Patient-friendly next generation sequencing (NGS) reports, comprising patient-facing summaries that accompany provider-directed reports, are needed to improve patient understanding of biomarker test results and enhance communication with healthcare providers (HCPs) for shared decision making, a study suggests.1 The study was presented in a poster at JADPRO Live 2022, the annual APSHO meeting.

Biomarker testing has become a critical aspect of diagnosing lung cancer and informing treatment selection, Nikki Martin and colleagues at the LUNGevity Foundation in Bethesda, Maryland, wrote in their poster. The authors noted, however, that NGS biomarker test reports use jargon that can be challenging for patients and clinicians to understand.

A prior study revealed variations in structure, format, language, and content across NGS reports.2 With the current study, Martin and colleagues sought to gain insight on patient and HCP experiences with biomarker testing, NGS reports, and discussion of biomarker test findings.1


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The researchers hosted 2 focus groups of patients with lung cancer who had undergone biomarker testing. Patients in 1 group were sourced from the LUNGevity network, and patients in the other group had no connection to LUNGevity.

The researchers also hosted 2 focus groups with multidisciplinary HCPs who had experience ordering, receiving, and reading NGS reports.

The focus groups revealed inconsistencies with regard to how, when, and by whom discussions on biomarker results are initiated and conducted. There were also inconsistencies in how reports are delivered to the patient — electronically from the hospital or laboratory or in person by the patient’s HCP.

The patient focus groups revealed patients’ desire to know that all appropriate testing has been done. The patients also expressed preferences for reports to clearly identify the actionable biomarker, list approved treatment options, provide information on whether clinical trials are available, explain acquired resistance, and explain what it means if no biomarkers are detected. In addition, patients said they prefer that reports focus on details that pertain to them specifically.

The HCPs expressed a preference for better patient preparation in advance of providing results. The HCPs also want reports to identify the most important markers and treatments, direct patients to appropriate resources, offer explanations that are relevant to the patient, explain resistance but avoid statistics and generalizations, and provide information on clinical trials.

Disclosures: The study authors did not disclose any conflicts of interest.

References

  1. Martin N, James A, Griffith K. Complex biomarker reports suggest need for patient-friendly reporting and education. Poster presented at: JADPRO Live 2022; October 20-23, 2022; Aurora, CO. Abstract JL1005P.
  2. Martin N, Dropkin L, Molina M, Redway L. Inconsistencies within biomarker test reports provide opportunities for future patient education. WCLC 2021; September 8-14, 2021. Abstract P43.02.