Patient Reported Outcome measures for Neurological patients

Introduction The use of patient-reported outcome measures (PROM) enables to capture some facets of the lived experience of disease that would not be identified by disease severity measures only. Generic disability PROMs enable to get an broad description of the impact of a group of disease, e.g. neurological ones, but they do not capture disease-specific issues. To get to this, disease-specific disability measures are needed, and they can be developed using the ICF. Here we describe the stages of development of three different ICF-based PROMS: a measure of disability specific for Myasthenia Gravis (the MG-DIS), and two measures of work-related problems in Multiple Sclerosis (MSQ-Job) and in headache disorders (HeadWork). Methods Items are developed on the basis of: ICF-based description of disability for specific diseases; a literature review; qualitative patients’ report. Selected themes are then converted into items to be tested with specific research protocols, whose aims are to address the factor structure, deleting non-essential items, and test the psychometric properties of the questionnaire. Results The MSQ-Job is composed of 42 items and is already published [1]; the items of the MG-DIS have been identified [2], and the questionnaire is in course of validation; the HeadWork is at the stage of items development. Discussion ICF-based disability evaluations enable to understand how much of patients’ difficulties are due to their disease, and how much to hindering contextual factors.