A Comparison of Patients’ and Physicians’ Knowledge and Expectations Regarding Precision Oncology Tests

Abstract

(1) Background: As genomic testing is becoming a part of the mainstream oncology practice, it is vital to ensure that our patients fully understand the implications of these tests. This study aimed to compare the attitudes and expectations of cancer patients with those of their physicians regarding the role of biomarker testing in clinical decision making. (2) Methods: Two separate, complimentary, self-administered questionnaires for patients with cancer and their physicians, respectively, were collected in Calgary, Alberta, Canada. Out of 117, 113 completed patient surveys were included in the statistical analysis, constituting a 96.4% response rate. These surveys were subsequently matched with those of their corresponding oncologists to determine the concordance rates. (3) Results: Overall, patients demonstrated a good understanding of general cancer biology (80.0%) and diagnostic processes (90.0%) associated with precision oncology. Most patients wanted their tumours to be tested to guide treatment, and the oncologists broadly shared these views (concordance 65.1%). However, there were discrepancies between the knowledge and expectations regarding the applications of test results on actual diagnosis and prognosis between patients and their oncologists (concordance 26.1% and 36.0%, respectively). While only 28.0% of patients thought they had enough knowledge to make informed decisions, the majority (68.0%) said they needed more information. (4) Conclusion: Our study shows that patients and cancer physicians do not always agree with the roles and applications of genomic tests, which could lead to misplaced expectations and poor health outcomes. More research is needed to devise strategies to improve education and communication to align these expectations and improve the quality of clinical decision making.

Understanding communication between patients and healthcare professionals regarding comprehensive biomarker testing in precision oncology: A scoping review

“…Also, where specified, much of the available data were based on well-educated patients of European descent (or "non-Hispanic White"). 17,18,21,22,[26][27][28][29][30][31][32][33] Additionally, evaluation of populations in two review articles showed an underrepresentation of other ethnic and minority groups, which was also supported by author statements in these publications. 30,33,[35][36][37][38][39] Patients were interested in receiving information on different types of cBT results, especially those impacting their own and their children and relatives' health.…”

“…Sixteen additional studies focused on general or post‐testing cBT‐related communication in either the clinical care or research context, whereby the distinction between the two was not always clear 12,17–22,26,28,31–33,36,37,47,48 …”

“…11,38,41 3.2.3 | Post-testing and general communication-Additional considerations Sixteen additional studies focused on general or posttesting cBT-related communication in either the clinical care or research context, whereby the distinction between the two was not always clear. 12,[17][18][19][20][21][22]26,28,[31][32][33]36,37,47,48 Patients expressed the need for psychosocial support when receiving cBT results 37 and especially secondary findings as these results may expose personal vulnerabilities, imply discouraging health prospects, and negatively affect their family members. 17,26 Also, four studies pointed out that patients' motivation to undergo cBT and high expectations for an individualized or curative treatment may be misplaced due to their limited understanding or an exaggerated promise of cBT as presented in the media.…”

“…30,33,[35][36][37][38][39] Patients were interested in receiving information on different types of cBT results, especially those impacting their own and their children and relatives' health. [17][18][19]28,30,32,33,36,38,40 However, four studies implied that interest in receiving information on variants of uncertain significance (VUSs) was variable or even absent, depending on the context and understanding of VUS implications. 18,19,28,36 Several overarching challenges surrounding cBTrelated communication were identified: the patients' general distress due to cancer diagnosis, 12,19,21,37,38,40,41 limited health literacy and lack of patients' understanding of genomic concepts, 12,17,19,20,37,38,42,43 uncertain significance of some cBT results, 38,40,44 a mismatch between high patient expectations and perceived benefit of cBT versus actual testing outcomes 12,20,33 and a potential lack of actionable alterations and/or therapeutic options based on a patient's genomic profile.…”

“…The Netherlands 4 (9.5) 17,26,40,51 France 3 (7.1) 11, 41,44 Other (Belgium, Germany) 3 (7.1) 7,12,39 EMR Saudi Arabia 1 (2.4) 62 Study design Qualitative 10 (23.8) 12,17,[19][20][21]26,[36][37][38]53 Quantitative 7 (16.7) 18,27,28,43,50,51,80 Combined-qualitative and quantitative a 8 (19.0) [29][30][31][32][33][47][48][49] Other b 17 (40.5) 7,11,22,34,35,[39][40][41][42][44][45][46]52,54,55,61,…”