scholarly journals Genomic Health Literacy Interventions in Pediatrics: Scoping Review

10.2196/26684 ◽  
2021 ◽  
Vol 23 (12) ◽  
pp. e26684
Author(s):  
Aarushi Gupta ◽  
Joseph A Cafazzo ◽  
Maarten J IJzerman ◽  
Joost F Swart ◽  
Sebastiaan Vastert ◽  
...  
Keyword(s):  
Decision Making ◽  
Health Literacy ◽  
Patient Education ◽  
Scoping Review ◽  
Pediatric Patients ◽  
Digital Health ◽  
Health Interventions ◽  
Care Providers ◽  
Genomic Information ◽  
Pediatric Illnesses

Background The emergence of genetic and genomic sequencing approaches for pediatric patients has raised questions about the genomic health literacy levels, attitudes toward receiving genomic information, and 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 is to investigate the current levels of genomic health literacy and the attitudes toward receiving genomic information among pediatric patients and their parents. The secondary aim is to investigate patient education interventions that aim to measure and increase genomic health literacy among pediatric patients 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 (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines and protocols was completed using the following databases: MEDLINE, Embase, CINAHL, and Scopus. Our search strategy included genomic information inclusive of all genetic and genomic terms, pediatrics, and patient education. Inclusion criteria included the following: the study included genetic, genomic, or a combination of genetic and genomic information; the study population was pediatric (children and adolescents <18 years) and parents of patients with pediatric illnesses or only parents of patients with pediatric illnesses; the study included an assessment of the knowledge, attitudes, and intervention regarding genomic information; the study was conducted in the last 12 years between 2008 and 2020; and the study was in the English language. Descriptive data regarding study design, methodology, disease population, and key findings were extracted. All the findings were collated, categorized, and reported thematically. Results Of the 4618 studies, 14 studies (n=6, 43% qualitative, n=6, 43% mixed methods, and n=2, 14% quantitative) were included. Key findings were based on the following 6 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 toward 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. In addition, internet-searching plays a major role in obtaining genomic information and filling gaps in communication with health care providers. However, little is known about the capacity of pediatric patients and their parents to understand genomic information and make informed decisions based on the genomic information obtained. More research is required to inform digital health interventions and to leverage the leading best practices to educate these genomic concepts.

scholarly journals Genomic Health Literacy Interventions in Pediatrics: Scoping Review (Preprint)

2021 ◽  
Author(s):  
Aarushi Gupta ◽  
Joseph A Cafazzo ◽  
Maarten J IJzerman ◽  
Joost F Swart ◽  
Sebastiaan Vastert ◽  
...  
Keyword(s):  
Decision Making ◽  
Health Literacy ◽  
Patient Education ◽  
Scoping Review ◽  
Pediatric Patients ◽  
Digital Health ◽  
Health Interventions ◽  
Care Providers ◽  
Genomic Information ◽  
Pediatric Illnesses

BACKGROUND The emergence of genetic and genomic sequencing approaches for pediatric patients has raised questions about the genomic health literacy levels, attitudes toward receiving genomic information, and 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 is to investigate the current levels of genomic health literacy and the attitudes toward receiving genomic information among pediatric patients and their parents. The secondary aim is to investigate patient education interventions that aim to measure and increase genomic health literacy among pediatric patients 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 (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines and protocols was completed using the following databases: MEDLINE, Embase, CINAHL, and Scopus. Our search strategy included genomic information inclusive of all genetic and genomic terms, pediatrics, and patient education. Inclusion criteria included the following: the study included genetic, genomic, or a combination of genetic and genomic information; the study population was pediatric (children and adolescents &lt;18 years) and parents of patients with pediatric illnesses or only parents of patients with pediatric illnesses; the study included an assessment of the knowledge, attitudes, and intervention regarding genomic information; the study was conducted in the last 12 years between 2008 and 2020; and the study was in the English language. Descriptive data regarding study design, methodology, disease population, and key findings were extracted. All the findings were collated, categorized, and reported thematically. RESULTS Of the 4618 studies, 14 studies (n=6, 43% qualitative, n=6, 43% mixed methods, and n=2, 14% quantitative) were included. Key findings were based on the following 6 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 toward 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. In addition, internet-searching plays a major role in obtaining genomic information and filling gaps in communication with health care providers. However, little is known about the capacity of pediatric patients and their parents to understand genomic information and make informed decisions based on the genomic information obtained. More research is required to inform digital health interventions and to leverage the leading best practices to educate these genomic concepts.

