Clinical outcomes are broadly agreed, measurable changes in health or quality of life that result from our care. Constant review of our clinical outcomes establishes standards against which to continuously improve all aspects of our practice.
About the Tracheal Service
The Tracheal Team at GOSH was established in 2001 and is a group of health professionals brought together to provide the full range of expertise needed to treat conditions associated with the trachea (windpipe) and bronchi (branches of the windpipe to each lung). The team sees and treats a wide variety of serious conditions, some very rare, including:
- long segment congenital tracheal stenosis
- tracheo-broncho malacia
- severe laryngo-tracheal clefts
- tracheal tumours
- cardiac problems causing bronchial and tracheal compression
- post FETO (fetal endoscopic tracheal obstruction –used to treat congenital diaphragmatic hernia in some centres) 'mega trachea'
The team comprises specialists in nursing, ear, nose and throat (ENT), interventional radiology, intensive care, cardiothoracic surgery and physiotherapy. In 2006, the Tracheal Service received national recognition as the sole centre for the management of complex tracheal problems. The chart below shows the year on year growth in referrals to the team.
Clinical outcome measures
Long segment congenital tracheal stenosis (LSCTS) is the condition we see most often. The team established the slide tracheoplasty surgical technique as the gold standard approach to treat LSCTS, and has the world’s largest experience of this type of surgery. The technique involves dividing the narrowed part of the trachea, which can sometimes be only 1 or 2 millimetres wide, and sliding the two sections over each other until the part of the trachea that is normal width is reached.
Table 1 below shows our results compared to other units around the world:
1. Early and late mortality for LSCTS
We have the world’s largest series, which means our team has seen the greatest number of patients, and thus we have had the opportunity to build our expertise in the treatment of this condition. We have produced the best outcomes internationally, with the lowest death rates for this serious condition, and our follow up, which extends to 235 months is also the longest available to judge the outcome of this treatment.
Ref: Butler CR, Speggiorin S, Rijnberg FM, Roebuck DJ, Muthialu N, Hewitt RJ, Elliott MJ. Outcomes of slide tracheoplasty in 101 children: a 17-year single-center experience. The Journal of Thoracic and Cardiovascular Surgery 2014; 147(6): 1783-9.
2. Actuarial survival
Actuarial survival is a way of measuring survival that counts the proportion of patients alive (in relation to the expectation of life in a normal population) at a certain point in time, in this case after a slide tracheoplasty. Actuarial survival counts all deaths for a selected population, so this means that patients whose death was unrelated to their tracheal disease would also be counted in this figure.
Figure 2.1 shows our world-leading actuarial survival rate:
The Tracheal Team constantly analyses and refines the referral, diagnostic and treatment pathway to improve these results and this is shown below in figure 2.2, which shows how our results have improved decade by decade. You can also see on these graphs that once a child gets past the first year or so after surgery, they are very unlikely to die from their airway problem.
Figure 2.2 Actuarial survival, by decade:
The team has also identified the main risk factors (presence of other conditions) and their effect on the survival of children with LSCTS. These are:
- LSCTS-associated bronchial stenosis (narrowing of the bronchial tubes)
- distal airway malacia (weakness/ floppiness of the airway beyond the narrowed area)
- clinical need for pre-operative ventilation or ECMO (extra-corporeal membrane oxygenation, which is a sort of heart-lung machine by the bedside). While these are important, they are not as significant as bronchial stenosis or malacia in influencing outcome when analysed together.
Figures 2.3 to 2.6 show these figures, adjusted for each risk factor.
Figure 2.3 Actuarial survival, adjusted for bronchial stenosis:
CTS – congenital tracheal stenosis
CTBS – congenital tracheal stenosis, with bronchial stenosis
Figure 2.4 Actuarial survival, adjusted for pre-operative distal airway malacia:
Figure 2.5 Actuarial survival, adjusted for pre-operative ventilation:
Figure 2.6 Actuarial survival, adjusted for ECMO:
One of the goals of an operation is to surgically correct the problem or improve function without causing problems associated with invasive procedures to the body. As our practice has evolved and our expertise has grown, we have seen a consistent reduction in surgical complications for slide tracheoplasty. During healing, it is expected that the trachea will narrow a little as part of normal scarring, and often the airway becomes a little soft or gets temporary obstruction with tissue called granulation tissue. These natural events are controlled by regular use of a small balloon in the airway for the first few weeks after surgery. A small minority of patients need a stent to keep the airway open. In the early days of our experience, we had to use metal stents that could not be removed once inserted. However, we have worked with a company in the Czech Republic (Ella CS) to make absorbable stents which are of great value in preventing the need for metal stents.
Vondrys D, Elliott MJ, McLaren CA, Noctor C, Roebuck DJ. First experience with biodegradable airway stents in children. Annals of Thoracic Surgery 2011; 92(5):1870-4.
Rijnberg FM, Butler CR, Speggiorin S, Fierens A, Wallis C, Nouraei R, McLaren CA, Roebuck DJ, Hewitt R, Elliott MJ. The influence of stents on microbial colonization of the airway in children after slide tracheoplasty: A 14-year single-center experience. Pediatric Pulmonology 2015; Jan;50(1):79-84.
4. Length of stay
Another focus of the team’s commitment to delivering the best quality care has been to reduce the patients’ length of stay, with particular attention to the time spent on the intensive care units. The chart below shows our marked improvement over time in getting our patients well and fit for discharge after slide tracheoplasty.
Both our complication rate and our length of stay (LOS) can be seen over time in figure 3 below, in the context of the number of ‘slides’ we have performed.
5. Quality of life
Surgical success is only one part of the picture. Crucially, we must understand the effects of the condition and its treatment on the lives of our patients. Data collected should be from the patients’ and their families’ perspectives.
We have conducted the only quality of life study on patients treated with slide tracheoplasty. This took the form of structured face-to-face interviews with parents, patients and carers using:
- PedsQL - a generic health-related quality of life measure for children and teens aged 0-18 years, covering physical, emotional, social and school aspects of life
- Specific child and parent validated questionnaires
- Supplementary questionnaires, used with a subset of parents via in-depth interviews about their lived experience of having a child with LSCTS.
We found that the quality of life of operated LSCTS children was similar to the scores of ‘healthy normals’, i.e. children who completed the questionnaire who did not have health problems. We also found that children with LSCTS and congenital (present at birth) heart disease also scored similarly to their healthy peers. This suggests that children treated for LSCTS can go on to live normal lives.
We continue to actively research and develop our practice so that we are always improving.
This information was published in April 2015 and will be updated in April 2017.