Assessment of patient experience with unilateral vocal fold immobility: a preliminary study

Abstract

Objective: Systematically moving toward patient-centered care for unilateral vocal fold immobility (UVFI) requires comprehensive understanding of the variability of actual patient experiences. This rigorous qualitative study assesses UVFI-related disability and proposes a preliminary taxonomy of UVFI patient experience.

Study design: (1) Semistructured interviews and (2) taxonomy development.

Methods: Consecutive UVFI patients presenting July to September, 2012, prospectively underwent open-ended interviews investigating how UVFI affected their quality of life (QOL) and had caused disability. Comments reported by >20% were synthesized into axes based on content similarity. Variables were arranged into a preliminary taxonomy of UVFI patient experience, which was evaluated for four attributes of face validity.

Results: The majority of 39 patients had "extensive" baseline voice use (56%) and an iatrogenic etiology (62%). Taxonomy of patient experience included three main axes of symptomatic classification: (1) voice, (2) swallowing, and (3) breathing-all with intrinsic (physical and emotional) and extrinsic (social) subaxes that describe major impacts on QOL. Voice complaints were 100% penetrant, whereas breathing and swallowing symptoms afflicted 76% and 66%, respectively, of interviewees. Of affected patients, solid and liquid dysphagia was experienced by 70% and 63%, respectively. Of dyspneic patients, shortness of breath existed with talking (97%) and exercise (72%). Persistent throat congestion (76%), weakened cough (62%), globus (62%), and dysfunctional valsalva (41%) were frequent.

Conclusions: Patient experience with UVFI has been incompletely characterized. This qualitative assessment and preliminary taxonomy highlight several related patient experiences not well documented in the literature or incorporated into currently available metrics.

Keywords: Classification; Dysphagia; Dysphonia; Dyspnea; Patient experience; Patient-centered care; Quality of life; Taxonomy; Unilateral vocal fold immobility; Unilateral vocal fold/cord paralysis.