The development & piloting of a QoL questionnaire for VCD
Research type
Research Study
Full title
The development and piloting of a Vocal Cord Dysfunction Questionnaire that reliably and accurately captures information about changes in symptom severity and health related quality of life (QoL) in individuals with the condition.
IRAS ID
131483
Contact name
Adel Mansur
Contact email
Sponsor organisation
University of Birmingham
Duration of Study in the UK
0 years, 7 months, 31 days
Research summary
Vocal Cord Dsyfunction (VCD), also known as Inducible Laryngeal Obstruction (IOL) (Pernille et al., 2015) can be characterised as an unpredictable, distressing condition, whereby the vocal cords go into spasm, thus restricting the individual’s ability to breath (Guglani, Atkinson, Hosanagar & Guglai, 2014).
There has been minimal consensus regarding the definitions and diagnostic criteria for VCD, resulting in many individuals being misdiagnosed with asthma (Morris & Christopher, 2010). Consequently, more research is needed to understand VCD’s, symptomology, the lived experience of VCD and treatment outcomes. Formal evaluation of these areas will help address whether diagnosis and treatment has been appropriate and effective.
The completed phase of this project consisted of qualitative interviews with individuals with VCD to understand their lived experience. Alongside VCD focus groups were undertaken as part of a service development initiative. This research was used to develop a questionnaire capturing information regarding Quality of Life (QoL) and symptom severity for those with VCD, with the aim of being able to measure changes over time in response to treatment. QoL has been defined as the participant’s subjective assessment of his/her physical, mental and social wellbeing/functioning (Hauser et al., 2007).
Phase 2 involves piloting and validating the questionnaire in a multi-centre study.This involves conducting cognitive debriefing with 15 participants to ensure the readability of the QoL questionnaire. Following, two samples will be recruited – one sample will consist of those who have been diagnosed with VCD and are six months’ post-treatment and the second sample will consist of those who have been diagnosed with VCD, have undergone nasendoscopy and are commencing therapy. All participants will be asked to complete the QoL questionnaire and comparable validated questionnaires. Experts whom have experience diagnosing and treating the condition have already been consulted regarding their opinion of the relevance of items on the measure.
Guglani, L., Atkinson, S., Hosanagar, A. & Guglai, L. (2014). A systematic review of psychological interventions for adult and pediatric patients with Vocal Cord Dsyfunction. Frontiers in Pediatrics, 2(82), 1-9.
Morris, M. & Christopher, K. (2010). Diagnostic criteria for the classification of Vocal Cord Dysfunction. Chest, 138(5), 1213-1223.
Pernille, C., Heimdal, J., Kent, C., Bucca, G., Cantarella, G., Freidrich, G., Halvorsen, T., Herth, F., Jung, H., Morris, M., Remacle, M., Rasmussen, N. & Wilson, J. (2015). ERS/ELS/ACCP 2013 international consensus conference nomenclature on inducible laryngeal obstructions. European Respiratory Review, 24, 445-450.REC name
South Central - Hampshire B Research Ethics Committee
REC reference
17/SC/0279
Date of REC Opinion
14 Jul 2017
REC opinion
Further Information Favourable Opinion