Validation of a Measure of Oral Health in Infants with Down Syndrome

Objectives: To validate English and French language versions of a proxy questionnaire designed to describe oral health in infants aged 0-3 years, with Down syndrome (DS). Methods: A preliminary, French-language version was revised and translated into English and validated. To validate the questionnaire, it was distributed to members of the Canadian Down Syndrome Society who completed the questionnaire twice. First, concerning their child with DS and then for the sibling closest in age without DS. Data concerning 225 0-3 year old infants with DS and 142 of their siblings were used for evaluations of internal consistency (Cronbach’s a), discriminatory ability (difference between DS and sibling domain scores) and cross-cultural equivalency (no difference in domain scores across language groups). A clinic-recruited sample of 22 parents of 0-3 year old infants with DS was used to evaluate test-retest reliability (intra-class correlation coefficient [ICC]). Results: A 21-item questionnaire with three domains (communication, eating and oral symptoms) was tested. Cronbach’s a for the total questionnaire was 0.78. Cronbach’s a for the three domains was 0.69 (communication), 0.75 (eating), 0.46 (oral symptoms). The whole questionnaire and each domain discriminated between infants with DS and their siblings (p<0.0001 for all comparisons [paired t-test]). With the exception of the eating domain (p=0.038 [Mann-Whitney test]), the scores for the total questionnaire and each domain were not different across language groups. ICCs for the total questionnaire and the communication, eating and oral symptom domains were 0.94, 0.88, 0.74 and 0.90 respectively. Conclusion: This work demonstrates a valid, proxy questionnaire to describe oral health in infants aged 0-3 years with DS. This questionnaire is similar to one developed for people with DS aged 4 years and older. Research supported by Toronto Hospital for Sick Children Foundation (Grant XG 01-038) and Canadian Institutes of Health Research (Grant MOP-43897)