How well does the questionnaire for identifying children with chronic conditions identify individual children who have chronic conditions?

Background: The Questionnaire for Identifying Children With Chronic Conditions (QuICCC) is an instrument based on a conceptual noncategorical definition that uses parental responses to identify children with chronic conditions for epidemiological purposes. Objectives: To determine whether the QuICCC is sufficiently valid, sensitive, and specific to be used to identify individual children as having a chronic condition or disability; whether parents are accurate enough that their answers to QuICCC items can be accepted as valid; and what kinds of errors in classification occur when the QuICCC is used to identify children with chronic conditions. Methods: The sample consisted of 424 children who were patients of 9 physicians in separate practice settings throughout New England. Each physician was briefly trained in the conceptual definition on which the QuICCC is based and then was asked to identify 25 children in his or her practice who met the definition and 25 children who did not meet the definition. The QuICCC was administered to the parents of these children by blinded interviewers via telephone. The QuICCC classification was compared with physician categorization. Discrepant cases were then followed up by asking physicians and parents to answer the original questions a second time. Results: Complete data were available on 379 (89.4%) of 424 children. There was agreement on 89% (κ = 0.78). The sensitivity was 94%; specificity, 83%; positive predictive value, 86%; and negative predictive value, 92%. Of the 42 discordant cases, 30 parent reports on the QuICCC qualified the child as having a chronic condition when the physician classified the child as being without such a condition. Fewer (n = 12) discrepancies occurred because physicians identified children with chronic conditions that the QuICCC failed to identify. When the questions were readministered at follow-up, physicians corrected errors in rating in 9 case; mothers changed their answers in 5 instances. In 13 instances the issues were known to both parties and appeared to arise in the 'gray zone' or boundary area, where there was disagreement over whether a particular child qualified using the theoretical definition. For 11 children identified as having a chronic condition only by the parent's responses to the QuICCC, physician report appeared to be inaccurate primarily due to the physician's lack of information. In 3 cases where the physician reported the child to have a chronic condition, but the parent did not, the physician appeared to be correct. Follow-up data were incomplete on 1 child. Conclusions: These data support the validity of parent-generated information for the evaluation of health status. Although these findings should be replicated, this study suggests that the QuICCC may be applicable also as a screening tool for individual child identification, provided that several sources of error are considered.