Validity and Comprehensibility of Current Shoulder & Elbow Functional Outcomes Measures in Children

OBJECTIVES: To assess the comprehensibility of the Quick Disabilities of the Arm, the Shoulder and Hand Score (Quick DASH) and the American Shoulder and Elbow Surgeons Standardized Shoulder Assessment Form (ASES) in children, identify sources of response errors, and modify items, in order to develop an original, age-appropriate, validated pediatric shoulder and elbow patient-reported outcome (PRO) survey. METHODS: 49 children with shoulder and/or elbow disorders were recruited from a children’s hospital-based orthopedic outpatient clinic. A researcher, who was trained by a behavioral scientist in cognitive interviewing techniques, used a standardized protocol and conducted cognitive interviews to identify children’s comprehension of the QuickDASH and ASES surveys. In Phase One of the study, 39 children (46% female, mean age=15 years; range 10-18) were purposefully sampled based on age and gender, interviewed, and audiotaped. The questionnaires were given in varying sequential order. Interview probes focused on directions, formatting, item content and matching of responses and items. A behavioral scientist analyzed transcripts, modified items accordingly, and created an original pediatric shoulder and elbow PRO. In Phase Two, 10 children (40% female, mean age=15 years) were interviewed to gather feedback specifically on the original pediatric PRO. RESULTS: The average interview time was 26 minutes (range=16 - 44 minutes). 255 comments were generated about the Quick DASH, identifying 60 issues related to item comprehension and 191 issues related to item response format. 51% of children struggled with complex terminology used to describe activities and 41% did not understand symptom-related items such as “tingling”. 294 comments were generated about the ASES, primarily associated with medications (76%) and shoulder instability (47%). Timeframe and format issues were also noted. The resulting original PRO was easy to comprehend, although 40% of children could not interpret a “loose shoulder or elbow”. CONCLUSION: Item comprehension issues were noted in approximately half of the children completing the Quick DASH and ASES. Specific areas of difficulty included items addressing medication use, activity level and symptoms such as shoulder instability and tingling. Modifications were also needed in general instruction, language, survey and item format, layout, and item response mapping. Based on the results of the cognitive interviews, children had minimal difficulty comprehending items and directions of the newly developed pediatric shoulder and elbow PRO. A subsequent study will assess this original PRO’s psychometric properties in an effort to continue its development and provide more comprehensive, methodologically rigorous validation of its use in this population.