Synopsis
The Youth Empowerment Skills (YES) programme is a novel psycho-educational intervention for young people(age 14-20 years) with type 1 diabetes, co-developed by young people and co delivered by a multidisciplinary team of healthcare professionals, youth workers and peer educators.
YES programme consists of following elements and methods of learning.
- Group-based learning;
- Immersive simulations, such as treating an episode of severe hypoglycemia, with a structured debriefing;
- Learning together in adventurous/challenging and social activities to build self-confidence;
- Role-play, to develop confidence in health consultations and reduce conflict in Interactions with parents and friends
- Peer-to-peer delivery.
- Whatsapp youth-worker moderated peer support network
Ambition
The NHS Long Term Plan sets out to implement age appropriate care, integrating physical and mental health services and supporting transition to adult services for young people living with diabetes.
Despite having access to free healthcare and technology, teens in the UK have the worst HbA1c in Europe. The peak age for diagnosis of type 1 diabetes is between 10-14 years in the UK with a mortality gap of 16 years shorter compared to people without diabetes and 10 years shorter than those diagnosed at an older age. UK data show that there is a deterioration in glycemic control and increase in acute hospital admissions as children reach adolescent years.
22% of England’s 14-22 year olds living with type 1 diabetes (aged 14-24) live in London with 1728 young people (aged 14-19) with type 1 diabetes living across London. 22.5% of London falls within the most deprived 20% regions across England.
As children and young people transition to self-managing their diabetes, social and emotional changes can negatively impact diabetes management leading to increased admissions to hospital for hypoglycemia or diabetic ketoacidosis with an average cost of £3,000 per episode. Further poor self-management may result in harmful and expensive diabetes related complications in life such as renal disease and foot amputations. Long-term diabetes complications are particularly high in people who develop diabetes before adolescence.
There are a range of diabetes structured education programmes available for people living with diabetes, however they all focus on glycaemic control. A study was conducted by Royal College of Pediatrics and Child Health with over 300 adolescents in 2019. Young people called for youth friendly services, more recognition of and access to mental health support and skills for health.
The YES programme combines diabetes structured education, together with exploring the importance of emotional and social well-being and teaches crucial skills for crisis and self-management. It is the first structured education programme internationally to use simulation for patient education. Programme is delivered outside hospital setting (youth centres). The overall aim of the YES programme was to address the psycho-social burden associated with diabetes as a teenager while providing them with diabetes specific skills and knowledge. Our hope was addressing psychological impact as well as improving knowledge would lead to improved diabetes outcomes and reduced unplanned hospital admissions, thereby improving health, improving quality of life as well as reducing the cost to the health service.
Outcome
The YES programme’s emerging data has shown an improvement in clinical outcomes, better patient experience and cash avoidance for the wider health economy. Most structured education programmes struggles to engage with patients from ethnic minorities and patients from lower socio-economic classes. However YES programme is able to engage with patients from hard to reach ethnic backgrounds as well as patients experiencing high social deprivation.
Based on 66 young people attending YES programme from 12 CCG’s in South London the clinical outcomes were:
- 54% of YES attendees are Afro-Carribean and Asian
- 64.%% of YES attendees are from the lowest 2IMD scores( most deprived)
- Statistically significant mean reduction in HbA1 c of 8mM/mol sustained 12 months post attending YES programme with 48% of the attendees improving their HbA1 c by > 5.5mM/mol which is defined as a clinically significant reduction in HbA1c.
Young people attending YES programme had a high rate of unplanned diabetes related hospital admissions. In the 12 months following attending YES, there was a 44% reduction in Diabetic Ketoacidosis admissions.
Patient Experience and feedback continues to be integral to the development and delivery of YES. Feedback included:
‘I didn’t like YES, I loved it!’
‘It helps you empathise with your carers and appreciate how much they do for you’
‘YES helped I to see diabetes as a friend that will always be with me rather than the enemy’
‘It was not just from a clinical point of view as we could learn about other people’s real life experiences’
‘You are not alone in how you feel’
Key 3 main themes that came out from the qualitative evaluation was the emotional impact, social isolation and difficulty in adjusting to a life with diabetes that young people with diabetes struggle.
They commented on how YES has helped them:
1. social learning through shared experiences, peer support and the use of social media to sustain contact beyond the face-to-face contacts;
2. novel interactive learning exposures; including social and physical activities such as rock climbing or go-karting
3. the youth worker role, which participants described as being a supportive guide, a co-ordinator and a befriender
The patient-centered measures of programme utility and life impact were positive with all participants (n=62,100%) indicating that they would recommend the programme to someone else and 97% rated the usefulness of the programme to their daily lives as (score of 1- 5) highly relevant (5/5).
Spread
The YES programme is an excellent example of working across geographical and organisational boundaries. The programme was co-designed by young people with diabetes, parents, and health professionals. There were 3 key messages from young people when asked what they wanted from an adolescent Type 1 diabetes programme.
1 Delivery in youth friendly environments
2.Group-based interactive sessions to share experiences
3. Involve peer facilitation.
These suggestions were incorporated when the curriculum was developed and the contents of the curriculum were also informed by adolescents with Type 1 diabetes.
