Patient Understanding of Tumor Genomic Testing: A Quality Improvement Effort

Abstract

PURPOSE: Tumor genomic testing (TGT) has become increasingly adopted as part of standard cancer care for many cancers. Despite national guidelines around patient education before TGT, available evidence suggests that most patients' understanding of genomics remains limited, particularly lower-income and minority patients, and most patients are not informed regarding potential incidental germline findings. METHODS: To investigate and address limitations in patient understanding of TGT results, a Plan-Do-Study-Act (PDSA) approach is being used to assess needs, identify opportunities for improvement, and implement approaches to optimize patient education. We reviewed published guidelines related to pre-TGT provider-patient education and to identify key points (Plan). A provider quality improvement survey was completed (Do), which highlighted inconsistency in pre-TGT discussion practice across providers and minimal discussion with patients regarding the possibility of incidental germline findings. RESULTS: Patient focus groups and interviews (N = 12 patients) were completed with coding of each transcript (Study), which revealed themes including trouble differentiating TGT from other forms of testing, yet understanding that results could tailor therapy. The integration of data across this initial PDSA cycle identified consistent themes and opportunities, which were incorporated into a patient-directed, concise animated video for pre-TGT education (Act), which will form the foundation of a subsequent PDSA cycle. The video addresses how TGT may/may not inform treatment, the process for TGT using existing tissue or liquid biopsy, insurance coverage, and the potential need for germline genetics follow-up because of incidental findings. CONCLUSION: This PDSA cycle reveals key gaps and opportunities for improvement in patient education before TGT.

A Video Intervention to Improve Patient Understanding of Tumor Genomic Testing in Patients with Cancer

“…23 Further, there is significant variability in how frequently providers educate patients prior to TGT and the content of that education. 19,24-27 Despite consensus across international oncology and medical genetics societies around patient education prior to TGT, 3-9 few strategies have emerged that address key guidelines while also being feasible within the flow of busy oncology clinical settings. To address this critical gap, we demonstrate that our concise, 3-4 minute animated video, now publicly released for widespread use, effectively conveys key information in an efficient timeframe to provide patient education prior to TGT.…”

“…28-30 The differences between more comprehensive pre-TGT education (e.g. the Multimodality COMET eHealth Education Intervention) 31 and concise approaches such as this video 19 reflect a challenging balance between ensuring adequate content but also facilitating delivery within clinic flow. Shared-decision making encompasses the need for patients to discuss their concerns with family members and supporters 28,32 and this video can be directly shared with family and friends with no need for the patient to synthesize information before sharing it with support persons.…”

“…To address this need, we previously conducted a quality improvement (QI) initiative focused on patient education prior to TGT using a Plan-Do-Study-Act (PDSA) approach. 18,19 Within that PDSA cycle, published guidelines related to pre-TGT provider-patient education were reviewed; a provider QI survey highlighted inconsistency in pre-TGT discussion practice across providers; and patient focus groups and interviews revealed important themes and opportunities. Themes and opportunities were incorporated into a patient-navigated, concise 3-4 minute animated video for pre-TGT education with content addressing 14/17 (82%) of key points described in the ASCO and ACMG guidelines.…”

“…Themes and opportunities were incorporated into a patient-navigated, concise 3-4 minute animated video for pre-TGT education with content addressing 14/17 (82%) of key points described in the ASCO and ACMG guidelines. 3,6,19 The video is based on adult learning and communication theory and includes characters of varied races, ethnicities, and genders so that the images presented are relatable to patients of varied identities.…”