The main aim of the app was to deliver specific NICE guidance by advising “on educational and behavioural strategies to minimise impact of hearing loss” (Recommendation 1.3.2, CG60). This was a core component of all 3 care pathways within the NICE guideline and therefore the main aim of the app.
The app allows children to work on educational strategies to prevent them falling behind with speech, language, listening skills and learning when they have glue ear, Whilst providing parents with up- to-date “evidence based written information“ as suggested in NICE CG60 and behavioural strategies.
The guideline introduction includes “special consideration” for children with cleft palate and Down syndrome. The app we designed was inclusive of these conditions. The guideline states that “the main problems cited by parents...were hearing, behaviour and speech“. These were addressed within the app by allowing parents to track their child’s hearing and access remote speech and language therapy if needed.
Aims and objectives
The app aims to deliver accurate accessible information for parents across services in a paperless system. The NICE guideline highlights the problem that “parents and carers often receive well-meant but erroneous advice on a variety of non-surgical treatments for OME”. In our experience of patients and their families we found this was true, since parents had Googled non-evidence based and sometimes dangerous interventions.
The app was designed to contain evidence based, reliable, trusted advice as stated in the guideline. “Clinicians should be aware that there is a wealth of information available through charities, the internet and particularly NHS Direct” therefore the app directs parents to these and further trusted links.
The app provides a universally available part of the NICE care pathway, that can be replicated across services and minimise the high level of variability across the country that the NICE guideline CG60 highlights and provides appropriate help and support for children in a format they like and recognise (an app) and have come to expect.
The app is a digital solution in line with the NHS Long Term Plan, that takes into account children with additional needs. The care pathway in CG60 section 1.3 recommends an active observation period of 3 months and where “educational and behavioural strategies to minimise the effects of the hearing loss should be offered”. The app aims to provide these strategies in a way that children can engage with.
As well as ensuring children can receive speech and language therapy in the community to stop them falling behind with speech and language development which is a common concern for children with glue ear. This particularly aimed to serve the children with Down's syndrome and cleft palate who the guideline asked to be given “special consideration”.
Reasons for implementing your project
Before the project started, several sites were carrying out the 3-month “active observation” part of the care pathway of glue ear management in children in variable ways; with information that did not signpost families to further information as suggested should be practiced by the NICE guideline CG60.
The biggest concern was that during the active observation period, advice on educational and behavioural strategies to minimise the effects of the hearing loss that the guideline recommends should be offered, in practice was found to be limited in the information actually being provided to patients and families.
The clinical guideline states that children with Down's syndrome and those with cleft palate are particularly susceptible to OME and require special consideration. In practice we found that the information had not been designed specifically with these patients needs in mind.
A patient group provided the voice of patients who felt unempowered over the 3-month waiting period and subsequent waiting between appointments. Parents wanted to know more about their child’s condition and wanted to have more control about how to help their child especially of their child had additional needs or had speech and language difficulties.
Due to waiting lists, 200 children’s journeys were looked at and it was found that children had a hearing loss for a year on average and this placed risks on their learning and development. NICE guidance was recommending “ strategies to minimise the effects of the hearing loss should be offered”, so we designed a software application to deliver both information and advice to parents/ carers as well as books games and songs to help children’s speech, language and listening skills. Additionally, the app acts as a platform to track hearing at home and share speech and language therapy sessions confidentially.
How did you implement the project
Funding was sourced from charities and Health Education East of England. The content and design of the app had to follow the NICE recommendations, and the advice of audiologists, speech and language therapists, sensory needs teachers, paediatricians and ENT surgeons.
Families were asked before starting the project and the first version of the app was trialled with families, where we then found many tweaks and changes were needed. Further funding was needed as more changes were needed.
There were many barriers to the research including: no public Wi-Fi access in clinic, as well as poor phone reception meaning we couldn’t help families to download the app onto their own device. Many staff were unfamiliar and uncertain about apps, so in order to provide reassurance the app was CE marked as a class 1 medical device, it was assessed (and given a high score 82%) by a medical app company called Orcha, which all came with additional costs.
The app was also put forward for awards and then won both the Leading 1 Health care award and Children’s app of the year 2019 award at the UK app awards. This reassured staff who began to adopt the app into the pathway.
The app content met the NICE care pathway aims. 73% of families downloaded the app and used it. Children liked the app and used it between appointments. The app was free and therefore had a cost saving on the leaflets given out, it also helped the Trust reach the paperless 2020 target.
Families who used the app were more engaged with the care pathway and felt more in control of helping their child between appointments.
Staff felt pleased to have all the information in one place and the app included a feedback form on the clinical service. Staff were pleased the app was popular with children, but more importantly felt children were better served during the pathway.
Key learning points
Making an app was a huge undertaking that took 2 years and involved many late nights wondering if it was worth it. The app is now free and is available for anyone to use who could benefit.
Clinicians are welcome to avoid the time, expense and frustrations of making their own app, and are welcome to use the Hear Glue Ear app with their patients and together we can learn more and contribute to the understanding around this topic.
Find out more about the Hear Glue Ear project at www.hearglueear.wordpress.com
Funding from a charity ‘The Cambridge Hearing Trust’ allowed development of the Hear Glue Ear app (software application). Funding from Health Education England: East of England, allowed funding to trial the app with families.