Shared Decision Making in First-Line Therapy: Navigating the Trade-Off Between Survival Gains and Adverse Events

Key Takeaways:

• Even when 64 percent of patients feel their cancer is clinically "well-controlled," high rates of chronic fatigue and "brain fog" impact daily functioning.
• Approximately 19 percent of patients report that lung cancer still has a significant negative impact on their overall quality of life.
• Shared decision-making must evolve to prioritize the preservation of functional independence alongside survival gains.

The therapeutic landscape for advanced non-small cell lung cancer (NSCLC) has shifted for many patients from a standardized chemotherapy approach to a nuanced era of precision medicine and immunotherapy. While these advancements have extended overall survival (OS), they have also introduced complex toxicities and a dilemma for clinicians: How much treatment-related burden should a patient endure for a potentially marginal gain in survival?

The patient insights and clinical data presented in this article are derived from Health Union’s Lung Cancer In America 2025 survey, which captures the real-world experiences, treatment priorities, and symptom burdens of hundreds of patients living with advanced-stage lung cancer.

This data captures that shared decision-making is no longer merely an ethical ideal; it is a clinical necessity for ensuring that first-line therapy aligns with the individual patient’s values and quality-of-life (QoL) priorities.

The survival-toxicity spectrum

In the first-line setting, the pressure to achieve maximal survival often drives treatment selection toward aggressive combinations. However, clinical trial data, while robust in demonstrating efficacy, often fail to capture the day-to-day impact of low-grade, chronic toxicities on a patient's functional status.

For the patient, the "trade-off" is not a statistical p-value but a daily negotiation with their physical and mental health. Health Union’s Lung Cancer In America 2025 survey reveals that while 64 percent of patients agree their lung cancer is “well-controlled,” the cost of that control is high. Approximately 19 percent of patients report that lung cancer still has a significant negative impact on their overall quality of life.¹

Among those with common EGFR mutations, 59 percent feel their condition is well-controlled on current therapy, suggesting that even with targeted options, there is still room for improvement and that survival is not the only metric of success.¹

Broadening the definition of adverse events

To provide truly patient-centered care, clinicians must look beyond the performance status. The 2025 data show a heavy symptom burden that persists regardless of clinical stability.¹

While 56 percent of the general lung cancer population reports fatigue, this number jumps to 80 percent for those with EGFR mutations. Other prevalent adverse events that impact daily living include:¹

• Cognitive and physical burden – Brain fog or memory problems affect 35 percent of all patients and 54 percent of those with EGFR mutations. Pain or discomfort was reported by 28 percent of patients in the past month.
• Dermatological issues – Changes to fingernails (thinning or brittleness) are a significant concern, affecting 26 percent of the general population and a staggering 63 percent of those on targeted EGFR therapies.
• Neurological and sleep issues – Neuropathy impacts 26 percent of patients, while 24 percent struggle with insomnia or sleep problems.
• Oral health – Dry mouth is reported by 29 percent of patients.

Integrating shared decision-making into practice

To successfully navigate these trade-offs, clinicians should move from discussing "what treatment" to discussing "what life" the patient values. Communication should explicitly elicit patient preferences regarding specific side effects that might interfere with their cherished activities.

For instance, a clinician might view grade 1 fatigue as manageable, a patient who prioritizes walking or gardening – activities enjoyed by 41 percent and 39 percent of patients, respectively – may find that same fatigue devastating.¹

Furthermore, shared decision-making must address the psychosocial and financial burdens. According to the In America data, approximately 20 percent of patients report that lung cancer has a significant impact on their mental and emotional health.¹

Clinicians must also address the “non-clinical” burdens. Approximately 13 percent of patients report a significant negative impact on household finances, and 20 percent worry a lot about being able to pay for medication. Currently, only 23 percent of patients believe the people in their lives truly understand what it is like to live with lung cancer.¹

Integrating discussions about affordability and support systems is essential, as financial stress can exacerbate the psychological burden of the disease. By opening the dialogue to include these "non-clinical" factors, providers can foster a treatment environment where the patient feels supported rather than just "treated."

Recalibration is needed

Navigating first-line therapy in advanced lung cancer requires recalibrating the clinician-patient relationship. By weighing survival gains against the threshold for adverse events – from brain fog to fatigue to nail changes – clinicians can honor the patient’s definition of a life well-lived.

Shared decision-making ensures clinical excellence does not come at the expense of the human experience.