Acceptability, Appropriateness, and Feasibility of Automated Screening Approaches and Family Communication Methods for Identification of Familial Hypercholesterolemia: Stakeholder Engagement Results from the IMPACT-FH study

Abstract

Guided by the Conceptual Model of Implementation Research, we explored the acceptability, appropriateness, and feasibility of: 1) automated screening approaches utilizing existing health data to identify those who require subsequent diagnostic evaluation for familial hypercholesterolemia (FH) and 2) family communication methods including chatbots and direct contact to communicate information about inherited risk for FH. Focus groups were conducted with 22 individuals with FH (2 groups) and 20 clinicians (3 groups). These were recorded, transcribed, and analyzed using deductive (coded to implementation outcomes) and inductive (themes based on focus group discussions) methods. All stakeholders described these initiatives as: 1) acceptable and appropriate to identify individuals with FH and communicate risk with at-risk relatives; and 2) feasible to implement in current practice. Stakeholders cited current initiatives, outside of FH (e.g., pneumonia protocols, colon cancer and breast cancer screenings), that gave them confidence for successful implementation. Stakeholders described perceived obstacles, such as nonfamiliarity with FH, that could hinder implementation and potential solutions to improve systematic uptake of these initiatives. Automated health data screening, chatbots, and direct contact approaches may be useful for patients and clinicians to improve FH diagnosis and cascade screening.

Use of a chatbot to increase uptake of cascade genetic testing

“…Understanding drivers of cascade testing and the impact of a combination of methods can inform efforts to improve accessibility to genetic testing and tailor clinical communication workflows. To explore these issues further, work refining the FST and cascade chatbot and reducing logistical barriers to cascade testing is underway as part of the NIH‐funded ‘Identification Methods, Patient Activation, and Cascade Testing for Familial Hypercholesterolemia’ (IMPACT‐FH) study at Geisinger (Campbell‐Salome et al, 2021; Jones et al, 2021). A primary goal of this multi‐aim, multiple method study centers on feedback from stakeholders (i.e., individuals and families with familial hypercholesterolemia and relevant clinicians) to improve cascade testing communication tools available to probands who have received familial hypercholesterolemia results and their relatives including a family letter, chatbot, and a direct contact program (Campbell‐Salome et al, 2021).…”

Motivating cascade testing for familial hypercholesterolemia: applying the extended parallel process model for clinician communication

“…Findings from the current study complement this pilot genetic counseling intervention by providing examples of message features future interventions can incorporate to communicate about FH risk and motivate cascade testing uptake. Finally, individuals with FH and clinicians have expressed that innovative tools such as chatbots and direct contact of at-risk relatives by clinicians would be helpful ways for clinicians to facilitate family communication [ 20 ]. However, future research should investigate how clinicians’ influence may be moderated by the mode of communication used to interact with at-risk relatives.…”

“…At-risk relatives may perceive clinicians as credible and authoritative sources of information, which can better motivate at-risk relatives to pursue cascade testing [ 15 , 16 ]. Previous research has shown that communication methods from clinicians such as “Dear Family” letters [ 17 ], digital tools like chatbots [ 18 ], and direct contact programs [ 10 , 19 ] are acceptable to patients, families, and clinicians, and can be effective for identifying more individuals with FH [ 11 , 19 , 20 ].…”