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The development of an inpatient functional ability measure among pediatric sickle cell disease

      The purpose of the current study was to understand the difference between perception of ability and actual functional ability for youth with SCD hospitalized for acute pain. We asked patients to rank their perception (i.e., how difficult would this activity be) and actual functional ability (i.e., how difficult was this activity for you today). 96 patients with SCD (60.4% female), ages 8-21 (M=16.19, SD= 3.7), were recruited from 4 centers during their hospital admission for acute pain. Participants completed a preliminary version of the Acute Pain Physical Activity Questionnaire (APPAQ). This measure was developed by a team of experts after a review of the literature, interviews with youth with sickle cell disease and their parents and utilizing data from a previous study performed by team members. The preliminary APPAQ consists of two 40-item questionnaires. One questionnaire assessed perception of difficulty, the second questionnaire assessed the difficulty of actually completing each of the 40 activities. The activities were ranked on a 5-point Likert scale from “No difficulty” to “Impossible.” Perception of ability was significantly associated with actual ability (r=0.67, p<.001). A significant difference between the scores of perception and actual ability was found using a paired-samples t test (t(1, 93) = 8.58, p<.001), indicating that participants endorsed more difficult ratings on perception of tasks than actual difficulty completing activities. The findings of the current study demonstrate a direct correlation between perception of and actual physical function for youth with SCD hospitalized for acute pain although youth with SCD in this setting may perceive physical activities to be more difficult than the actual performance of these activities. Future research should explore whether the measures of perception or actual ability are more appropriate for use in the evaluation of physical function in the acute setting.