scholarly journals A Scoping Review of Health Literacy Measurement Tools in the Context of Cardiovascular Health

2019 ◽  
Vol 46 (4) ◽  
pp. 677-688 ◽  
Author(s):  
Rita Wai Yu Chan ◽  
Adnan Kisa
Keyword(s):  
Health Literacy ◽  
Scoping Review ◽  
Cardiovascular Health ◽  
Measurement Tool ◽  
Care Providers ◽  
Valid Measurement ◽  
Broad Concept ◽  
Measurement Tools ◽  
Health Literacy Measurement ◽  
Print Literacy

Background. Despite the strong link between health literacy and cardiovascular health outcomes, health literacy measurements remain flawed and fragmented. There exists a gap in the knowledge when formulating a valid measurement to capture the broad concept of health literacy. The existence of various tools for health literacy measurement also hampers the availability of health literacy data. Additionally, little research is available on a valid measurement tool for cardiovascular health literacy. Objective. This study aims to provide an overview of the health literacy measurement tools used in the context of cardiovascular health. Method. A scoping review was conducted. Two electronic databases, Medline and Embase, were searched to identify studies that described a tool for the measurement of health literacy in the context of cardiovascular health. Results. After reviewing the available studies, 53 studies met the inclusion criteria. A total of 26 health literacy measurement tools were identified in the studies. Among the 26 tools, 16 used an objective measurement approach, 9 adopted a subjective approach, and 1 employed a mixed approach. Additionally, 28 studies used tools to measure print literacy, 15 studies measured print literacy and numeracy, and 5 studies measured print literacy, oral literacy, and numeracy. Conclusions. STOFHLA, TOFHLA, and REALM were the mostly commonly used tools in the selected studies. The majority of tools were based heavily on reading skills and word recognition. Researchers should focus on the development of more comprehensive and reliable health literacy measurement tool(s) specific to cardiovascular health to assist health care providers to more efficiently and accurately identify people with cardiovascular problems who have inadequate health literacy.

scholarly journals Digital health interventions in palliative care: a systematic meta-review

2021 ◽  
Vol 4 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Hannah O’Donnell ◽  
Jean Lugton ◽  
Tilly Gibson-Watt ◽  
Connie Swenson ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Systematic Reviews ◽  
Psychological Symptoms ◽  
Digital Health ◽  
Evidence Synthesis ◽  
Information Provision ◽  
Health Interventions ◽  
Meta Review

AbstractDigital health interventions (DHIs) have the potential to improve the accessibility and effectiveness of palliative care but heterogeneity amongst existing systematic reviews presents a challenge for evidence synthesis. This meta-review applied a structured search of ten databases from 2006 to 2020, revealing 21 relevant systematic reviews, encompassing 332 publications. Interventions delivered via videoconferencing (17%), electronic healthcare records (16%) and phone (13%) were most frequently described in studies within reviews. DHIs were typically used in palliative care for education (20%), symptom management (15%), decision-making (13%), information provision or management (13%) and communication (9%). Across all reviews, mostly positive impacts were reported on education, information sharing, decision-making, communication and costs. Impacts on quality of life and physical and psychological symptoms were inconclusive. Applying AMSTAR 2 criteria, most reviews were judged as low quality as they lacked a protocol or did not consider risk of bias, so findings need to be interpreted with caution.

Development of the Key Performance Indicators for Digital Health Interventions: A Scoping Review (Preprint)

2021 ◽  
Author(s):  
Maria Brenner ◽  
Arielle Weir ◽  
Margaret McCann ◽  
Carmel Doyle ◽  
Mary Hughes ◽  
...  
Keyword(s):  
Scoping Review ◽  
Performance Indicators ◽  
Delphi Study ◽  
Current Knowledge ◽  
Digital Health ◽  
Stakeholder Involvement ◽  
Key Performance Indicators ◽  
Healthcare Services ◽  
Health Interventions ◽  
Original Research

