Personalizing Prenatal Care Using Family Health History: Identifying a Panel of Conditions for a Novel Electronic Genetic Screening Tool

Lin, Bruce K.; Edelman, Emily; McInerney, Joseph D.; O’Leary, James; Edelson, Vaughn; Hughes, Kevin S.; Drohan, Brian; Kyler, Penny; Lloyd-Puryear, Michele A.; Scott, Joan A.; Dolan, Siobhan M.

doi:10.2217/pme.13.18

Cited by 4 publications

(2 citation statements)

References 55 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Prior to a clinical visit, patients complete a FHx questionnaire on a tablet in the waiting room or at home (Ozanne et al, n.d.). A prenatal version also has been developed but is not yet commercially available (Edelman et al, 2014; Lin et al, 2013). Of note, the founders have done extensive work to establish FHx standards for interoperability and decision support (Chipman et al, 2013; Health Level 7 Clinical Genomics Work Group, 2013).…”

Section: Resultsmentioning

confidence: 99%

Review and Comparison of Electronic Patient‐Facing Family Health History Tools

Welch

Wiley

Pflieger

et al. 2018

Journal of Genetic Counseling

View full text Add to dashboard Cite

Family health history (FHx) is one of the most important pieces of information available to help genetic counselors and other clinicians identify risk and prevent disease. Unfortunately, the collection of FHx from patients is often too time consuming to be done during a clinical visit. Fortunately, there are many electronic FHx tools designed to help patients gather and organize their own FHx information prior to a clinic visit. We conducted a review and analysis of electronic FHx tools to better understand what tools are available, to compare and contrast to each other, to highlight features of various tools, and to provide a foundation for future evaluation and comparisons across FHx tools. Through our analysis, we included and abstracted 17 patient-facing electronic FHx tools and explored these tools around four axes: organization information, family history collection and display, clinical data collected, and clinical workflow integration. We found a large number of differences among FHx tools, with no two the same. This paper provides a useful review for health care providers, researchers, and patient advocates interested in understanding the differences among the available patient-facing electronic FHx tools.

show abstract

Section: Resultsmentioning

confidence: 99%

Review and Comparison of Electronic Patient‐Facing Family Health History Tools

Welch

Wiley

Pflieger

et al. 2018

Journal of Genetic Counseling

View full text Add to dashboard Cite

show abstract

“…The Pregnancy and Health Profile (PHP): A Screening and Risk Assessment Tool collects patient‐entered FHH, personal health history, and obstetric history. The system then performs risk assessment, and presents the provider with CDS during (or potentially prior to) the first clinical encounter [Edelman et al, ; Lin et al, ; NCHPEG, ]. The goal of the PHP is to improve identification of women and babies at increased risk of genetic disease as well as other prenatal risk factors and to increase the rate at which these families are offered appropriate services and screening.…”

Section: Introductionmentioning

confidence: 99%

Implementation of an electronic genomic and family health history tool in primary prenatal care

Edelman¹,

Lin

Doksum³

et al. 2014

American J of Med Genetics Pt C

Self Cite

View full text Add to dashboard Cite

"The Pregnancy and Health Profile," (PHP) is a free genetic risk assessment software tool for primary prenatal providers that collects patient-entered family (FHH), personal, and obstetrical health history, performs risk assessment, and presents the provider with clinical decision support during the prenatal encounter. The tool is freely available for download at www.hughesriskapps.net. We evaluated the implementation of PHP in four geographically diverse clinical sites. Retrospective chart reviews were conducted for patients seen prior to the study period and for patients who used the PHP to collect data on documentation of FHH, discussion of cystic fibrosis (CF) and hemoglobinopathy (HB) carrier screening, and CF and HB interventions (tests, referrals). Five hundred pre-implementation phase and 618 implementation phase charts were reviewed. Documentation of a 3-generation FHH or pedigree improved at three sites; patient race/ethnicity at three sites, father of the baby (FOB) race/ethnicity at all sites, and ancestry for the patient and FOB at three sites (P < 0.001-0001). CF counseling improved for implementation phase patients at one site (8% vs. 48%, P < 0.0001) and CF screening/referrals at two (2% vs. 14%, P < 0.0001; 6% vs. 14%; P = 0.05). Counseling and intervention rates did not increase for HB. This preliminary study suggests that the PHP can improve documentation of FHH, race, and ancestry, as well as the compliance with current CF counseling and intervention guidelines in some prenatal clinics. Future evaluation of the PHP should include testing in a larger number of clinical environments, assessment of additional performance measures, and evaluation of the system's overall clinical utility.

show abstract

10 years later: Assessing the impact of public health efforts on the collection of family health history

Welch

O’Connell

Schiffman

2015

American J of Med Genetics Pt A

View full text Add to dashboard Cite

In 2004, a nationwide survey found that the majority (96.3%) of Americans believed their family health history (FHx) was important for their own health; however, only a third (29.8%) of respondents had ever actively collected this information. Over the past decade, government agencies, advocacy groups, professional societies, and healthcare provider organizations have aimed to improve the collection rates and utilization of FHx. This study assesses the current attitudes, knowledge, and practices of Americans regarding their FHx and whether the interventions over the past 10 years have led to any FHx-related changes. We conducted a nationwide survey of 5,258 respondents using the same measures used in the 2004 survey. Overall, there was little change in Americans knowledge and use of FHx information. While there was a statistically significant increase in respondents who have actively collected their FHx (36.9%), respondents know roughly the same or less about his or her FHx today. Furthermore, only a small fraction (2.6%) had ever collected their FHx using a web-based FHx tool. Several factors were identified which influence whether an individual actively collects his or her FHx. New FHx tools and approaches may be necessary to promote clinically meaningful improvement in FHx collection among patients.

show abstract

Personalizing Prenatal Care Using Family Health History: Identifying a Panel of Conditions for a Novel Electronic Genetic Screening Tool

Cited by 4 publications

References 55 publications

Review and Comparison of Electronic Patient‐Facing Family Health History Tools

Review and Comparison of Electronic Patient‐Facing Family Health History Tools

Implementation of an electronic genomic and family health history tool in primary prenatal care

10 years later: Assessing the impact of public health efforts on the collection of family health history

Contact Info

Product

Resources

About