Vocal Cord Paralysis Experience (COPE) PROM

Introduction:

The Vocal Cord Paralysis Experience

CoPE stands for the Vocal Cord Paralysis Experience. Led by David Francis, MD, MS, CoPE is a group of medical centers located across the United States who are dedicated to better understanding how patient’s experience vocal cord paralysis. We use patient experiences to inform practice and help optimize treatment plans for each individual patient, based on their personal characteristics and goals for treatment.

As part of this effort, the research team at the University of Wisconsin has developed and validated a patient-reported outcome measurement tool that is specific to vocal cord paralysis (CoPE PROM) through funding by the National Institutes of Health.

Background:

Unilateral vocal fold paralysis (UVFP) is an increasingly common and debilitating neurological condition caused by injury to one recurrent laryngeal nerve. Increased prevalence of head, neck, spine and cardiothoracic surgeries has increased the population at risk for UVFP; these procedures account for 50% of UVFP cases. UVFP complicates up to 15% of thyroidectomies and 11% anterior spine procedures, respectively. In recent decades, these procedures have increased threefold and eightfold, with a corresponding rise in UVFP incidence. UVFP can have debilitating quality of life consequences that include disordered communication, swallowing and breathing, substantial work productivity losses, and decreased psychosocial function resulting in anxiety, isolation, and fear. Treatments for UVFP vary widely, because the degree of spontaneous recovery and timing of intervention vary with the severity of neurological injury. Patients benefit from some interventions, but the optimal type and timing remain undetermined because of insufficient high-quality comparative evidence.

Solution:

The CoPE PROM is designed to give clinicians a guide to track symptoms and treatment effectiveness over time. It is also intended to act as a primary end point in clinical trials comparing the effectiveness and durability of treatments including behavioral (speech therapy), temporary (e.g., injection augmentation), and permanent surgical treatments for UVFP. We established the reliability and validity of the PRO measure in a large, nationally representative sample of adult patients with UVFP from a multicenter consortium of 34 voice centers that treat UVFP, called the CoPE (Vocal Cord Paralysis Experience) Collaborative.

For more information:

Click here to learn more about using the CoPE PROM tool.