BACKGROUND Development of the Key Performance Indicators for Digital Health Interventions: A Scoping Review OBJECTIVE Digital health interventions (DHIs) offer new methods for delivering healthcare, with the potential to innovate healthcare services. Key performance indicators (KPIs) play a role in evaluation, measurement, and improvement in healthcare quality and service performance. The scoping review question was developed following an initial search to identify literature to assist in the development of KPIs for an ongoing DHI initiative. During the initial search, it became clear that there was limited literature on how to develop specific and measurable KPIs that evaluate DHIs. The aim of this scoping review was to identify current knowledge and evidence surrounding the development of KPIs for DHIs. METHODS A rigorous literature search was conducted across ten key databases: AMED - The Allied and Complementary Medicine Database, CINAHL Complete, Health Source: Nursing/Academic Edition, MEDLINE, APA PsycINFO, EMBASE, EBM Reviews - Cochrane Database of Systematic Reviews, EBM Reviews - Database of Abstracts of Reviews of Effects, EBM Reviews - Health Technology Assessment, and IEEE Xplore. A descriptive summary of the literature was performed, and thematic analysis identified important or reoccurring themes. RESULTS Five references (representing four unique publications) were eligible for the review. Of the four included publications, two were articles on original research studies of a specific DHI, and two were overviews of methods for developing DHIs (not specific to a single DHI). All the included reports discussed the involvement of stakeholders in developing KPIs for DHIs. The step of identifying and defining the KPIs was completed using various methodologies, but all centered on a form of stakeholder involvement. Potential options for stakeholder involvement for KPI identification include the use of an elicitation framework, a factorial survey approach, or a Delphi study. Most of the included articles recognised the lack of literature relating to KPI development for DHIs, compared to the breath of literature available on the development of KPIs in other fields like health or informatics CONCLUSIONS Few articles were identified, highlighting a significant gap in the evidence-based knowledge in this domain. All the included articles discussed the involvement of stakeholders in developing KPIs for DHIs, which was performed using various methodologies. The articles acknowledged a lack of literature related to KPI development for DHIs. To allow comparability between KPI initiatives and facilitate work in the field, further research would be beneficial to develop a common methodology for KPI development for DHIs.

scholarly journals Digital Interventions to Improve Health Literacy Among Parents of Children Aged 0 to 12 Years With a Health Condition: Systematic Review (Preprint)

2021 ◽  
Author(s):  
Evalotte Mörelius ◽  
Suzanne Robinson ◽  
Diana Arabiat ◽  
Lisa Whitehead
Keyword(s):  
Health Literacy ◽  
Child Health ◽  
Health Behavior ◽  
Health Outcomes ◽  
Health Knowledge ◽  
Digital Health ◽  
Health Condition ◽  
Health Interventions ◽  
Parental Health ◽  
Child Health Outcomes

BACKGROUND Parental health literacy is associated with child health outcomes. Parents are increasingly turning to the internet to obtain health information. In response, health care providers are using digital interventions to communicate information to assist parents in managing their child’s health conditions. Despite the emergence of interventions to improve parental health literacy, to date, no systematic evaluation of the effectiveness of the interventions has been undertaken. OBJECTIVE The aim of this review is to examine the effect of digital health interventions on health literacy among parents of children aged 0-12 years with a health condition. This includes evaluating parents’ engagement (use and satisfaction) with digital health interventions, the effect of these interventions on parental health knowledge and health behavior, and the subsequent impact on child health outcomes. METHODS This systematic review was registered a priori on PROSPERO (International Prospective Register of Systematic Reviews) and developed according to the Joanna Briggs Institute methodology for systematic reviews. The databases CINAHL, MEDLINE, and PsycINFO were searched for relevant literature published between January 2010 and April 2021. Studies were included if they were written in English. A total of 2 authors independently assessed the search results and performed a critical appraisal of the studies. RESULTS Following the review of 1351 abstracts, 31 (2.29%) studies were selected for full-text review. Of the 31 studies, 6 (19%) studies met the inclusion criteria. Of the 6 studies, 1 (17%) was excluded following the critical appraisal, and the 5 (83%) remaining studies were quantitative in design and included digital health interventions using web-based portals to improve parents’ health knowledge and health behavior. Owing to heterogeneity in the reported outcomes, meta-analysis was not possible, and the findings were presented in narrative form. Of the 5 studies, satisfaction was measured in 3 (60%) studies, and all the studies reported high satisfaction with the digital intervention. All the studies reported improvement in parental health literacy at postintervention as either increase in disease-specific knowledge or changes in health behavior. Of the 5 studies, only 1 (20%) study included child health outcomes, and this study reported significant improvements related to increased parental health knowledge. CONCLUSIONS In response to a pandemic such as COVID-19, there is an increased need for evidence-based digital health interventions for families of children living with health conditions. This review has shown the potential of digital health interventions to improve health knowledge and behavior among parents of young children with a health condition. However, few digital health interventions have been developed and evaluated for this population. Future studies with robust research designs are needed and should include the potential benefits of increased parent health literacy for the child.

