International field test of limb-q kids: an internationally applicable patient-reported outcome measure for lower limb differences

Introduction LIMB-Q Kids is a new patient-reported outcome measure (PROM) for children with Lower limb differences (LLDs). The objective is to conduct an international field test study. Materials & Methods A mixed method multiphase approach was used to develop LIMB-Q Kids. In phase one, a systematic review was conducted to identify concepts from existing PROMs used in research with children with LLDs. A preliminary conceptual framework derived from the systematic review informed an international qualitative study. The data from qualitative interviews were used to form the LIMB-Q Kids, which was further refined through multiple rounds of cognitive debriefing interviews with children. Input was obtained from parents and healthcare professionals from Australia, Canada, Ethiopia, India, UK, and the USA. LIMB-Q Kids was translated and culturally adapted into multiple languages. Results The final field-test version consists of 11 scales (159 items) that measure appearance, physical function, symptoms (hip, knee, ankle, foot, and leg), leg-related distress, and school, social and psychological function. This version was rigorously translated into Danish and German. Translations that are in progress include Arabic, Finnish, Hindi, Swahili, Portuguese, Spanish, and Luganda. An international field-test study is underway in nine countries (15 sites with a target recruitment of 150 participants per country). At the time of abstract submission, 190 patients from seven sites have completed LIMB-Q Kids. The UK collaborative has worked on language adaption for the UK and is currently validating the score across five paediatric limb reconstruction units. Conclusions No internationally applicable PROM exists for children with LLDs. We present the current progress in developing and validating such a score. Data from the international field-test study will be used to reduce items and perform psychometric testing of LIMB-Q Kids. The rigorous translation and cultural adaption process will provide versions of LIMB-Q Kids in different languages. Once completed, the LIMB-Q Kids will provide a common metric for outcome assessment for children with lower limb differences internationally.