The programme that was developed at GSTT expanded across 12 CCG’s in South London with Treatment and Care transformation funding from the National Diabetes Team.
The programme has shared learning within its hub organisations and more widely across London. The development of YES and embedding of youth workers in the clinical service has informed strong internal business cases with quality and financial benefits which have helped transform the young person’s diabetes service at GSTT. Partners including King’s College Hospital and Evelina Children’s hospital have used the emerging evidence to business case for youth workers and train their health care professionals in delivering YES.
The YES curriculum has been well defined and manualised so that it can be replicated by other health care organisations. The YES Programme is the first Quality Institute for Self-Management Education & Training (QISMET) accredited adolescent structured education programme in the UK for type 1 diabetes that equally addresses educational and psycho- social needs. Accreditation has provided the structure for fidelity of delivery and quality assurance when rolling out the programme to other centers.
GSTT has developed a train the trainer package that is well defined and has successfully trained new educators from other hospitals in South London. This contributes to developing a multi-centre hub and spoke model supporting other centres to deliver YES for their local young adult population .There is a robust quality assurance (QA) model to ensure the standard and quality of delivery is maintained where ever YES programme is delivered.
Externally the work of the YES programme has been endorsed by the Type 1 Network, Children and Young Person’s Network and London Diabetes Transformation Board. The team are working with commissioners across London to establish a set tariff to expand YES Provision as a London wide programme and have been awarded a research grant from Diabetes UK to strengthen the evidence base of the programme.
Value
The YES programme delivers a return on investment for patients, health care professionals and the tax payer alike.
As identified in the outcomes section, the evidence demonstrate a reduction in admissions for diabetic ketoacidosis (DKA). The average cost of a DKA admission is approximately £3,500. Admission avoidance alone has saved the wider health economy £77,000 and sustaining an improvement in HbA1 c could reduce the risk of diabetes related complications. For example, preventing kidney disease and dialysis would save £20,440 per patient per year avoided/delayed. Reduction in unplanned hospital admission rates will have an impact on the quality of life of young people as it will lead to a reduction in loss of school days and work.
It is difficult to measure the financial impact of improvement in quality of life and improved confidence levels. However there is data from qualitative evaluation of YES programme that it has had a positive impact on how patients view diabetes and reduce the social stigma and isolation associated with being a young adult with diabetes.
Some of the following quotes from participants demonstrate the value of attending YES programme:
“Deep down I felt lonely because I didn’t really know anyone who had Type 1 diabetes… YES provided me the chance to meet people there around my age, who would know how I felt, it would give me a chance to make friends who I could relate my diabetes experiences with”
“It was helpful seeing other people’s perspectives and how they deal with it. Meet other people and see how they sort of cope with it.”
“It helped me to see things in a more realistic light”
Peer educator:
“YES is a great course and I have really enjoyed being a peer educator. l wish I had something similar to YES when I was a teenager.”
London’s Type 1 Network:
“The Type 1 Network works to improve the lives of people in London living with type 1 diabetes. Improving the lives of young people living with type 1 diabetes is one of the Network’s priorities. The YES programme is an exciting opportunity to truly offer young people a holistic approach to their diabetes care pathway and we continue to work with the YES team to support the spread and adoption Pan-London.”
Involvement
The programme has been co-designed with young people and parents. Young people were involved from the beginning of the programme. They decided on the structure and content of the programme. Young people decided on the name of the programme to reflect that the programme was not just about diabetes education that it was about empowering young people to self-manage and be confident. Parents were involved during the initial stages of the development of the curriculum. The focus group work on deciding how the YES programme should be delivered and content, were led by a young person with Type 1 diabetes.
The team have collaborated and shared with partners across King’s Health Partners, Evelina Children’s Hospital and other Trusts across South London. Other partners include; Health Innovation Network, London Diabetes Clinical Network, Diabetes Transformation Board, Children and Young Person’s Network and third sector through youth charities like Oasis, Red Thread and the Well-Centre which is a GP run youth Hub in Lambeth. For example, the youth work team now work across KHP in the clinical setting and spend time in others Trusts across South London to engage young people with the programme. The programme team have also trained other health care organisations across London to deliver YES programme. Furthermore the programme has worked with simulation experts to incorporate simulation based experiential learning as a modality of learning in YES which is a unique aspect of the programme and to our knowledge has not been previously used for patient education internationally.
YES is delivered by a group of multidisciplinary health care professionals that include doctors, nurses, dieticians, and podiatrists. Community retinal screening programme, general practitioners and sexual health workers deliver a session of YES programme that address general health concerns that affect young people. Therefore YES programme shows how many health care professionals across sectors collaborate in one programme for the patient benefit.
Other unique element of the programme is that some of sessions are delivered by trained peer facilitators. There is a group of trained peer educators (between ages of 20-35 who have had type 1 diabetes as teenagers) who give up their time freely to come and deliver YES sessions.
The Type 1 Network with local commissioners is driving to expand the adoption and spread of the YES programme across all of London to improve equity of access, improving clinical outcomes and quality of life for young Londoners living with Diabetes.
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