (OR=1.55; 95% CI = 1.26, 1.91) and lower genetic worry (OR=0.91; 95% CI = 0.86, 0.96) communicated genetic test results to a greater proportion of their immediate family members. Participants with a BRCA1/2 mutation shared their genetic test results with more male family members (OR=1.72; 95% CI = 1.02, 2.89). Our findings suggest that patients with high worry about genetic risks, low interest in genomic information, or receive a negative genetic test result will likely need additional support to encourage family communication.
Patient Willingness to Dispose of Leftover Opioids After Surgery
Annals of surgery open, Dec 1, 2022
Objectives: We examined how convenience and financial incentives influence patient willingness to... more Objectives: We examined how convenience and financial incentives influence patient willingness to dispose of leftover prescription opioids after surgery. We also identified additional barriers and facilitators to disposal. Background: In the United States, up to 70% of surgical patients are prescribed opioids and up to 92% will have leftover tablets. Most do not dispose of leftover opioids, increasing the risk for opioid-related harm. Current interventions promoting opioid disposal have shown mixed success. Methods: We conducted a mixed methods study using a standard gamble survey and semi-structured interviews. Participants estimated willingness to dispose in 16 scenarios with varying convenience (time requirements of <5, 15, 30, and 60 minutes) and financial incentives ($0, $5, $25, $50). We estimated the likelihood of disposal using a multivariable mixed effects modified Poisson regression model. Semi-structured interviews explored how convenience, financial incentives, and other barriers and facilitators influenced decisions to dispose. Results: Fifty-five participants were surveyed and 42 were interviewed. Most were willing to dispose when the time required was <15 minutes. Few were willing to dispose if the process required 60 minutes, although a $50 financial incentive increased rates from 9% to 36%. Anxiety about future pain, opioid scarcity, recreational use, family safety, moral beliefs, addiction, theft, and environmental harm also influenced decision-making. Conclusions: Interventions promoting opioid disposal should focus on convenience, but the selective use of financial incentives can be effective. Tailoring interventions to individual barriers and facilitators could also increase disposal rates.
Journal of Genetic Counseling, Nov 3, 2020
Cancer-related Genetic Testing (hereafter CGT) has transformed cancer prevention, treatment, and ... more Cancer-related Genetic Testing (hereafter CGT) has transformed cancer prevention, treatment, and care. Researchers debate whether diffusion and use of genetic testing will reduce or widen cancer health disparities through effects on improving or worsening cancer-related mortality, morbidity, and outcomes that disproportionately affect racial and ethnic minority populations. Cancer disparities by race and ethnicity have been associated with social determinants of health and healthcare access and experience. However, little research has explored how communication about CGT may contribute to these disparities. As such, the goal of this study was to characterize the literature published between 2010 and 2017 on communication about CGT among Latinx populations through a secondary analysis of papers identified in a larger scoping review. We found thirteen (2.5%) of 513 papers in the parent scoping review had over 50% Latinx representation; only nine of these (69%) had fully Latinx comprised study cohorts. The majority of the 13 identified studies (n=9) were conducted to assess knowledge and attitudes regarding CGT. Most studies included services or materials in both Spanish and English. Few studies assessed language preference or acculturation or compared outcomes across sub-ethnicities. We identified opportunities for researchers to explore differences in outcomes by language preference and acculturation, and between sub-ethnicities in future studies. Leveraging a greater understanding of the heterogeneity within the Latinx population will allow genetics researchers and providers to improve utilization of CGT and therein health outcomes to advance health equity.
Journal of Health Communication, Dec 26, 2017
Precision medicine (PM) draws upon individual biological and psychosocial factors to create a per... more Precision medicine (PM) draws upon individual biological and psychosocial factors to create a personalized approach to healthcare. To date, little is known about how healthcare consumers will respond to such highly personalized guidance and treatment. The assumption is that responses will generally be favorable; yet in the media and in online public discussions about PM, concerns have been raised about invasions of privacy and autonomy. Findings from the tailoring literature-relevant because PM is, in a sense, "hypertailoring"-similarly suggest a potential for provoking unintended consequences such as personalization reactance, wherein perceived threat to one's privacy or freedom can lead to rejection of the personalized message or its source. Here, we review extant tailoring and other relevant research to identify challenges that could arise in PM communication. We then draw upon a patient-centered communication perspective to highlight elements of the communication process wherein resistance could be mitigated. This review aims to provide preliminary guidance for practitioners when communicating with patients and healthcare consumers about PM, as well as point scholars toward fruitful topics for research in this emerging health communication area. PM is a personalized approach to healthcare based on the application of "a wide range of biomedical information-including molecular, genomic, cellular, clinical, behavioral, physiological, and environmental parameters" (Collins & Varmus, 2015, p. 794). One dimension of PM entails using such data to provide patients with individualized recommendations for prevention and treatment. PM has been heralded as an important direction for modern medicine (Jameson & Longo, 2015; Khoury & Evans, 2015), and thanks to ever-accelerating innovations in both medicine and information technology, the implementation of PM has already begun (Frey, Bernstam, & Denny, 2016; Khoury, Iademarco, & Riley, 2016). As PM approaches unfold in clinical care, healthcare providers must be prepared to address challenges that could arise, including those that can be provoked-or mitigated-during communication processes (Scherr et al., 2017). Despite the widespread discussion of PM in health and medical spheres, current public knowledge of PM is likely to be limited. When data-gathering efforts ramp up, healthcare providers may increasingly solicit highly personal information from patients or make recommendations based on personal information that has been administratively gathered (with or without the patient's awareness). However, individuals might not understand why they are being asked to answer a higher volume of personal questions, to share the results of genetic testing, to use wearable devices, or to donate biospecimens for research trials. People might not be aware of the possible benefits of participation in each case, nor what the implications and potential risks are in terms of data privacy or receiving information they may not be prepared to process. Transparency, accountability, and trustworthiness have been flagged as key objectives in the launch of PM initiatives and interventions (National Research Council, 2011); however, guidelines for communication in order to achieve these aims must still be developed. Although a full implementation of PM and its accompanying communication strategies is still materializing, extant research from relevant domains can provide insight. Numerous tailoring studies have tested how people respond to the use of their personal characteristics to make health recommendations (e.g.,
