Patient and healthcare professional perspectives on fatigue assessment in pediatric inflammatory bowel disease

患者和医护人员对儿童炎症性肠病疲劳评估的看法

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Abstract

Pediatric patients with active and quiescent inflammatory bowel disease (IBD) have known fatigue, but there is limited understanding of how fatigue is clinically assessed. This study explored perspectives of pediatric IBD patients and healthcare professionals (HCPs) regarding fatigue assessments. A multidisciplinary team, including two patient advocates, recruited pediatric IBD patients and HCPs from the ImproveCareNow network to complete cross-sectional, REDCap surveys. Forty-three pediatric patients with IBD (M age 14.2 years old, 54% female) completed the patient survey; 56% had clinically elevated fatigue on the PROMIS Fatigue Short Form and >67% endorsed their HCPs had never or not often asked about fatigue. Sixty-six HCPs (70% physicians or advanced practice nurses, 61% female) completed the HCP survey, with 61% reporting routinely asking about fatigue in clinical visits. Study findings demonstrate discrepancies in patient and HCP perspectives regarding fatigue assessments and the need to improve assessment and care for fatigue in pediatric IBD.

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