Preconception expanded carrier screening: Impact of information presented by text or video on genetic knowledge and attitudes

Abstract

Preconception expanded carrier screening (ECS) aims to identify couples with an increased risk of having a child with an autosomal recessive (AR) disorder before pregnancy, thereby enabling reproductive choices. Genetic knowledge and experiential knowledge both influence the uptake of ECS. As people in the general public often lack such knowledge, it is essential to provide appropriate and understandable information when offering ECS. This study investigated the effect of an educational video, compared to an educational text, on the knowledge and attitudes toward preconception ECS in the general population. Both the text and video consisted of a brief educational summary on AR inheritance and on the type of disorders included in ECS, with the progressive neurodegenerative condition mucopolysaccharidosis type III (MPS III) as an example. Participants in the reproductive age were invited in collaboration with a research agency. Respondents (N = 789) were offered an educational video prior to completing an online questionnaire that examined genetic knowledge, the perceived severity of MPS III, perceived risk, and attitudes toward ECS. Outcomes were compared to reference data collected previously in which respondents had been offered an educational text (N = 781). We first again studied the attitudes toward ECS in a smaller educational text group (N = 266) in order to assess whether attitudes had changed over time due to increased media coverage on ECS, which did not reveal any significant changes. Respondents who were offered the video had a better genetic knowledge, perceived MPS III as more severe, perceived their risks higher and were more likely to participate in ECS compared to those who were offered text. Online video may well be used as supportive tool to the genetic counseling process, creating more knowledge on ECS and severe genetic disorders included in preconception screening panels.

Genetic Counselling Needs for Reproductive Genetic Carrier Screening: A Scoping Review

“…A number of studies recognized the utility of alternatives to traditional face-to-face genetic counselling. Alternative methods such as written information leaflets, videos, and telehealth were used or mentioned by 46% of studies involving all stakeholder groups for the purposes of pre-test counselling [ 24 , 26 , 27 , 28 , 31 , 32 , 33 , 36 , 37 , 38 , 39 , 40 , 44 , 49 , 53 , 54 , 59 ]. In contrast, only 16% of studies mentioned or used similar alternative methods in relation to post-test counselling for RGCS [ 24 , 25 , 30 , 31 , 39 , 40 ] with all stakeholders represented, bar the prospective users.…”

“…A number of studies successfully utilized supporting resources, such as videos and information leaflets, as part of the pre-test counselling process [ 24 , 26 , 27 , 28 , 32 , 33 , 36 , 37 , 38 , 39 , 40 , 44 , 48 , 49 , 53 , 54 , 59 ]. In some cases, result delivery and post-test counselling were performed by letter [ 36 , 43 ].…”

Antimicrobial-resistant bacteria in food: which behaviour change strategies increase consumers’ risk awareness and preventive food-handling behaviour?

“…Alternatively, it might be possible that an audio-visual video is more likely to be retained compared to a single visual text with a pictograph. Hence, providing the same risk information as a short video might lead to an increase in risk perception (Conijn et al, 2020 ; Garg, Camp, Connelly, & Lorenzen-Huber, 2012 ). Remarkably, participants evaluated the personalised risk message positively, although it did not achieve the intended effect on risk perception.…”

Expanded carrier screening for reproductive risk assessment: An evidence‐based practice guideline from the National Society of Genetic Counselors

“…Informed consent methods for ECS should be accessible for all, incorporating closed captions in video content, image descriptors for photo content, language translation as needed for written content, and referrals to clinical genetics specialists upon request and/ or when the need is identified. Pre-test video education content in particular has been demonstrated to promote patient understanding of ECS (Conijn et al, 2021;Goodhue et al, 2019;Hardy et al, 2018).…”

“…Informed consent methods for ECS should be accessible for all, incorporating closed captions in video content, image descriptors for photo content, language translation as needed for written content, and referrals to clinical genetics specialists upon request and/or when the need is identified. Pre‐test video education content in particular has been demonstrated to promote patient understanding of ECS (Conijn et al, 2021; Goodhue et al, 2019; Hardy et al, 2018). While video education and other interactive computer modules may not be suitable for all patients (Fan et al, 2018), these and other engaging virtual models may represent a preferred option over traditional text‐based education.…”