EVALUATION OF ONCOLOGY REGISTRY FOLLOW-UP METHODS

Background. The accuracy and completeness of oncology (tumor) registry patient follow-up information directly affects the validity of the on cology registry system for determining outcomes, as a quality assuranc e measure, and for research activities. At this institution, if a hosp ital-based patient encounter has not been identified during the previo us year, a follow-up letter is sent to the attending physician to obta in current information about the patient. Difficulties using this meth od include (1) correct identification of the appropriate physician (2) constraints on physician and staff time to provide information, and ( 3) accuracy, currentness, and completeness of information provided. Me thods. A study was conducted to compare the accuracy and completeness of the oncology registry patient follow-up information obtained from t hree sources: responses from the patient, responses from the physician , and affiliated clinic chart reviews. Seven hundred ninety-one patien t and physician letters were sent during a 2 month period, and 122 cli nic charts were reviewed. Results. Physicians responded more frequentl y than patients (82% vs, 58%) (P < 0.003). From the responses received , requested information regarding recurrence, treatment, quality of su rvival, and survival was obtained most frequently from patients. Howev er, it was difficult to ascertain information about cancer status from patient responses. Patients supplied more current follow-up informati on than physicians or the clinic chart reviews. Conclusions. A follow- up system that delivers accurate and complete information while mainta ining efficiency is a critical aspect of an oncology registry. Request ing follow-up information from the patient before physician contact or chart review allows for more current information while maintaining ac curacy regarding cancer recurrence, treatment, quality of survival, an d survival. Consequently, staff time required for obtaining follow-up information from physicians and/or chart reviews is lessened and costs decreased.