Cancer patient perceptions of symptom care collected using a registry-based system suitable for PRO surveillance

Symptom management is critical to quality cancer care affecting treatment completion, functioning and quality of life.  Yet symptoms are often under reported and under treated. Systematic, representative patient reported symptom data could play an important role in quality control and surveillance research. We describe patients’ perceptions of symptom care and an innovative, population-based method to collect them in community cancer centers (CCCs).

The Patient Reported Outcomes Symptoms & Side Effects Study sampled patients 4-12 months from diagnosis with locoregional breast/colon cancer from 17 CCCs. Software automating case identification, sampling and reporting was developed and beta-tested. The questionnaire was adapted from validated NCI instruments and mailed using the Dillman method with online option.

2,517 patients responded (RR=60%). 71% of all patients reported a health provider gave advice on coping with pain related to their cancer, 61% for fatigue, 55% for emotional distress (ED). 62% reported being bothered by pain, 72% by fatigue, 47% by ED. Logistic regressions revealed colon cancer patients and those with less education were less likely to report getting advice on coping with symptoms (p<0.01).  All outcomes varied significantly across hospital sites after adjusting for cancer type and education (p<0.01). 

1/3 to 1/2 of patients did not recall getting advice for three common symptoms. CCC-level variations in outcomes suggest symptom care may vary geographically. CCC-specific reports may promote efforts to improve care through professional/patient education and applying standards of care.  The system for collecting PROs has potential for wider dissemination and use with other PROs.