Consumer-oriented (patient and family) outcomes from nursing in genomics: a scoping review of the literature (2012-2022)

Front Genet. 2024 Nov 29:15:1481948. doi: 10.3389/fgene.2024.1481948. eCollection 2024.

Abstract

Introduction: Genomics is a lifespan competency that is important for improving health outcomes for individuals, families, and communities. Nurses play a key role in genomic healthcare and realizing the potential of the genomic era.

Methods: We aimed to chart the current state of genomics in nursing by conducting a systematic scoping review of the literature in four databases (2012-2022). We categorized included articles using the Cochrane Collaboration outcome domains/sub-domains and identify key topical areas.

Results: Of 8532 retrieved articles, we identified 67 articles on 'consumer-oriented outcomes' (patient and family) for analysis. Identified articles primarily centered on themes of genetic testing and screening. Most studies reported non-interventional studies 39/67 (58%) and more than half were from the U.S.A. 34/67 (51%). Six of nine subdomains were reported on. The "patient involvement in care" subdomain was the most commonly reported subdomain (17/67, 25%) while "treatment outcomes" had the fewest reports (5/67, 8%). Overall, consumers (i.e., patients and families) had high satisfaction with nurse-led interventions.

Discussion: Synthesizing findings revealed key knowledge gaps and unmet patient informational needs around genetic testing and decision support. There are opportunities for interprofessional collaboration between nursing and genetic counseling to meet the mounting demand for genomic healthcare and develop more person-centered approaches to genetic counseling and decisional support. Findings support the need for interventional studies and enhanced focus on implementation for nurses to improve consumer-oriented outcomes.

Keywords: cascade screening; decision making; family history; genetic counseling; genetic testing; nursing practice; oncology nursing; precision healthcare.

Publication types

  • Systematic Review

Grants and funding

The author(s) declare that financial support was received for the research, authorship, and/or publication of this article. AD receives funding support from the Josiah Macy Jr. Foundation and the National Institutes of Health Eunice Kennedy Shriver National Institute of Child Health and Human Development (1P50HD104224-01, “Massachusetts General Hospital – Harvard Center for Reproductive Medicine”). J. T. Thomas received doctoral study funding from Knowledge Economy Skills (KESS2) Scholarship and the Genomics Partnership Wales.