Evaluation of oncology registry follow-up methods.

ABSTRACT

BACKGROUND: The accuracy and completeness of oncology (tumor) registry patient follow-up information directly affects the validity of the oncology registry system for determining outcomes, as a quality assurance measure, and for research activities. At this institution, if a hospital-based patient encounter has not been identified during the previous year, a follow-up letter is sent to the attending physician to obtain current information about the patient. Difficulties using this method 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. METHODS: A study was conducted to compare the accuracy and completeness of the oncology registry patient follow-up information obtained from three sources responses from the patient, responses from the physician, and affiliated clinic chart reviews. Seven hundred ninety-one patient and physician letters were sent during a 2-month period, and 122 clinic charts were reviewed. RESULTS: Physicians responded more frequently than patients (82% vs. 58%) (P < 0.003). From the responses received, requested information regarding recurrence, treatment, quality of survival, and survival was obtained most frequently from patients. However, it was difficult to ascertain information about cancer status from patient responses. Patients supplied more current follow-up information than physicians or the clinic chart reviews. CONCLUSIONS: A follow-up system that delivers accurate and complete information while maintaining efficiency is a critical aspect of an oncology registry. Requesting follow-up information from the patient before physician contact or chart review allows for more current information while maintaining accuracy regarding cancer recurrence, treatment, quality of survival, and survival. Consequently, staff time required for obtaining follow-up information from physicians and/or chart reviews is lessened and costs decreased.