Perception versus ability: physical function in pediatric sickle cell disease

      The relationship between pain and physical function among pediatric chronic pain populations has been established in the literature. However, measures of physical function in pain patients have only been developed for use in outpatient settings. There are currently no measures of functional ability developed for use in the acute inpatient setting. A measure of physical function in the acute hospital setting would be useful for youth with sickle cell disease hospitalized with vasoocclusive pain. The purpose of this study was to inform the development of a physical function measure for the inpatient setting by understanding the differences 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). We hypothesized that participants would endorse higher levels of difficulty in perception than actual ability due to their current acute pain experience. 148 unique patients with SCD (54.7% female), ages 8-21 (M=15.83, SD=3.90), were recruited from 4 centers during their hospital admission for acute pain. Participants completed a newly developed functional ability measured called the Inpatient Pediatric Physical Activity Questionnaire (IPPAQ) within 24 hours of admission. The IPPAQ consists of two 40-item questionnaires. One questionnaire assessed perception of difficulty completing 40 daily activities and the second questionnaire assessed the difficulty of actually completing each of the activities. There was a significant difference between the scores of perception and actual ability using a paired-samples t test (t(145) = 11.40, p<.001), indicating that participants endorsed more difficult ratings on perception of tasks than actual difficulty completing activities. This finding suggests that children and adolescents with SCD may perceive that physical activities to be more difficult than the actual performance of these activities.