P.029 Relevance and home completion rate of patient reported outcome measures set in chronic inflammatory neuropathies

Abstract

Background: Patient-centred care is important in the management of chronic inflammatory neuropathies (CIN) given the heterogeneity in disease course and treatment response. Patient Reported Outcome Measures (PROMs) support value-based healthcare by aligning treatment goals with what matters most to patients. This study evaluated the relevance of PROMs to patients and the feasibility of use in clinical management. Methods: PROMs assessing quality of life, pain, fatigue, and overall disability were collected prospectively from 32 patients with CIN every three months over a 12-month period. Patients provided feedback on relevance of the measures. PROMs were sent electronically prior to the visit. Results: Completion rate was 92%. Home vs. in-clinic completion increased from 56% to 85% over the course of the study. There was an association between completion of the panel and perceived relevance. The PROMs were consistently rated as highly relevant, with disability and fatigue measures rated highest. Conclusions: PROMs are appraised as highly relevant among patients with CIDP and MMN. Patients require support initially but adapt to electronically delivered home completion of questionnaires. We recommend inclusion of PROMs into routine clinical practice as a means of capturing aspects of health that are not easily assessed in a clinic visit.