Impact of patient education videos on genetic counseling outcomes after exome sequencing

Abstract

Objective: Growing use of clinical exome sequencing (CES) has led to an increased burden of genomic education. Self-guided educational tools can minimize the educational burden for genetic counselors (GCs). The effectiveness of these tools must be evaluated.

Methods: Parents of patients offered CES were randomized to watch educational videos before their visit or to receive routine care. Parents and GCs were surveyed about their experiences following the sessions. The responses of the video (n = 102) and no-video (n = 105) groups were compared.

Results: GCs reported no significant differences between parents in the video and no-video groups on genetics knowledge or CES knowledge. In contrast, parents' scores on genetics knowledge questions were lower in the video than no-video group (p = 0.007). Most parents reported the videos were informative, and the groups did not differ in satisfaction with GCs or decisions to have CES.

Conclusion: GCs and parents perceived the videos to be beneficial. However, lower scores on genetics knowledge questions highlight the need for careful development of educational tools.

Practice implications: Educational tools should be developed and assessed for effectiveness with the input of all stakeholders before widespread implementation. Better measures of the effectiveness of these educational tools are needed.

Keywords: Exome sequencing; Genetic counselor; Patient experience; Video education.

Figure 1.

Flow diagram of study participants. Prospective patients were screened prior to their genetic visit and randomized to be invited or not to watch the videos. Parents of patients who were offered and consented to clinical exome sequencing as part of their standard of care pre-test GC session and could read and speak English were eligible. Fifteen eligible participants were not invited at the request of the healthcare provider. Participants who consented to the study were sent a survey (S) by email or paper, according to their preference. Participants who were randomized to be invited to watch the video reported on the questionnaire whether or not they actually watched the videos. Participants were invited to complete the post-results disclosure survey one month after results were provided.

Figure 2.

Proportion of participants who correctly answered each genetic knowledge question stratified by those who were randomized to not watch the video (n=81) or watch the video (n=80). Mean summed score was 6.4 (95% CI 6.1–6.6; SD 1.0) for the no video group and 5.9 (95% CI 5.6–6.1; SD 1.3) for the video group (p-value 0.007). Intent to treat analysis. Chi squared analysis.

Figure 3.

Reported number of educational videos watched by the participants randomized to the Video intervention (a). Participant reported benefits of the educational videos (restricted to those participants who indicated they watched at least one video) (b). Abbreviations: whole exome sequencing (WES), secondary findings (SF)

Figure 4.

Genetic counselors’ assessment of the parents’ knowledge and session content stratified by intervention group. Intent to treat analysis. (a) Genetic counselors’ assessment of parents’ genetic and exome knowledge compared to a typical patient. (b) Genetic counselors’ report of skipping session content and the depth of parental questions. (c) Genetic counselors’ estimate of time spent on different aspects of the session. Chi-squared test.