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Perceived Versus Actual Understanding of Combination Therapies and Biomarker-Driven Treatment: A Pan-European Survey of 1,446 Cancer Patients

A pan-European survey of 1,446 cancer patients reveals a significant disconnect between perceived and actual understanding of combination therapies and biomarker-driven treatments, where self-reported information adequacy misclassifies about one in four patients, communication disproportionately favors benefits over harms, and substantial country-specific disparities persist, necessitating a shift from satisfaction-based metrics to objective comprehension checks and standardized communication practices.

Original authors: Frank-Ulrich Fricke, Martina Garau, Conchi Biurrun, Antonella Cardone, Juan Jose Ventura³

Published 2026-09-25

📖 5 min read🧠 Deep dive

CC BY 4.0

Original authors: Frank-Ulrich Fricke, Martina Garau, Conchi Biurrun, Antonella Cardone, Juan Jose Ventura³

Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). ✨ This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer

Modern cancer treatment has moved beyond the idea of a single "magic bullet" to fight disease. Instead, doctors increasingly rely on combination therapies, which means using two or more different drugs at the same time to attack the cancer from multiple angles. This approach is often necessary because cancer cells are adaptable and can learn to resist a single treatment. Alongside these drug combinations, doctors now frequently use biomarker testing. This involves analyzing a patient's tumor to find specific genetic signs that tell the doctor which medicines will work best for that individual person. Together, these tools represent the cutting edge of oncology, offering better chances for survival. However, a crucial question remains: do the patients receiving these complex treatments actually understand what is happening to them?

A recent large-scale survey across Europe sought to answer this by asking 1,446 cancer patients, survivors, and caregivers about their knowledge and experiences. The researchers were not just looking to see if people felt informed; they wanted to know if that feeling matched reality. They examined whether patients understood the concept of combination therapies, whether they knew if their treatment was guided by biomarker tests, and how well they understood the potential benefits versus the risks. The study covered five major countries: France, the United Kingdom, Germany, Italy, and Spain. By comparing what patients said they knew with what they actually reported having been told, the team uncovered a significant gap between perception and reality.

The most striking finding was that many patients believe they are well-informed when they are not. About seventy percent of the respondents felt they had received enough information about their treatment options. Yet, when the researchers looked closer at the same group of people, they found that nearly forty-six percent had never been told by their oncologist that a combination approach was being considered. Even more telling, about twenty-six percent of those who felt fully informed also admitted they had never been told about a combination approach or could not recall such a discussion. This means that for roughly one in four patients, the feeling of being informed is a false sense of security. The survey suggests that simply asking a patient if they are satisfied with the information they received is not a reliable way to measure if they truly understand their care.

The study also revealed a distinct imbalance in how information is communicated. Patients were much more likely to remember the potential benefits of a treatment than the potential harms. When asked to name a benefit of combination therapy, many could do so, but a significantly larger number could not name any negative side effects or risks. In fact, the number of people who could list a benefit but no harm was more than three times higher than those who could list a harm but no benefit. This suggests that the conversation between doctors and patients often highlights the promise of survival and effectiveness while downplaying or omitting the reality of toxicity and side effects. This is a critical issue because agreeing to a more aggressive treatment plan requires a clear understanding of both the rewards and the risks.

Another area of confusion involved biomarker testing. While many patients had undergone these tests, a large portion did not know whether the results had actually been used to decide on their treatment. About forty percent of respondents were unsure if their test results guided their care, and another twenty-seven percent did not even know if they had been tested at all. This indicates that even when advanced testing is performed, the purpose and the outcome of that testing are often not communicated in a way that patients can retain or use. The researchers noted that this is not necessarily because patients are failing to listen, but because the system of communication itself is failing to deliver the message clearly.

The survey also highlighted that these issues are not the same everywhere. The level of understanding and the frequency of discussions about combination therapies varied significantly between the five countries studied. For instance, patients in Italy and Germany were more likely to report having been told about combination approaches compared to those in the United Kingdom, even after accounting for differences in age, education, and the type of hospital they visited. This variation suggests that the problem is not an inherent difficulty in understanding complex medicine, but rather a difference in how different healthcare systems and advocacy groups communicate with patients. In some places, patient advocacy groups serve as a major source of information, while in others, they play a much smaller role.

Based on these findings, the authors propose that the way cancer care is communicated needs to change. They argue that doctors should stop assuming that a patient's feeling of being informed is the same as actually being informed. Instead, they suggest using simple methods to check understanding, such as asking patients to repeat the treatment plan in their own words. They also recommend using tools that explicitly lay out the risks of toxicity alongside the benefits, ensuring that patients can make truly informed choices. Finally, they call for a standardized way of explaining biomarker results so that every patient knows why a test was done and how it affects their treatment. The goal is to move from a system where patients feel satisfied but remain confused, to one where they are genuinely empowered with the knowledge they need to navigate their care.

Technical Summary: Perceived Versus Actual Understanding of Combination Therapies and Biomarker-Driven Treatment

Problem Statement
While combination therapies (CTs) and biomarker-driven precision medicine are becoming central to modern oncology, there is a critical uncertainty regarding the alignment between patients' perceived understanding of their treatment and their actual knowledge. Existing literature documents that patients are often under-informed, but it remains unclear where communication specifically fails, whether patients recognize these gaps, and if these deficits are inherent to patient complexity or modifiable features of health system communication. Specifically, the study addresses whether patient-reported "information adequacy" (a common proxy for communication quality) accurately reflects actual comprehension of CTs and biomarker testing, and whether there is a systematic bias in how benefits versus harms are communicated.

