We are a group of UK researchers (Mr Ahmad Almamary, Dr Amanda Sathyapala, Professor Joerg Steier, Dr Koula Asimakopoulou and Professor Timothy Skinner) developing a package of information, support and coaching to help patients starting CPAP or BiPAP for Sleep Apnoea.
We are aware that many patients struggle to get the information, support and coaching to get them through the initial challenges of using CPAP or BiPAP, particularly where sleep clinics are over-stretched, which can result in them giving up on their treatment. Our most recent analysis suggests at one of our leading London Sleep Centres 55% of patients are not using their CPAP/BiPAP regularly 3 months after starting treatment. This is even worse post-pandemic! Therefore, we are developing this package using what is known from research to help patients increase their CPAP/BiPAP use.
We recognise that you, as patients, know first-hand about what is helpful (and unhelpful) when starting your treatment and would be grateful if you could pass that information on to us by completing this survey, and if your partners, relatives or friends that helped you when you started using CPAP/BiPAP would be willing to contribute, they may also have some valuable suggestions.
We will use your responses to develop the material as part of a package, a research intervention, which will be studied as part of a research study at Imperial College London & Harefield Hospital and Guys & St Thomas’ NHS Foundation Trust over the next 18 months.
We'd like you to think that if you were developing a package of information, support and coaching to help patients starting CPAP, what would you include in this package? These may be things that you received or had to search out yourself, or could be things that you did not receive but you wish had been available. Please give as much information as you can in each section.