Patient-reported Outcomes—An Emerging Cornerstone of Effective Intravenous Immunoglobulin Therapy

Abstract

Intravenous immunoglobulin (IVIG) therapy is increasingly important in the management of various immune-mediated neuromuscular disorders including chronic inflammatory demyelinating polyneuropathy (CIDP), multifocal motor neuropathy (MMN), myasthenia gravis (MG), and other neuromuscular disorders. Administrative burden, quality of life (QoL) concerns, adverse event prevention, economic pressures, and logistical factors are driving greater IVIG use into the home setting where it is administered by nurses. Patient-reported outcome measures (PROMs) are selfassessment instruments designed to measure a patient’s disability, QoL, or their perceptions of health status in relation to specific diseases. PROMs may be a valuable means of monitoring disease status and treatment efficacy in patients receiving IVIG at home. Case reports and small clinical studies show that various specific and general purpose PROMs, such as the 15-item MG-specific QOL (MG-QOL15) and the Myasthenia Gravis Activities of Daily Living scale (MG-ADL), can provide valuable information for patient monitoring at home. PROMs may help to alert physicians that earlier follow-up or treatment regimen changes are needed. PROM data recording systems such as Walgreens’ PartnerPoint Clinical ManagementSMmaintain regular reporting to the physician and enable efficacy and adverse events to be tracked. Pilot studies of patients with neuromuscular disease receiving IVIG at home demonstrate a strong correlation in PROM scores between assessments administered by pharmacy clinical staff and those administered by physicians indicating the reliability and suitability of PROMs for remote patient management. Further work to validate additional commonly used PROMS for autoimmune disease is needed if they are to be useful when administered outside the physician clinic.