Development of an electronic decision aid tool to facilitate mainstream genetic testing in ovarian cancer patients

Abstract

AbstractBackgroundMultigene panel testing is an important component of cancer treatment plans and risk assessment, but there are many different panel options and choosing the most appropriate panel can be challenging for healthcare providers and patients. Electronic tools have been proposed to help patients make informed decisions about which gene panel to choose by considering their preferences and priorities.Materials and MethodsAn electronic decision aid tool was developed in line with the International Patient Decision Aids Standards (IPDAS) collaboration. The multidisciplinary project team collaborated with an external healthcare communications agency and the MGH Cancer Center patient family advisory committee (PFAC) to develop the decision aid. Surveys of genetic counselors and patients were used to scope the content, and alpha testing was used to refine the design and content.ResultsSurveys of genetic counselors (n=12) and patients (n=228) identified common themes in discussing panel size and strategies for helping patients decide between panels and in identifying confusing terms for patients and distribution of patients’ choices. The decision aid, organized into two major sections, provides educational text, graphics and videos to guide patients through the decision-making process. Alpha testing feedback from the PFAC (n=4), genetic counselors (n=3) and a group of lay people (n=8) identified areas to improve navigation, simplify wording and improve layout.ConclusionThe decision aid developed in this study has the potential to facilitate informed decision-making by patients regarding cancer genetic testing. The distinctive feature of this decision aid is that it addresses the specific question of which multigene panel may be most suitable for the patient. Its acceptability and effectiveness will be evaluated in future studies.Implications for PracticeThe use of multigene panel testing in oncology has increased significantly, but selecting the most appropriate panel for each patient can be challenging for healthcare providers and patients. The complexity and heterogeneity of the data generated by these tests, coupled with the potential psychological, emotional, and financial impacts, make informed consent a critical component of the genetic testing process. With the expansion of germline genetic testing, the traditional model of pre-test informed consent by a genetic counselor may no longer be scalable. Electronic decision aids have shown promise in increasing patient knowledge and empowerment in the shared decision-making process. The development of a comprehensive electronic tool can facilitate patient education while maximizing patient autonomy, allowing for more personalized and informed decisions about which gene panel to choose.⍰