The aim of this study was to explore the symptom experience of patients with cancer, identify changes in symptoms over time, and explore the congruence of symptom reports between patients and their informal caregivers.

This was a prospective longitudinal evaluation of symptoms over 1 year from start of treatments (T1) using the Memorial Symptom Assessment Scale. Assessments and follow up took place at 3 months (T2), 6 months (T3) and 12 months (T4). A heterogeneous sample of 100 patients with cancer participated, providing 325 assessments over time. Furthermore, 82 caregivers also participated, providing 238 dyadic patient–caregiver assessments over the same time.

The most commonly occurring, and by far most distressing, symptom was “lack of energy.” Common symptoms reported were lack of concentration, difficulties sleeping, shortness of breath, cough, pain, dry mouth, and feeling drowsy. Symptom occurrence and distress improved over time, particularly from T2 to T3 (p < 0.05), but the “chronicity” of some generic symptoms was notable. Caregivers tended to overestimate occurrence and distress compared to patients, particularly in symptoms of psychological nature; κ statistics had a highest coefficient of 0.45, suggesting moderate agreement between patients and caregivers at best.

More attention needs to be paid to the commonly reported symptoms by patients, as they have the potential of impacting on quality of life (QOL). As patient–caregiver reports had moderate agreement, effort should be directed to improving this agreement, as caregivers are often communicating patient symptoms to clinicians.