A framework to build capacity for a reflex-testing program for Lynch syndrome

Genet Med. 2019 Jun;21(6):1381-1389. doi: 10.1038/s41436-018-0342-8. Epub 2018 Oct 22.

Abstract

Purpose: Lynch syndrome (LS) is the most common inherited cause of colorectal cancer. Although testing all colorectal tumors for LS is recommended, the uptake of reflex-testing programs within health systems has been limited. This multipronged study describes the design of a provincial program for reflex testing in Ontario, Canada.

Methods: We recruited key stakeholders to participate in qualitative interviews to explore the barriers and facilitators to the implementation of a reflex-testing program. Data were analyzed in an iterative manner, key themes identified, and a framework for a proposed program developed.

Results: Twenty-six key informants participated in our interviews, and several themes were identified. These included providing education for stakeholders (patients, primary care providers, surgeons); challenges with sustaining various resources (laboratory costs, increased workload for pathologists); ensuring consistency of reporting test results; and developing a plan to measure program success. Using these themes, a framework for the reflex-testing program was developed. At a subsequent stakeholder meeting, the framework was refined, and recommendations were identified.

Conclusions: This study identifies factors to ensure the effective implementation of a population-level program for reflex LS testing. The final product is a prototype that can be utilized in other jurisdictions, taking into account local environmental considerations.

Keywords: Lynch syndrome; cancer prevention; reflex testing; screening.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Attitude of Health Personnel
  • Capacity Building / methods
  • Colorectal Neoplasms / diagnosis
  • Colorectal Neoplasms, Hereditary Nonpolyposis / diagnosis*
  • Colorectal Neoplasms, Hereditary Nonpolyposis / physiopathology
  • Early Detection of Cancer / methods*
  • Female
  • Health Personnel
  • Humans
  • Male
  • Middle Aged
  • Reflex / physiology
  • Stakeholder Participation
  • Surveys and Questionnaires