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Published online by Cambridge University Press: 24 May 2024
Background: The use of patient reported and functional outcome measures in routine practice enhances shared decision making and supports patient-centred care. This study compared the perspectives of Chronic Inflammatory Neuropathy (CIN) patients and providers regarding their experience using an outcome measure panel. Methods: A one year study was conducted to evaluate a nine measure outcome set in routine clinical practice for CIN. The panel included patient-reported outcome measures (e.g., I-RODS and EQ-5D-5L) and functional measures (e.g., grip strength). At the conclusion of the study, participants and providers completed an online questionnaire on their experience. Results: 25 patients and five providers completed the questionnaire. Both patients and providers reported benefit in tracking disease progression, supporting treatment-related decisions, and broadening views of health. Both groups agreed patient involvement in care was enhanced. Preference for specific measures, frequency, and data presentation differed. Providers emphasized integration into electronic medical records and streamlining processes. 100% of providers and 80% of patients wanted to continue completing outcome measures. Conclusions: CIN patients and providers recognize the value of integrating outcome measures into routine care. To effectively implement these measures in clinical settings, it is important to understand the patient and provider perspective and prevent unnecessary burdens to ensure sustainability of use.