JMIR Publications

ABSTRACT

Background:

The emergence of genetic and genomic sequencing approaches for pediatric patients has raised questions about genomic health literacy levels, attitudes towards receiving genomic information, and the use of this information to inform treatment decisions by pediatric patients and their parents. However, the methods to educate pediatric patients and their parents about genomic concepts through digital health interventions have not been well established.

Objective:

The primary objective of this scoping review was to investigate current levels of genomic health literacy and attitudes towards receiving genomic information amongst pediatric populations, and their parents. The secondary aim was to investigate patient education interventions that aim to measure and increase genomic health literacy amongst pediatric populations and their parents. The findings from this review will be used to inform future digital health interventions for patient education.

Methods:

A scoping review using PRISMA-ScR guidelines and protocols was completed using the following databases: MEDLINE, EMBASE, CINAHL, SCOPUS. Our search strategy included genomic data inclusive of all genetic and genomic terms, pediatrics, and patient education. Inclusion criteria included: 1) study includes genetic, genomic, or combination of genetic and genomic data, 2) study population was pediatric (including children and adolescents under the age of 18) and/or parents of patients with pediatric illnesses, 3) study included an assessment of the knowledge, attitudes, and/or intervention regarding genomic information, 4) the study was conducted in the last twelve years between 2008-2020, 5) English language. Descriptive data regarding study design, methodology, disease population and key findings were extracted. All findings were collated, categorized, and reported thematically.

Results:

14 out of 4618 (6 qualitative, 6 mixed-methods, 2 quantitative) studies were included. Papers were reviewed and analyzed, and key findings were based on the following six themes: knowledge of genomic concepts, use of the internet and social media for genomic information, use of genomic information for decision-making, hopes and attitudes towards receiving genomic information, experiences with genetic counseling, and interventions to improve genomic knowledge.

Conclusions:

This review identified that older age is related to the capacity of understanding genomic concepts, increased genomic health literacy levels, and the perceived ability to participate in decision making related to genomic information. Also, internet searching plays a large role in obtaining genomic information and to fill gaps in communication with HCPs. However, there is still little known about the capacity of pediatric patients and their parents to understand genomic information and make informed decisions based on genomic information. More research is required to inform digital health interventions and best practices to educate these populations about genomic concepts. Clinical Trial: N/A