Development and Validation of a Pediatric Endocrine Knowledge Assessment Questionnaire: Impact of ac Pediatric Endocrine Knowledge Assessment Questionnaire Intervention Study

• Published in: Journal of clinical research in pediatric endocrinology 2016-12, Vol.8 (4), p.411-418
• Main Authors: Gupta, Nidhi, Zidan, Marwan, Moltz, Kathleen, Adhikari, Amita, Buggs-Saxton, Colleen, Zidan, Hanaa, Abushanab, Dania, Lteif, Aida, Edwin, Chandra
• Format: Article
• Language: English
• Subjects: Adolescent; Adrenal Hyperplasia, Congenital - diagnosis; Adrenal Hyperplasia, Congenital - therapy; Adult; Beliefs, opinions and attitudes; Child; Child, Preschool; Children; Congenital Hypothyroidism - diagnosis; Congenital Hypothyroidism - therapy; Diseases; Female; Graves Disease - diagnosis; Graves Disease - therapy; Growth Hormone - deficiency; Hashimoto Disease - diagnosis; Hashimoto Disease - therapy; Health aspects; Health Knowledge, Attitudes, Practice; Humans; Infant; Male; Middle Aged; Original; Parents; Parents - education; Parents - psychology; Patient Education as Topic - methods; Prospective Studies; Reproducibility of Results; Surveys and Questionnaires - standards
• ISSN: 1308-5727; 1308-5735
• DOI: 10.4274/jcrpe.3171

While there is general agreement that patient education is essential for compliance, no objective tools exist to assess knowledge in children and parents of children with endocrine disorders. We aimed to design and validate a Pediatric Endocrine Knowledge Assessment Questionnaire (PEKAQ) for congenital hypothyroidism, Hashimoto's thyroiditis, isolated growth hormone deficiency, Graves' disease, and congenital adrenal hyperplasia. We evaluated baseline knowledge of children and parents of children with these disorders and assessed impact of educational intervention. At baseline, 77 children (12-18 years) and 162 parents of children 1-18 years participated in this prospective intervention study. Educational handouts for five targeted disorders were designed. Following one-on-one educational intervention, 55 children and 123 parents participated. Baseline and post-intervention knowledge scores were compared using McNemar's test. Adequate multi-rater Kappa measure of agreement was achieved for children's (0.70) and parent's (0.75) PEKAQs. Flesch Reading Ease Score for both PEKAQs (15 questions each) was 65. Post-intervention, significantly higher proportion of parents and children answered majority of questions correctly (p