Development of the Airway Stenosis Patient Concerns Inventory (PCI-AS)
The Development of a Patient Concerns Inventory for People Diagnosed with Airway Stenosis (PCI-AS)
Research Governance and Integrity Team, Imperial College London
Duration of Study in the UK
0 years, 5 months, 1 days
Airway stenosis (narrowing of the breathing tube) is a rare condition causing
significant physical and psychological problems. A common cause is
when people have breathing tubes placed through their mouths and into their throats
and need help from a breathing machine (ventilator). If this is not done carefully,
it can cause swelling and windpipe narrowing. People are also born with this condition or have illnesses that cause it. For some, the cause is unknown. Some people need a single operation, many need life-long specialist care.
We receive over 70 new referrals each year. Patients often have
complex needs. During a quality improvement project at Imperial College Healthcare NHS Trust, we asked about patients' experiences of their care. They said consultations can be time-limited and they may not have all their concerns listened to. Patients may find it difficult because of voice and breathing difficulties. Patients wanted a simple way to share concerns in busy clinics. We want to develop a PCI-AS to make consultations patient-led and improve satisfaction. A PCI-AS has the potential to improve patient experience and how airway services run. The PCI-AS may also be helpful in the future as many appointments are now provided by telephone/ videoconsultation because of COVID-19.
1. Find out what airway specialists think are the most important patient concerns
2. Meet with patients to find out if their concerns match what clinicians think, what they would like to add and what would help them to complete a PCI-AS. Because of COVID-19, meetings will be held online (e.g. using Zoom). Some people may not be able to use videoconferencing. They can contribute by telephone or by sending us written information.
A final version of the PCI-AS will be developed, ready for introduction and testing in the clinical setting.
Wales REC 7
Date of REC Opinion
5 Mar 2021