Assessment of pruritus associated with Alagille syndrome (ALGS) and other pediatric cholestatic conditions is challenging because the patients most severely affected by itching are often very young and there are currently no widely accepted instruments for evaluating this often debilitating symptom in children.

Accordingly, this qualitative, prospective study evaluated the symptoms, signs and impacts of itching in pediatric patients with ALGS, with the aim of developing a clinical outcome tool to assess itching.

Based on this research, two versions of the ItchRO were developed for validation in pediatric cholestatic conditions: a patient version designed for completion by individuals aged 9 years and older, and an observer version to enable caregiver assessment of itching behaviors in children with ALGS who are too young to report their own outcomes.