Paediatric tracheostomy patients require long-term specialist care. The purpose of this study was to evaluate the utility and value of an application based “Patients Know Best” online system in the clinical care and management of paediatric patients with established tracheostomies within a large geographical area of South Wales.
An online survey comprising quantitative questions, using a 1- 10 Likert-type Scale on several domains, and qualitative questions was developed and disseminated to the caregivers of all 29 paediatric tracheostomy patients in South Wales. The response rate was 93%, M: F 13:14, age range 1–14 years.
The paediatric tracheostomy “Patients Know Best” online system facilitates a secure and useful communication channel for caregivers with specialists. This study demonstrates this is of value to substitute the need for physically attending an appointment, which is convenient for patients with complex needs and their caregivers. This is particularly relevant for patients living a significant distance from these clinical services. Further work will include providing educational resources and support for caregivers using this online system.