The Burden of Small Fiber Neuropathy: Changes in Pain, Costs, and Quality of Life Before and After Diagnosis

Abstract

ABSTRACT Background and Aims Small fiber neuropathy ( SFN ) is a peripheral neuropathy causing neuropathic pain, reduced quality of life ( QoL ), and high societal costs. Previous studies assessed these societal costs before a definitive diagnosis was established, leaving it unclear whether diagnostic confirmation affects costs, pain intensity, or QoL . This study assessed changes in these outcomes before and after diagnosis. Methods Patients referred to the tertiary SFN expertise center in the Netherlands completed questionnaires before diagnosis (at placement on the waiting list, approximately 7 months before consultation) and at 3 and/or 6 months after confirmation. Healthcare utilization, patient and family costs, and productivity losses were assessed using the iMTA Medical Consumption and Productivity Cost Questionnaires. QoL was measured with the EQ‐5D‐5L and pain intensity with a numeric rating scale. Missing data were handled using multiple imputation, and changes over time were analyzed using within‐subject comparisons and generalized linear mixed models. Results Eighty‐four patients completed both pre‐ and postdiagnosis questionnaires. After follow‐up, total healthcare costs, patient and family costs, productivity losses, pain intensity, and QoL remained unchanged. However, diagnostic confirmation of SFN was associated with fewer medical specialist visits, lower related costs, and improved health perception. Interpretation These findings suggest that diagnostic clarification alone is insufficient to reduce the overall burden of SFN, highlighting the need for more effective symptom management and supportive care strategies.