Background and Goal of Study:

Post Intubation Laryngotracheal Stenosis (PILTS) is a serious debilitating complication of invasive ventilation. Estimated incidence varies widely from 0.6% to 21% following endotracheal intubation or tracheostomy. Information on the impact this condition has on its sufferers is scarce in the literature. Our aim was to identify the themes emerging around the impact on quality of life reported by PILTS patients. 

Materials and Methods:

Members of an international social media group set up by a foundation established to promote awareness and provide support for the patients affected by tracheal stenosis were invited to take part in a short online survey. It included free text option on the impact the condition has on quality of life, the responses to which were evaluated using thematic analysis assisted by the software package NVivo-11 (QSR International Pty Ltd.; Melbourne, Australia).  

Results and Discussion:

Ninety one participants completed the survey, the majority of which were from the USA. Sixty seven of the respondents have had or currently have laryngotracheal stenosis, while the rest comprised carers and one healthcare professional with interest in LTS. Forty eight percent were diagnosed with PILTS several years after developing symptoms with 90% respondents indicating there was confusion over the diagnosis. Seventy percent needed multiple endoscopic dilatation procedures and 60% had had more than 10 outpatient appointments. Ninety one percent of respondents agreed or strongly agreed with the statement that PILTS has a major impact on their quality of life. The thematic analysis found PILTS affected the individual’s quality of life in the following multiple areas; physical activity, psychological and emotional wellbeing, financial costs, social context with impact on work, family and community. 

Conclusion(s):

This qualitative study suggests that PILTS is usually misdiagnosed for several years. The majority of those diagnosed undergo multiple procedures and surgeries and numerous outpatient appointments, with ninety percent reporting a significant impact on their quality of life. Impact on quality of life varies from personal health through to work and family and the wider community, extending over time. This survey has highlighted the need for further in-depth research into the lived experience of patients with post-intubation laryngotracheal stenosis.

03 / The impact of post intubation laryngotracheal stenosis on quality of life: a qualitative study