Title: What are the voice and swallowing concerns and outcomes of adults with laryngotracheal stenosis before and after airway surgery?
Funder: Health Education England

Abstract: Adult laryngotracheal stenosis has a range of causes including congenital and autoimmune conditions, idiopathic subglottic stenosis and prolonged ventilation on Intensive Care Units (Nouraei and Sandhu; 2013). Patients with this disorder often require tracheostomies and experience symptoms including breathlessness, stridor, voice problems (Bryans et al; 2013) and swallowing difficulties (Lennon et al; 2015). This impacts on their psychosocial needs and leads to secondary issues such as obesity and depression (Roe et al 2016). Consequently, patients frequently access NHS resources for their multiple health needs.The National Centre for Airway Reconstruction at Imperial College Healthcare NHS Trust is the largest of its kind in Europe. We treat over 70 new patients a year from across Europe and are the last hope for patients who have had unsuccessful treatment elsewhere. Surgery aims to improve patients' stenoses, which improves their breathlessness, airway size and often results in decannulation (Nouraei and Sandhu 2013, George et al 2005). Voice and swallowing may be impacted by this surgery and this is the focus of my research interest. Little is understood about the effect of this surgery upon voice and swallowing as well as the impact on quality of life. It is unclear whether the improvement in breathlessness is counterbalanced by degradation in voice and swallowing or leads to improvements. This lack of knowledge makes it challenging to design Speech and Language Therapy (SLT) provision and care pathways. Better understanding will lead to an improvement in the management of voice and swallowing outcomes and expectations. This research study has been designed to fulfil this remit. My plan is to: Carry out a Systematic Review Aim: To complete a systematic review to identify the current knowledge base for the question: What are the voice and swallowing difficulties of adult patients with laryngotracheal stenosis? Workstream 1: Aim: A qualitative study exploring patient experiences of living with laryngotracheal stenosis and treatment of the condition, focusing on swallowing and voice difficulties. Method: A qualitative approach using focus groups will be employed. Framework methodology (Ritchie and Lewis, 2003) will be used to analyse data from 3-4 focus groups with 4-5 patient representatives at each discussion. If data saturation is not reached at this stage, further groups will be held. This will identify key themes and allow for structuring and analysis of the data in order to clearly summarise patient's concerns and experiences and consider wider applications of the data. Workstream 2: Quantitative observational study using repeated measures design Aim: To explore voice and swallowing status and outcomes of patients with laryngotracheal stenosis pre- and post- surgery to improve breathing. Method: Clinicians will use a battery of outcome measures to evaluate the voice and swallow status of airway patients prior to reconstructive surgery, two weeks and six months post-surgery. Outcome measures will include patient directed questionnaires describing voice and swallowing problems, clinician directed outcomes and physiologic outcomes. Analyses of these outcomes will be compared with patient characteristics (age, gender, cause of laryngotracheal stenosis, improvement in breathing post-surgery) to determine relationship between these features and voice and swallowing problems.Potential Benefits Development of an individualised, stratified care pathway will lead to better SLT input and care for patients, for example if there is a particular link between cause of stenosis and worsened voice and swallowing post-surgery it will allow SLTs to prepare patients in a timely manner, and also support them beyond 6 months if they are continuing to have difficulties. Similarly, if there is a clear subgroup of patients who don't experience voice and swallowing problems, but have other difficulties they can be signposted to other specialities as appropriate.

Lay abstract: Airway stenosis is a narrowing of the windpipe between the throat and the lungs. We don't always know why it happens but for some it might be in response to radiotherapy, being on a ventilator (breathing machine) for a long time or because of a childhood illness. People with this problem experience a range of distressing symptoms such as shortness of breath, wheeziness, a hoarse voice and swallowing difficulties. To help people's breathlessness, a tube, called a tracheostomy, may be put in the throat. For more long-term solutions, patients come to specialist centres such as ours to have complex surgery to widen the windpipe. Importantly, this successfully improves people's breathing. However, patients and Speech and Language Therapists (SLTs) have concerns that this surgery may not improve the voice and swallowing symptoms and indeed it might make them worse. As a SLT, I am interested in understanding the impact of this surgery on voice and swallowing symptoms and this is the focus of my research. I talked to patients with this condition who have already had surgery with us and they helped shape this project. First, I will talk to small groups of patients about what they find difficult about living with airway stenosis, including their voice and swallowing problems. I will also ask them what they think about the care they have received and the changes surgery has made to their lives. Second, I will measure patients' ability to swallow and use their voice before they have surgery, two weeks and six months after surgery. The aim of this is to track what actually changes in voice and swallowing ability rather than rely on our suspicions. Finally, I will find out if there is a link between voice and swallowing problems and the cause of the windpipe narrowing or the type of operation. I will use my results to answer the following questions: What symptoms bother the patients? What do patients want from their healthcare providers? Is our pathway of care the best it can be? What impact does airway surgery have upon voice and swallowing? What changes do our team need to make to improve things? What other research needs to be done to help people with airway narrowing?Throughout the study I will be guided by a panel of our airway stenosis patients who have agreed to attend meetings as well as be in contact one to one through the duration of my project. They will be kept informed about the results and help steer the research direction. The panel will be supported and given training in their role by our Patient Experience Research Centre. In addition, this group of patients will help to publicise my findings through their special interest charity, the Airway Stenosis Patient Association (ASPA). This will ensure the research results reach patients across the country. I will also present my findings both locally and at national and international conferences within the SLT and Ear, Nose and Throat professional networks to make sure that other professionals hear about my work. I will publish my findings in peer reviewed journals. I will use social media and our website to publicise the results. Finally, I will have the help of the Imperial Communications team to communicate my results as widely as possible.

Research activity codes: 6.4 SURGERY
Health categories: RESPIRATORY