PURPOSE: Qualitative interviews were conducted and a survey instrument was developed to inform the implementation of a general population screening program for T1D in children and to quantify screening-test attributes relevant to parents and physicians in the United States.
METHODS: Semistructured qualitative interviews were conducted with parents and physicians to understand views on general population screening for T1D and identify important attributes of screening programs. Using the results, a discrete-choice experiment (DCE) survey instrument was developed to quantify preferences over multiple options. The survey was pretested using interviews to confirm attribute relevance and respondent comprehension.
RESULTS: In the qualitative interviews (10 parents, 10 physicians), test accuracy and the availability of treatments to delay onset or lessen T1D-associated health risks ranked as important. Parents’ concerns included the need for venipuncture and the cost of the test. Physicians’ concerns included the emotional impact of positive results on families and test reimbursement. A DCE survey was developed with 5 attributes covering when, where, and how the sample for screening is obtained; cost; monitoring and education to reduce the risk of DKA; and availability of an optional treatment to delay T1D. In the pretest interviews (15 parents, 15 pediatricians), the relevance of the attributes was confirmed. The pretest sample placed the most value on reducing the risk of DKA and the availability of a treatment to delay T1D onset. Low cost and convenience were considered key to widespread adoption by pediatricians.
CONCLUSIONS: Two sets of interviews confirmed an interest in general population T1D screening, but follow-up treatment for a positive result was the key driver for acceptance. The survey will be administered to 1,000 parents and 500 pediatricians to quantify the importance of screening attributes with the goal of informing the implementation of a general population T1D screening program.