scholarly journals Involvement of information professionals in patient- and family-centered care initiatives: a scoping review

2019 ◽  
Vol 107 (3) ◽  
Author(s):  
Antonio P. DeRosa ◽  
Becky Baltich Nelson ◽  
Diana Delgado ◽  
Keith C. Mages ◽  
Lily Martin ◽  
...  
Keyword(s):  
Decision Making ◽  
Patient Education ◽  
Information Sharing ◽  
Scoping Review ◽  
Family Centered Care ◽  
Information Professional ◽  
Centered Care ◽  
Information Professionals ◽  
Data Elements ◽  
Family Centered

Objective: The goal of this scoping review was to collect data on patient- and family-centered care (PFCC) programs and initiatives that have included the direct involvement of librarians and information professionals to determine how librarians are involved in PFCC and highlight opportunities for librarians to support PFCC programs.Methods: Systematic literature searches were conducted in seven scholarly databases in the information, medical, and social sciences. Studies were included if they (1) described initiatives presented explicitly as PFCC programs and (2) involved an information professional or librarian in the PFCC initiative or program. Based on the definition of PFCC provided by the Institute for Patient- and Family-Centered Care, the authors developed a custom code sheet to organize data elements into PFCC categories or initiatives and outcomes. Other extracted data elements included how the information professional became involved in the program and a narrative description of the initiatives or programs.Results: All included studies (n=12) identified patient education or information-sharing as an integral component of their PFCC initiatives. Librarians were noted to contribute to shared decision-making through direct patient consultation, provision of health literacy education, and information delivery to both provider and patient with the goal of fostering collaborative communication.Conclusions: The synthesis of available evidence to date suggests that librarians and information professionals should focus on patient education and information-sharing to support both patients or caregivers and clinical staff. The burgeoning efforts in participatory care and inclusion of patients in the decision-making process pose a unique opportunity for librarians and information professionals to offer more personalized information services.

scholarly journals Social Cognitive Theories and Electronic Health Design: Scoping Review (Preprint)

2018 ◽  
Author(s):  
Patricia Grace-Farfaglia
Keyword(s):  
Scoping Review ◽  
Social Cognitive ◽  
Digital Health ◽  
Health Intervention ◽  
Health Interventions ◽  
Design Features ◽  
Social Design ◽  
Web Based ◽  
Cognitive Theories ◽  
Social Cognitive Theories

BACKGROUND There are several social cognitive theories (SCTs) and models that support platform design in electronic health (eHealth) promotion trials. The rationale for this scoping review was to determine how social design features (informational aid, expressive support, gaming, and tailored content) are used to promote self-efficacy, engagement, knowledge, and behavior change. OBJECTIVE This study aimed to review a broad spectrum of digital health interventions in the literature seeking trials that use SCTs for the design of eHealth applications. METHODS The author conducted a systematic scoping review of 161 Web-based health interventions from published randomized clinical trials using 1 or more tools to address the social cognitive determinants in their website design from January 2006 to April 2016. An iterative approach was used in the selection of studies and data extraction. The studies were analyzed for quality and coded for type of social design features employed. RESULTS Expressive interaction tools were found in 48.6% (54/111) of studies categorized as a strong recommendation by the Joanna Briggs Institute criteria. Overall, less than half of the studies addressed participant social support and motivational needs (43.8%). The vast majority of studies (100%) relied on the use of the Web for delivery of informational aid and tailored content for the individual participant (75.9%). CONCLUSIONS This review fills a research gap by linking social theory to Web strategy to improve the impact and sustainability of eHealth interventions. A Digital Health Intervention Model was developed to provide a framework to enhance future Web-based health intervention design and execution.

scholarly journals Surveying the Role of Analytics in Evaluating Digital Mental Health Interventions for Transition-Aged Youth: Scoping Review (Preprint)

2019 ◽  
Author(s):  
Brian Lo ◽  
Jenny Shi ◽  
Elisa Hollenberg ◽  
Alexxa Abi-Jaoudé ◽  
Andrew Johnson ◽  
...  
Keyword(s):  
Mental Health ◽  
Scoping Review ◽  
Care Delivery ◽  
Digital Health ◽  
Controlled Trial ◽  
Health Interventions ◽  
Health Apps ◽  
Mental Health Interventions ◽  
Usage Data

