A method for collecting detailed data on direct and indirect medical expenses of cancer patients.

A complex data collection system involving seven community based practices and a university affiliated hospital has been developed. Four types of data are being collected: 1) medical status, 2) billings for a six month period, 3) patient reports of direct and indirect costs for a six month period and how they affected family finances and 4) diaries of direct and indirect costs for a week in which treatment was received and a week in which treatment was not received. Three groups are involved in collecting these data: physicians, their office staff and a central project telephone interviewer. Office staff are paid overtime rates for their work which is in addition to their regular responsibilities. Telephone follow-up interviews have contributed to compliance and have helped insure consistency in the data. Two hundred and fifteen patients have provided complete information to date. Refusal rate has been approximately 26% and drop out rate among persons enrolled in the study has been 21%. Patients most difficult to recruit and hold in the study have been very sick, elderly or on welfare. Total direct costs of data collection are estimated to be $48.00 per patient.