Postradiotherapy morbidity in long-term survivors after locally advanced cervical cancer: how well do physicians' assessments agree with those of their patients?

PURPOSE: Descriptions of late morbidity after radiotherapy in cervical cancer survivors (CCSs) are usually based on observations made by physicians, and rarely by patients themselves. We describe and compare physician-assessed morbidity with patient-rated symptoms more than 5 years after pelvic radiotherapy. METHODS AND MATERIALS: In 147 CCSs treated between 1994 and 1999 at The Norwegian Radiumhospital, morbidity data were regularly documented by physicians at least for 5 years after radiotherapy. Information on patient-rated symptoms was collected by a questionnaire from 91 (62%) of the 147 survivors after a median follow-up time of 96 months (65-131 months). The results were compared with physician-assessed morbidity scores recorded at 5 years, and to selected normative data using descriptive statistics. Physician-assessed morbidity data were modeled using Kaplan-Meier method. Agreement between physician data and patient data was expressed using weighted kappa statistics.
RESULTS: The 5-year Kaplan-Meier estimates of physician-assessed intestinal, bladder, and vaginal morbidity Grade 3-4 were 15%, 13%, and 23%, respectively. The prevalence of patient-rated severe symptoms from these organs was much higher (intestines 45%, bladder 23%, and 58% vaginal discomfort among sexually active CCSs). Poor agreement was confirmed by low values of kappa: For bladder the concordance was slight (kappa = 0.16) and for intestine it was fair (kappa = 0.27). Stress incontinence, diarrhea, nausea, and sexual problems were significantly (p < 0.001) more prevalent when compared with a control sample from the general female population.
CONCLUSIONS: Morbidity is common after pelvic radiotherapy. However, our data indicate that physicians underreport patients symptoms. It is important to incorporate patient-reported outcomes in the evaluation of treatment-related morbidity.