PP058 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: USE OF INCLUSIVE LANGUAGE TO ENSURE SURVEY INSTRUMENTS ARE PATIENT- AND FAMILY-CENTERED

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Aims & Objectives: As mortality in the pediatric intensive care unit (PICU) declines, there is growing recognition of the post-PICU morbidity experienced by survivors and their families. The Post-Intensive Care Syndrome-pediatrics (PICS-p) Longitudinal Cohort Study is currently mapping out the PICS-p trajectory over a two-year period by asking patients, parents/guardians, and siblings to complete surveys commonly used in pediatrics across multiple timepoints. We identified the need to modify the text of several survey instruments to better engage patients and families. Methods: In response to feedback from our parent advisory group and PICS-p participants, we added free-text options to the PedsQL™ 4.0 Generic Core, Infant, Multidimensional Fatigue, and Cognitive Functioning scales. With the owner’s permission, we modified the wording of the Functional Status Scale (FSS). Results: For the PedsQL™ instruments, participants are provided with a “does not apply to my child/me” option, accompanied by a free-text field to describe functioning in a particular domain. This allows clinical research staff to categorize children of varying medical complexity based on the free-text responses. The FSS scale was originally designed for clinician use and included words such as “normal”. With permission, these terms were replaced with phrases such as “like other children of a similar age”. Conclusions: Words matter. Data are enriched when PICS-p investigators solicit participant’s viewpoints from free-text responses to supplement the testing battery. Using words that patients and families can understand and identify with will enhance our understanding of PICS-p. Keywords: surveys and questionnaires, longitudinal studies, patient-centered care, post-intensive care syndrome

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