Life Experience of Patients With Unilateral Vocal Fold Paralysis

Abstract

Importance: Clinicians and patients benefit when they have a clear understanding of how medical conditions influence patients' life experiences. Patients' perspectives on life with unilateral vocal fold paralysis have not been well described.

Objective: To promote patient-centered care by characterizing the patient experiences of living with unilateral vocal fold paralysis.

Design, setting, and participants: This study used mixed methods: surveys using the voice and dysphagia handicap indexes (VHI and DHI) and semistructured interviews with adults with unilateral vocal cord paralysis recruited from a tertiary voice center. Recorded interviews were transcribed, coded using a hierarchical coding system, and analyzed using an iterative inductive-deductive approach.

Main outcomes and measures: Symptom domains of the patient experience.

Results: In 36 patients (26 [72%] were female, and the median age and interquartile range [IQR] were 63 years [48-68 years]; median interview duration, 42 minutes), median VHI and DHI scores were 96 (IQR, 77-108) and 55.5 (IQR, 35-89) at the time of interviews, respectively. Frustration, isolation, fear, and altered self-identity were primary themes permeating patients' experiences. Frustrations related to limitations in communication, employment, and the medical system. Sources of fear included a loss of control, fear of further dysfunction or permanent disability, concern for health consequences (eg, aspiration pneumonia), and/or an inability to call for help in emergency situations. These experiences were modified by the following factors: resilience, self-efficacy, perceived sense of control, and social support systems.

Conclusions and relevance: Effects of unilateral vocal fold paralysis extend beyond impaired voice and other somatic symptoms. Awareness of the extent to which these patients experience frustration, isolation, fear, and altered self-identity is important. A patient-centered approach to optimizing unilateral vocal fold paralysis treatment is enhanced by an understanding of both the physical dimension of this condition and how patients cope with the considerable emotional and social consequences. Recognizing the psychosocial dimensions of disease allows clinicians to communicate more effectively, be more empathetic, and to better personalize treatment plans, which may lead to improved patient care and patient satisfaction.