The Language of the Body: Why Patient-Reported Symptoms Predict Survival

A few months ago, I met a man in his late sixties with advanced gastrointestinal cancer that had spread to his liver and lymph nodes. His wife had recently died. He lived alone in a three-story house. He knew his disease was incurable, but he was motivated; he wanted “more time.”

At each visit, he told his oncologist he felt okay. His pain was controlled. He had some fatigue and a poor appetite, but nothing alarming. He continued treatment. His scans were stable.

Last week, he presented for his scheduled infusion, looking much worse. His pain had surged. He was nauseous constantly and struggling to move around. He was admitted. I met him for the first time. This time, scans showed rapid progression, new ascites, and worsening liver metastases.

When we sat down and reconstructed the preceding several weeks, a pattern emerged.

His pain medications had been escalated gradually, week by week. He had stopped climbing to the third floor of his house because it was too exhausting for him. He was spending most of his day on the sofa. When he weighed himself each week, he noticed a loss of one to two pounds. He was less interested in food. He felt exhausted most of the time.

None of these changes, in isolation, sounded alarming. Together, they told a story that we missed because we were not tracking the trajectory.

The Question

Could routine symptom tracking, with weekly scores for pain, fatigue, appetite, and activity, have revealed this gradual decline before it became a crisis? Could the constellation of symptoms showing escalating pain scores and declining function have prompted an earlier conversation about what mattered most to him?

The Origins

Patient-Reported Outcome Measures (PROMs) are tools that capture data directly from patients. They measure symptom burden, physical functioning, psychological states, and quality of life. In other words, we use PROMs to capture Patient-Reported Outcomes (PROs).

The concept is not new. Standardized patient questionnaires have been in use since the 1960s. In 1991, @EduardoBruera and colleagues developed the Edmonton Symptom Assessment Scale (ESAS) to document symptom burden in patients with advanced cancer on a palliative care unit. ESAS has since been translated into over twenty languages and validated widely.

For years, however, patient-reported symptoms were often treated as secondary or “soft” data, alongside scans and labs. We asked about it during visits, but we rarely tracked the trajectory. A patient says their pain is “a little worse,” but worse than what? Without longitudinal data, a subtle decline stays invisible.

The Numbers

That dismissal is no longer defensible.

A 2024 meta-analysis of 45 randomized trials found that integrating a PROM into cancer care was associated with improved overall survival (hazard ratio 0.84). In plain language, at any given point during follow-up, patients in the PRO arm were about 16 percent less likely to die. Quality of life at twelve weeks also improved. Effects on emergency department visits and hospitalizations were mixed in pooled analyses.

A 2025 meta-analysis of 69 trials, involving more than 44,000 patients, demonstrated that patient-reported outcomes provide independent prognostic information for overall survival. Higher global health status, better physical functioning, and preserved role functioning were associated with longer life. Greater symptom burden, including nausea, vomiting, fatigue, pain, appetite loss, and dyspnea, predicted worse survival.

These findings are not marginal. They suggest that patient-reported symptoms predict survival as powerfully as disease stage or performance status.

The Mechanisms

Why would asking a patient how they feel affect their lifespan?

PROs capture what is often missed between visits. Fatigue, pain, weight loss, and appetite decline reflect physiology that accumulates before crisis: inflammation, cachexia, organ stress, and treatment toxicity. The signal is there, distributed across weeks, but we are trained to look for acute change, not creeping deterioration. Clinicians systematically underestimate symptom severity. Symptoms frequently go undetected between clinic visits. Patients, in contrast, experience their bodies continuously. They know when something is changing. PROMs give patients a language to articulate what their bodies are telling them, and they give clinicians a signal to act.

Why It Matters Now

The technological landscape has shifted.

Electronic PROMs – ePROs – can be collected via smartphone apps, text messaging, internet portals, or touch-screen kiosks. They can be integrated into electronic health records, making real-time patient-reported data available at the point of care.

Artificial intelligence can now process longitudinal symptom data, identify patterns, trigger alerts, and even inform clinical decision support tools. Large language models hold the potential to create a new generation of PROMs, personalized, open-ended, conversational assessments that adapt to individual patients and interpret natural language responses.

This is no longer about research endpoints. This is about routine care.

Routine PRO collection has been associated with reduced emergency department visits and hospitalizations. PROMs can trigger palliative care referrals, prompt goals-of-care conversations, and support shared decision-making. They empower patients by validating their experience and centering their voice in clinical decisions.

What We Can Do

For systems and teams:

  • Integrate PROMs into electronic health records systematically, ensuring data are visible and actionable.
  • Develop workflows that analyze symptom trends over time and trigger clinical responses: referrals, medication adjustments, advance care planning.
  • Invest in training and infrastructure to contextualize patient-reported data within the broader clinical picture.

For patients and families:

  • Talk about your symptoms honestly and in detail – you are the expert on your own body.
  • Describe what you can and cannot do: eating, sleeping, walking, working, caring for others.
  • These details are not peripheral; they are essential data that can guide your care.

What Remains

I think about that man in his late sixties, alone in his house, his symptoms escalating week by week: the extra pill for pain, the abandoned third floor, the slow disappearance of his appetite. We reviewed scans and labs, but missed the pattern unfolding in his daily life.

I wonder what might have been different if we had tracked his symptoms weekly, if rising pain scores and declining activity had prompted a phone call, an earlier visit, or a conversation about what mattered most.

PROs are not magic. They will not cure cancer. They offer something else: a systematic way to honor the patient’s experience, to make visible what has long been invisible, and to act before crisis becomes inevitable.

The evidence is strong. The tools are on our desks. What we need now are thresholds, roles, and the discipline to act on what patients tell us every week.

What patterns have you seen in your practice, or in your own care, where earlier attention to symptoms might have changed the course of treatment?