A Vital Step Toward Informed, Compassionate Care

This chart presents a longitudinal picture of symptom burden in patients diagnosed with lung cancer, aggregating seven key symptom dimensions — such as pain, fatigue, and breathlessness — tracked over time since diagnosis. Using a 4-month moving average and a 95% confidence interval, it shows not just the average intensity and frequency of symptoms, but also how these experiences evolve in the months and years after diagnosis.

Few studies have captured symptom experience in such a dynamic way. Notable exceptions include the PROFILES registry in the Netherlands and the SYMPTOM and eRAPID studies in the UK, which also recognize the value of longitudinal patient-reported outcomes. These kinds of data offer critical insights into what patients actually go through, beyond the clinical snapshots of appointments or interventions.

Why does this matter? Because symptom trajectories like these can transform how we prepare and support patients. They help set realistic expectations, enable joint decision-making, and identify when more supportive care may be needed. As the NHS begins to grapple with new policy frameworks around assisted dying, such evidence will be vital. Informed consent and truly person-centred decisions demand an understanding not only of prognosis, but of lived experience — and of how symptoms affect quality of life over time.

By making these symptom and quality of life journeys visible, we are better equipped to have the right conversations at the right time, with compassion, clarity, and respect for each individual’s experience.