Stakeholder-Engaged Measure Development for Pediatric Obstructive Sleep-Disordered Breathing: The Obstructive Sleep-Disordered Breathing and Adenotonsillectomy Knowledge Scale for Parents.

Importance: Parental decision making about adenotonsillectomy (AT) for obstructive sleep-disordered breathing (oSDB) is associated with decisional conflict that may be alleviated with improved knowledge about symptoms and treatments.

Objective: To develop a measure of parental knowledge about oSDB and AT.

Design, Setting, and Participants: A sequential design was used for scale development. A prototype measure containing 9 oSDB and AT themes and 85 items was administered in survey format via an online platform. Participants included 19 clinician experts (otolaryngologists and pediatricians) and 13 laymen (parents of children who snore or do not snore, and other adults). Quantitative and qualitative responses were used to modify the measure and create the knowledge scale. Content validity of the scale was established through expert feedback and evaluation. Criterion validity was established with t test comparisons of experts with laymen. Reliability of the responses was assessed with Cronbach α testing.

Main Outcomes and Measures: An 85-item prototype measure and 39-item modified measure were evaluated for consensus/approval and psychometric integrity.

Results: Of 45 potential participants, 32 individuals (71%) responded to the prototype scale. Respondents included 19 clinician experts (59%) (otolaryngologists and pediatricians) and 13 laymen (41%) (parents of children who snore [n = 8] or do not snore [n = 2] and other adults [n = 3]); demographic data were not collected. Content analysis and qualitative feedback were largely rated positively: 27 respondents (84%) stated that the measure was a good evaluation of knowledge, 30 respondents (94%) commented that the items were clear, and 31 individuals (97%) approved of its organization, although there were several suggestions for rewording and/or addition of response options. Experts identified themes most important for assessing oSDB (symptoms) and AT (experiences: risks and benefits) knowledge. These qualitative comments were used to modify the scale, and items were eliminated if more than 2 were reported as misleading or less than 85% of clinicians provided correct responses. Five themes (oSDB symptoms, treatment options, AT risks, anesthesia, and AT benefits) and 39 items composed the final scale. Experts scored higher than laymen on the oSDB and AT Knowledge Scale for Parents overall (17 [94%] vs 12 [67%]; Cohen d = 1.96; 95% CI, 1.05-2.86) and within all themes, including experiences of children with oSDB (19 [88%] vs 13 [62%]; Cohen d = 1.53; 95% CI, 0.71-2.32), treatment options (19 [97%] vs 12 [68%]; Cohen d = 1.74; 95% CI, 0.88-2.57), AT risks (17 [97%] vs 12 [59%]; Cohen d = 1.94; 95% CI, 1.03-2.83), anesthesia (17 [97%] vs 12 [79%]; Cohen d = 1.09; 95% CI, 0.29-1.88), and AT benefits (17 [95%] vs 12 [67%]; Cohen d = 1.28; 95% CI, 0.46-2.09), demonstrating criterion validity. All responses demonstrated high reliability (Cronbach α = 0.94).

Conclusions and Relevance: The oSDB and AT Knowledge Scale for Parents is psychometrically sound for use in the assessment of parental knowledge.