Does format matter for comprehension of a facial affective scale and a numeric scale for pain by adults with Down syndrome?

People with intellectual disabilities are at high risk for pain and have communication difficulties. Facial and numeric scales for self-report may aid pain identification. It was examined whether the comprehension of a facial affective scale and a numeric scale for pain in adults with Down syndrome (DS) varies with presentation format. Adults with DS were included (N= 106, mild to severe ID, mean age 37 years), both with (N=57) and without (N=49) physical conditions that may cause pain or discomfort. The Facial Affect Scale (FAS) and a numeric rating scale (NRS) were compared. One subgroup of participants (N= 50) had to choose the two items within each format to indicate 'least pain' and 'most pain'. The other subgroup of participants (N= 56) had to order three faces of the FAS from 'least pain' to 'most pain', and to answer questions about the magnitude of numbers for the NRS. Comprehension percentages were compared between two subgroups. More participants understood the FAS than the NRS, irrespective of the presentation format. The comprehension percentage for the FAS did not differ between the least-most extremities format and the ordering/magnitude format. In contrast, comprehension percentages for the NRS differed significantly between the least-most extremities format (61%) and the ordering/magnitude format (32%). The inclusion of ordering and magnitude in a presentation format is essential to assess thorough comprehension of facial and numeric scales for self-reported pain. The use of this format does not influence the number of adults with DS who pass the comprehension test for the FAS, but reduces the number of adults with DS who pass the comprehension test for the NRS.

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