Using consistent terms in precision medicine to eliminate patient confusion.

Abstract

e24164 Background: Biomarker testing has advanced precision medicine in cancer. However, not all eligible patients benefit from biomarker-driven therapies due to suboptimal testing rates. A working group of 20 patient advocacy groups representing solid/hematologic malignancies, three professional societies, and 18 pharmaceutical and diagnostics companies identified patient confusion inconsistent testing terms as a possible contributing factor to biomarker testing underutilization. The group aimed to address patients’ confusion by identifying and adopting consistent, plain language terms for biomarker and germline genetic testing that are applicable across cancer types. Methods: Following a stakeholder roundtable discussion on barriers to precision medicine, working group members participated in interviews on their goals for consistent testing terminology for their constituents. We then conducted a framework analysis covering five themes: available testing by cancer type; purpose of test; biospecimen source; terms used in patient education; and preferred plain language term. Working group members were surveyed on preferences for germline testing terminology and also deployed a preliminary patient survey to their constituents to gain insight on preferences for germline testing terms. Results: Interviews, framework analysis, and surveys revealed notable differences across cancer communities. We identified at least 33 different terms related to biomarker, genetic and genomic testing being used in patient education and clinical care among the different cancer communities and stakeholders. Terminology was complicated by the variety of testing modalities and gene mutations tested for across cancers. Following multiple discussions, working group members agreed on two umbrella terms to distinguish between somatic and germline testing with additional context for specific cancer communities. “Biomarker testing” was selected as the somatic testing term. “Genetic testing for an inherited mutation” and “genetic testing for inherited cancer risk” were selected as preferred germline testing terms. Conclusions: Our findings highlight the disparate testing terminology landscape and the need for consistent terms to reduce patient confusion, improve communication, facilitate shared decision-making and assure concordance in policy development.

Citizens' Attitudes, Knowledge, and Educational Needs in the Field of Omics Sciences: A Systematic Literature Review

“…Based on this knowledge gap, the planning of education programs for citizens should pay more attention to these issues and provide clear and accurate definitions of the different omics sciences and related tests. Indeed, an important aspect to take into consideration in the information/training process aimed at the general population is also the terminological consistency to be used and disseminated (Martin et al, 2020). Indeed, this is a key aspect for citizen empowerment, since the terminological inappropriateness or variety of scientific definitions could cause great confusion among citizens, especially in a field as complex as that of the omics sciences.…”

Adopting Consensus Terms for Testing in Precision Medicine

“…After documenting more than 33 different terms related to biomarker, genetic, and genomic testing that are currently in use within oncology clinical care and patient education, the working group sought consensus among the stakeholders on several proposed preferred terms that could be applicable across tumor types. 14 These terms were evaluated by working group members, which included patient advocacy organizations with expertise in precision medicine for their disease space, professional societies such as the Association for Molecular Pathology, the Association of Community Cancer Centers, and the National Society of Genetic Counselors, and industry represented by pharma and biotech, laboratories, and test manufacturers. In addition, for the selection of the germline testing term, terms were refined based on feedback received through surveys of more than 1,700 patients and caregivers.…”

Using a Genomics Taxonomy: Facilitating Patient Care Safety and Quality in the Era of Precision Oncology

“…As a result, patients with cancer receive increasing amounts of individualized genomic information about their disease through germline and somatic biomarker testing. The varied and inconsistent use of terms is a definite obstacle to effective patient-clinician communication and, ultimately, to optimal patient care (Martin et al, 2020). Oncology nurses play an essential role in leading the patient and family through the complex matrix of tests, results, and therapy plans.…”