BACKGROUND Consumer-facing digital health interventions provide a promising avenue to bridge gaps in mental health care delivery. To evaluate these interventions, understanding how the target population uses a solution is critical to the overall validity and reliability of the evaluation. As a result, usage data (analytics) can provide a proxy for evaluating the engagement of a solution. However, there is paucity of guidance on how usage data or analytics should be used to assess and evaluate digital mental health interventions. OBJECTIVE This review aimed to examine how usage data are collected and analyzed in evaluations of mental health mobile apps for transition-aged youth (15-29 years). METHODS A scoping review was conducted using the Arksey and O’Malley framework. A systematic search was conducted on 5 journal databases using keywords related to usage and engagement, mental health apps, and evaluation. A total of 1784 papers from 2008 to 2019 were identified and screened to ensure that they included analytics and evaluated a mental health app for transition-aged youth. After full-text screening, 49 papers were included in the analysis. RESULTS Of the 49 papers included in the analysis, 40 unique digital mental health innovations were evaluated, and about 80% (39/49) of the papers were published over the past 6 years. About 80% involved a randomized controlled trial and evaluated apps with information delivery features. There were heterogeneous findings in the concept that analytics was ascribed to, with the top 3 being engagement, adherence, and acceptability. There was also a significant spread in the number of metrics collected by each study, with 35% (17/49) of the papers collecting only 1 metric and 29% (14/49) collecting 4 or more analytic metrics. The number of modules completed, the session duration, and the number of log ins were the most common usage metrics collected. CONCLUSIONS This review of current literature identified significant variability and heterogeneity in using analytics to evaluate digital mental health interventions for transition-aged youth. The large proportion of publications from the last 6 years suggests that user analytics is increasingly being integrated into the evaluation of these apps. Numerous gaps related to selecting appropriate and relevant metrics and defining successful or high levels of engagement have been identified for future exploration. Although long-term use or adoption is an important precursor to realizing the expected benefits of an app, few studies have examined this issue. Researchers would benefit from clarification and guidance on how to measure and analyze app usage in terms of evaluating digital mental health interventions for transition-aged youth. Given the established role of adoption in the success of health information technologies, understanding how to abstract and analyze user adoption for consumer digital mental health apps is also an emerging priority.

scholarly journals Assessment of Online Patient Education Materials Designed for People with Age-Related Macular Degeneration

2020 ◽  
Author(s):  
Jennifer K Fortuna ◽  
Anne Riddering ◽  
Linda Shuster ◽  
Cassie Lopez-Jeng
Keyword(s):  
Health Literacy ◽  
Patient Education ◽  
Macular Degeneration ◽  
Grade Level ◽  
Target Audience ◽  
Age Related Macular Degeneration ◽  
Care Providers ◽  
Age Related ◽  
The Mean ◽  
Readability Level

Abstract Background: Age-related macular degeneration (AMD) is a chronic eye condition that leads to permanent vision loss in the central visual field. AMD makes reading challenging and inefficient. People with AMD often find it difficult to access, process and understand written patient education materials (PEMs). To promote health literacy, the demands of written PEMs must match the literacy capacities of the target audience. This study aims to evaluate the readability (grade level) and suitability (appropriateness) of online PEMs designed for people with AMD. Methods: Online PEMs were sourced from websites of national organizations providing patient education materials designed for people with AMD. The Flesch-Kincaid Grade Level formula and the Suitability Assessment of Materials instrument were used to assess the readability and suitability of PEMs. Descriptive statistics were used to compare online PEMs by organization based on national guidelines for readability level (≤ sixth grade) and the recommended suitability score (≥ 70%) for “superior” material.Results: One hundred online PEMs were evaluated from websites of 16 professional organizations. The mean readability level was 9.3 (range 5.0-16.6). The mean suitability score was 53% (range 18%-78%). Only six (6%) of PEMs achieved the recommended guidelines for readability level and suitability score.Conclusion: The majority of online PEMs designed for people with AMD were written above the recommended readability level, and below the suggested suitability score. To promote health literacy, the demands of written health information must match the reading capacities of the target audience. Heeding to evidence-based guidelines for providing written information to patients with low health literacy and low vision is beneficial for both patients and health care providers. Future research is warranted.

Sign in / Sign up

Export Citation Format

Share Document