A Delphi study to prioritize genetic counseling outcomes: What matters most

Krista A Redlinger-Grosse, Ian M. MacFarlane, Deborah Cragun, Heather Zierhut

Research output: Contribution to journalArticlepeer-review

Abstract

Research on genetic counseling outcomes has examined a range of metrics many that differ in quality and extent of psychometric assessment and in some cases fail to encompass potential benefits of genetic counseling for patients. Although a variety of possible outcomes have been explored, selecting the most important or relevant outcomes and identifying well-validated measures remain challenging. An online, modified Delphi method was used to prioritize genetic counseling outcomes from the viewpoint of individuals from four stakeholder groups – clinical genetic counselors, outcome researchers, genetic counseling training directors, and genetic counseling consumers/advocates. A survey of 181 genetic counseling outcomes were rated based on perceived importance and then sorted and categorized using the Framework for Outcomes of Clinical Communication Services in Genetic Counseling (FOCUS-GC) framework. Three of the FOCUS-GC domains (Process, Patient Care Experience, and Patient Changes) were assessed as most important, while none of the most highly rated outcomes fell into the domains of Patient Health or Family Changes. The majority of outcomes deemed most important by stakeholder groups were within the process domain. When looking at the proportion of outcomes that overlapped with the consumer group, clinical genetic counselors had the highest degree of similarity with consumers when looking at the high relative importance band outcomes (61.1% overlap), followed by training directors (58.3%), and outcome researchers (41.7%). Variability in importance according to stakeholder groups was an important consideration and prioritizing outcomes was challenging given that the majority of outcomes were rated as important. Working to bridge the realities of clinical care and fundamental differences in the viewpoints and priorities of genetic counseling research directions is an area for future exploration.

Original languageEnglish (US)
JournalJournal of Genetic Counseling
DOIs
StateAccepted/In press - 2020

Bibliographical note

Funding Information:
This work was funded through the National Society of Genetic Counselors and was associated with the Genetic Counseling Outcomes Task Force. We thank the participants for their expertise and thoughtful responses to open‐ended questions which helped us better understand the quantitative data in this manuscript.

Keywords

  • attitudes
  • Delphi Study
  • genetic counseling
  • genetic counseling stakeholders
  • intervention
  • outcomes
  • process measures

PubMed: MeSH publication types

  • Journal Article

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