[Skip to Content]
[Skip to Content Landing]
Views 809
Citations 0
Original Investigation
April 5, 2018

Life Experience of Patients With Unilateral Vocal Fold Paralysis

Author Affiliations
  • 1Division of Otolaryngology, Department of Surgery, Wisconsin Surgical Outcomes Research, University of Wisconsin, Madison
  • 2Vanderbilt Voice Center, Department of Otolaryngology, Vanderbilt University Medical Center, Nashville, Tennessee
  • 3Vanderbilt Qualitative Research Core, Institute for Medicine and Public Health, Department of Psychology, Vanderbilt University, Nashville, Tennessee
  • 4VA Outcomes Group, Department of Veterans Affairs Medical Center, White River Junction, Vermont
  • 5Section of Otolaryngology in Geisel School of Medicine at Dartmouth, Hanover, New Hampshire
  • 6The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, New Hampshire
JAMA Otolaryngol Head Neck Surg. Published online April 5, 2018. doi:10.1001/jamaoto.2018.0067
Key Points

Question  What is it like to live with unilateral vocal fold paralysis from the patients’ perspective?

Findings  In this survey study of 36 patients, frustration, isolation, fear, and altered self-identity were the primary themes expressed by patients with unilateral vocal fold paralysis.

Meaning  The consequences of unilateral vocal fold paralysis extend beyond somatic complaints to affect a person’s sense of identity and psychological well-being; identifying, exploring, and validating these experiences may help shared decision-making processes, further personalizing patient management, and improve outcomes.

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.

×