The Impact of Genetic Counseling Educational Tools on Patients’ Knowledge of Molecular Testing Terminology

McDaniels, Brianna; Hianik, Rachel; Bellcross, Cecelia; Shaib, Walid Labib; Switchenko, Jeffrey M.; Dixon, Margie D.; Meisel, Jane L.; Gogineni, Keerthi; Pentz, Rebecca D.

doi:10.1007/s13187-019-01535-0

Cited by 11 publications

(6 citation statements)

References 24 publications

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“…McDaniels et al (2020) were able to improve understanding in 100% of participants by providing visuals to illustrate common genetic terms. However, visual aids, GIFs, and photographs can lead to confusion or distraction (Wynn et al, 2018), making them an important target for user testing to evaluate acceptability and utility.…”

Section: Discussionmentioning

confidence: 99%

Misunderstood terms and concepts identified through user testing of educational materials for fragile X premutation: “Not weak or fragile?”

Lincoln-Boyea

Moultrie

Biesecker

et al. 2023

Journal of Genetic Counseling

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Complicated genetic mechanisms and unpredictable health risks associated with the FMR1 premutation can result in challenges for patient education when the diagnosis is made in a newborn. From October 15, 2018, to December 10, 2021, North Carolina parents could obtain FMR1 premutation results about their newborns through a voluntary expanded newborn screening research study. The study provided confirmatory testing, parental testing, and genetic counseling. We developed web‐based educational materials to augment information about fragile X premutation conveyed by a genetic counselor. Many genetics education materials are developed for the lay population. However, relatively little research is published on how well individuals understand these materials. We conducted three rounds of iterative user testing interviews to help refine web‐based educational materials that support understanding and self‐paced learning. The participants included 25 parents with a 2‐year college degree or less and without a child identified with fragile X syndrome, premutation, or gray‐zone allele. Content analysis of interview transcripts resulted in iterative changes and ultimately saturation of findings. Across all rounds of interviews, there were two terms that were commonly misunderstood (fragile and carrier) and two terms that elicited initial misconceptions that were overcome by participants. Many also had difficulty understanding the relationship between fragile X premutation and fragile X syndrome as well as appreciating the implications of having a “fragile X gene.” Website layout, formatting, and graphics also influenced comprehension. Despite iterative changes to the content, certain issues with understandability persisted. The findings support the need for user testing to identify misconceptions that may interfere with understanding and using genetic information. Here, we describe a process used to develop and refine evidence‐based, understandable parental resources on fragile X premutation. Additionally, we provide recommendations to address ongoing educational challenges and discuss the potential impact of bias on the part of expert content developers.

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Section: Discussionmentioning

confidence: 99%

Misunderstood terms and concepts identified through user testing of educational materials for fragile X premutation: “Not weak or fragile?”

Lincoln-Boyea

Moultrie

Biesecker

et al. 2023

Journal of Genetic Counseling

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“…Each potential participant was asked to identify the county they lived in; eligible patients were those from a county that had a RUCC of 4 to 9. Verbal consent was obtained for the interview, which was then conducted during their infusion visit, as we have done in previous studies 14,33 . To ensure privacy, the researchers positioned themselves near the patient and shared the video on a touchscreen tablet PC that the patient could hold.…”

Section: Methodsmentioning

confidence: 99%

Videos improve patient understanding of chemotherapy terminology in a rural setting

Sibold

Thomson

Hianik

et al. 2021

Cancer

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Background It is critical patients understand the terms used to describe oncology treatments; however, even basic chemotherapy terminology can be misunderstood. Rural communities tend to have especially low levels of health literacy compared with nonrural communities. To address low health literacy in rural communities, this study tested rural participants' understanding of previously developed educational chemotherapy videos that were designed for an underserved urban population. Participants were also asked for feedback to determine if the videos could be improved. Methods Fifty English‐speaking patients who reside in counties classified as rural according to the Rural‐Urban Continuum Code designations (RUCC 4‐9) participated in the study. Participants were asked to define 6 chemotherapy terms before and after viewing a short, animated video explaining the term in English. Rates of correct and incorrect definitions provided by participants were also compared with previously published results from an urban cohort. Results All participants had statistically significantly higher rates of correct definitions for all 6 terms following the video intervention. Palliative chemotherapy understanding improved the most (10% correct prevideo and 76% postvideo intervention). For each video, the majority of participants (77%‐92%) suggested no changes to the videos. Conclusion Given the prevalence of low health literacy in rural communities, it is important to have effective educational interventions to improve the understanding of basic oncology‐treatment terminology. This study found that short, educational videos, originally designed for an underserved urban population, can significantly improve understanding of commonly misunderstood chemotherapy terminology in a rural setting as well. Lay Summary Chemotherapy terminology can be confusing to patients. Understanding can be especially difficult in areas with low health literacy, such as underserved urban and rural communities. To address this concern, previously developed short, animated videos describing basic chemotherapy terminology were found to improve patient understanding in an underserved urban setting. In this study, the videos were tested in a rural population and their effectiveness was established. Participants in the rural setting were significantly more likely to correctly define all 6 tested terms after watching the videos. Educational tools for high‐need populations are essential to ensure patients can understand the treatment they receive.

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“…This process integrates the interpretation to assess the chance of disease, education, and counseling” [ 90 ]. The advantage of genetic counseling is to have a better understanding of basic concepts related to genetics, such as mutation, mutation of germinative or somatic cells, early tumor markers, targeted therapy, and molecular analysis [ 91 ], and reduction of anxiety related to a possible positive test result and its long-term effect on the patient’s quality of life [ 92 ].…”

Section: Genetic Counselingmentioning

confidence: 99%

Genetic risk factors in melanoma etiopathogenesis and the role of genetic counseling: A concise review

Vranić

Šerman

Glibo

et al. 2022

Bosn J of Basic Med Sci

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Melanoma is a highly aggressive cancer originating from melanocytes. Its etiopathogenesis is strongly related to genetic, epigenetic, and environmental factors. Melanomas encountered in clinical practice are predominantly sporadic, whereas hereditary melanomas account for approximately 10% of the cases. Hereditary melanomas mainly develop due to mutations in the CDKN2A gene, which encodes two tumor suppressor proteins involved in the cell cycle regulation. CDKN2A, along with CDK4, TERT, and POT1 genes, is a high-risk gene for melanoma. Among the genes that carry a moderate risk are MC1R and MITF, whose protein products are involved in melanin synthesis. The environment also contributes to the development of melanoma. Patients at risk of melanoma should be offered genetic counseling to discuss genetic testing options and the importance of skin UV protection, avoidance of sun exposure, and regular preventive dermatological examinations. Although cancer screening cannot prevent the development of the disease, it allows for early diagnosis when the survival rate is the highest.

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The Impact of Genetic Counseling Educational Tools on Patients’ Knowledge of Molecular Testing Terminology

Cited by 11 publications

References 24 publications

Misunderstood terms and concepts identified through user testing of educational materials for fragile X premutation: “Not weak or fragile?”

Misunderstood terms and concepts identified through user testing of educational materials for fragile X premutation: “Not weak or fragile?”

Videos improve patient understanding of chemotherapy terminology in a rural setting

Genetic risk factors in melanoma etiopathogenesis and the role of genetic counseling: A concise review

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