Methodology
The study employed a cross-sectional, pan-European survey design adhering to STROBE and CHERRIES reporting guidelines.

Instrument: A 29-item anonymous questionnaire developed by an advisory board of researchers and patient advocates. It utilized multiple-choice and closed-ended items covering demographics, treatment history, sources of information, awareness of CTs and biomarkers, perceived benefits/risks, and willingness to self-fund.
Dissemination: The survey was hosted on SurveyMonkey, translated into five languages (English, French, German, Italian, Spanish), and distributed via Cancer Patients Europe (CPE) networks and social media for 90 days.
Participants: 1,446 responses were collected from adult European cancer patients, survivors, and carers. The sample was self-selected and non-representative, with a predominance of women (85.8%), older adults (61.9% >60 years), and residents of smaller towns or rural areas.
Statistical Analysis:
- Analyses were conducted at the individual respondent level.
- Proportions included Wilson 95% confidence intervals (CIs).
- Perceived vs. Actual Understanding: Direct cross-tabulation was used to link responses within the same respondents, avoiding inference from marginal proportions.
- Benefit vs. Harm Literacy: McNemar's test with continuity correction was applied to paired observations to identify within-patient asymmetries.
- Country Differences: Pearson $\chi^2$ tests with Holm–Bonferroni adjustment and Cramér's V effect sizes were used. Multivariable logistic regression adjusted for age, education, respondent type, facility type, and lines of therapy to isolate country-specific effects.

Key Results

Dissociation of Perception and Reality: Among 1,103 respondents reporting on information received, 70.4% felt adequately informed. However, when linked to specific knowledge items, 25.8% of those who felt informed reported never having been told about a combination approach, and 25.9% did not know if biomarker testing guided their care. This indicates that satisfaction-based metrics misclassify approximately one in four patients.
Awareness Gaps:
- Combination Therapy: 46.8% had never heard the term "combination therapy." Of those who had, 45.9% reported their oncologist never discussed a combination approach.
- Biomarker Testing: 33.7% reported no prior biomarker testing, while 27.1% were unsure. Crucially, only 41.3% were aware that test results informed their treatment decisions; 39.8% did not know.
Benefit-Harm Asymmetry: There is a significant within-patient bias toward understanding benefits over harms. 30.6% of respondents could name no potential harms of combinations, compared to 16.3% who could name no benefits. Discordant pairs showed a 3.5:1 ratio (195 patients named benefits but no harms vs. 55 who named harms but no benefits; $P < .001$ ).
Country Variations: Significant differences persisted across the five major contributing countries (France, UK, Germany, Italy, Spain) even after adjusting for demographics. For instance, Italian respondents were twice as likely (Adjusted OR 2.09) and German respondents 1.6 times as likely to have been told about a combination approach compared to UK respondents.
Information Sources: Medical professionals (72.3%) were the dominant source of information. Patient associations were cited by only 11.1% overall, though usage varied significantly by country (28.1% in Spain vs. <10% elsewhere).

Key Contributions and Claims
The paper claims four specific contributions that move beyond documenting low awareness to identifying structural communication failures:

Misclassification by Satisfaction Metrics: Patient-reported information adequacy is a flawed proxy for communication quality, concealing substantial gaps in actual knowledge. The authors argue this metric should be replaced by objective comprehension checks (e.g., teach-back).
Directional Communication Bias: The deficit is not merely a lack of information but a directional skew where benefits are communicated more effectively than harms. This suggests consent for toxic regimens may be based on incomplete risk profiles.
Uncertainty vs. Misinformation: High rates of "do not know" responses regarding biomarker testing indicate a failure to convey the purpose of testing, leaving patients unable to account for decisions made on their behalf, rather than holding incorrect beliefs.
System-Level Modifiability: The persistence of country-level differences after demographic adjustment suggests the problem lies in modifiable features of health system and advocacy communication, not in patient characteristics or disease complexity.

Significance and Proposed Interventions
The study concludes that the identified gaps are amenable to low-cost, specific interventions rather than requiring broad patient education campaigns. The authors propose four actionable levers:

Replace Satisfaction with Comprehension: Implement objective checks like the teach-back method to verify understanding of combination regimens and biomarker results.
Toxicity-Explicit Decision Aids: Deploy structured tools that force the explicit presentation of toxicity risks to balance the current over-emphasis on efficacy.
Standardize Biomarker Communication: Use plain-language explanations embedded in care pathways to clarify what was tested and how results guide treatment.
Scale Navigation and Advocacy: Leverage patient navigation and advocacy organizations (which show high efficacy in some countries like Spain) to deliver education equitably, particularly for rural and underserved populations.

The paper maintains a modest stance, noting that as a convenience sample, the findings are hypothesis-generating and the reported gaps may be conservative estimates. It emphasizes that the goal is to shift the focus from a "patient education deficit" to a "system-level communication design choice."

Technical Summary: Perceived Versus Actual Understanding of Combination Therapies and Biomarker-Driven Treatment

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