Evaluating and Improving a Novel Toolkit for Implementation and Optimization of Lynch Syndrome Universal Tumor Screening

Individuals with Lynch syndrome (LS) have a hereditary predisposition to colorectal cancer (CRC), endometrial cancer (EC), and several additional cancer types. Universal tumor screening (UTS) is a systematic approach that increases identification of LS so affected individuals can benefit from targeted therapies and risk-reduction strategies to decrease cancer- related morbidity and mortality. Despite the known benefits of UTS, the practice is widely underutilized, likely due to the complexity of implementation and optimization. We developed a novel evidence-based toolkit to help institutions implement and optimize UTS programs. As part of an iterative evaluation process, we obtained feedback on the toolkit through interviews with two “Experts” who previously played a primary role in UTS implementation and four “Non- Experts” who had not been responsible for implementing UTS. All participants completed a survey after the interview to assess the acceptability and appropriateness of the toolkit using the Acceptability of Intervention Measure (AIM) and Intervention Appropriateness Measure (IAM). Constructive feedback from the “Experts” and “Non-Experts” was classified into one of three categories: “Content”, “Usability”, and “Visual Appeal”. The feedback was further classified into one of five categories to assist with the revision process: “Doing”, “Needs Discussion”, “Unsure”, “Not Doing”, “Mixed Feedback”. Participants’ survey responses to the AIM and IAM were averaged. The majority of feedback provided was constructive and most positive feedback came from “Non-Experts”. Most feedback from “Experts” related to content, while “Non- Experts” provided relatively equal amounts of feedback relating to content, usability, and visual appeal. Throughout and after the evaluation and revision process, 163 changes were made to the toolkit. The toolkit was considered acceptable and appropriate by all participants with average AIM and IAM scores (on a scale of 1-5) of 4.33 and 4.25, respectively. Learning that the toolkit is acceptable and appropriate makes us more confident that it will be utilized to help with successful implementation and optimization of UTS programs that can reduce the cancer burden associated with LS