The Diabetes Educator, Jan 13, 2016
Purpose-The purpose of this study was to investigate the relationship between health literacy and... more Purpose-The purpose of this study was to investigate the relationship between health literacy and overall medication nonadherence, unintentional nonadherence, and intentional nonadherence. Limited health literacy may be associated with worse diabetes outcomes, but the literature shows mixed results and mechanisms remain unclear. Medication adherence is associated with diabetes outcomes and may be a mediating factor. Distinguishing between unintentional and intentional nonadherence may elucidate the relationship between health literacy and nonadherence in patients with type 2 diabetes. Methods-Cross-sectional study of 208 patients with type 2 diabetes recruited from a primary care clinic in St. Louis, MO. Information was obtained from written questionnaire and patient medical records. Bivariate and multivariable regression were used to examine predictors of medication nonadherence. Results-The majority of patients in the study were low-income, publicly insured, and African American, with limited health literacy and a high school/GED education or less. In multivariable models, limited health literacy was significantly associated with increased unintentional nonadherence, but not intentional nonadherence. Conclusions-Results suggest differences in factors affecting intentional and unintentional nonadherence. The findings also suggest interventions are needed to decrease unintentional nonadherence among patients with type 2 diabetes and limited health literacy. Efforts to address
Literacy demands of product information intended to supplement television direct-to-consumer prescription drug advertisements
Patient Education and Counseling, Nov 1, 2004
The US Food and Drug Administration (FDA) allows television direct-to-consumer (DTC) prescription... more The US Food and Drug Administration (FDA) allows television direct-to-consumer (DTC) prescription drug advertisements that do not fully disclose drug risks if the ads include "adequate provision" for dissemination of the drug's approved labeling. This requirement can be met in part by referring consumers to multiple text sources of product labeling. This study was designed to assess the materials to which consumers were referred in 23 DTC television advertisements. SMOG assessments showed that the average reading grade levels were in the high school range for the main body sections of the materials and college-level range for the brief summary sections. The Suitability Assessment of Materials (SAM) instrument identified specific difficulties with the materials, including content, graphics, layout, and typography features. Stronger plain language requirements are recommended. Health care providers should be aware that patients who ask about an advertised drug might not have the full information required to make an informed decision.
PEC Innovation, Dec 1, 2023
ObjectiveWe sought to understand BRCA previvors' perceptions of communication with genetic counse... more ObjectiveWe sought to understand BRCA previvors' perceptions of communication with genetic counselors and other healthcare providers.MethodsWe conducted 16 qualitative interviews and utilized thematic analysis to develop patterns present in the narratives of previvors.ResultsInterviews with previvors suggest genetic counselors and other providers often make assumptions about previvors' family planning and treatment needs based on perceived gender, age, and sexual orientation.ConclusionBRCA patients require individualized attention when planning for their future and making healthcare decisions and we argue that implementing patient-centered care practices into the communication process can provide a higher quality of care.InnovationThis study offers an innovative lens through which scholars and healthcare providers may examine the experiences of BRCA previvors as they seek adequate care. Asking previvors to explain their perceptions of conversations with genetic counselors and healthcare providers offers insight into the communicative process of seeking care rather than the health outcomes of the care itself. Our findings suggest biases among providers related to gender, age, and sexual orientation are concerning elements of family planning communication that potentially interrupt previvors' abilities to express their care needs in a safe environment. We argue for an increased awareness of, and advocacy for, more inclusive conversations regarding treatment and family planning decisions.
Variability in conceptualizations and measurement of genetic literacy
PEC Innovation, Dec 1, 2023
Public Health Genomics, 2023
Introduction: Many individuals who previously received negative genetic test results are eligible... more Introduction: Many individuals who previously received negative genetic test results are eligible for updated testing. This study examined intention to communicate updated genetic test results to relatives in participants who previously received negative genetic test results. Methods: Women with a personal or family history of breast or ovarian cancer who tested negative for BRCA1/2 before 2013 were enrolled between April 2018 and October 2019. Proportions were calculated to assess intention to communicate updated genetic test results to living immediate family, extended family, and all family. Potential predictors of intentions from the theory of planned behavior (attitudes, subjective norms, perceived behavioral control) were assessed. The three outcomes were analyzed using generalized linear models with a quasi-binomial probability distribution. Results: 110 women completed the baseline assessment prior to updated testing. Participants intended to communicate genetic test results to 90% of immediate family, 51% of extended family, and 66% of all living relatives. Participants with higher subjective norms (aOR = 1.93, 95% CI: 1.08-3.57) had higher intentions to communicate genetic test results to extended family, while participants with more positive attitudes (aOR = 1.27, 95% CI: 1.01-1.60) had higher intentions to communicate to all family. Placing higher importance on genetic information was associated with higher intentions to communicate to immediate family (aOR = 1.40, 95% CI: 1.06-1.83). Lower subjective numeracy was associated with higher intentions to communicate to extended family (aOR = 0.50, 95% CI: 0.32-0.76). Conclusion: Attitudes and subjective norms were predictors of intention to communicate updated genetic information to at-risk biological relatives, and predictors may vary by degree of relationship.
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Papers by Kimberly Kaphingst