ED Transitions Module 1
Setting the Scene - Definitions and Context

Watch the video below to hear what young people have to say about their experiences of service transitions.

The 5 D’s of Poor Service Transitions:

Transition is the planned movement of adolescents and emerging adults with chronic physical or mental health conditions from child-centred to adult-centred health care systems (Blum et al., 1993).

Blum et al.'s definition was designed for (and applicable to) young people with conditions that start at birth or in childhood, and potentially require life-long ongoing treatment and support.

Examples include: cystic fibrosis, T1 diabetes or neurodevelopmental disorders.

For these types of conditions, some general features tend to be relevant:

• Preparation can occur over a very long period of time.
• Transition allows young people to make a fresh start with a different team, develop greater autonomy around management of their chronic conditions and their lives in general.

However, the typical transition scenario in relation to eating disorders (EDs) is quite different.

Issues, opportunities and challenges

In the UK, most ED services are separated into CAEDS and AEDS, with service transitions at age 18, coinciding with the age of majority.

• Importantly, the median age of onset of EDs is also at age 18 (Solmi et al., 2022).
• This means that many young people may be in their first treatment episode when they reach CAEDS-AEDS transition age.
• A further issue is that a move from home to University (or other independent living) often occurs between age 18 and 19, potentially necessitating a further service transition.

Additional service transitions, unrelated to age, may also occur. Common examples include transitions from ED services to general mental health services, from inpatient services to outpatient services and vice versa, and to a new service in a different geographic area.

Implication: There is a lot of potential for the 5Ds to ‘kick in’ here.

Emerging adulthood, age 18-25, is increasingly recognised as a unique developmental period (Potterton et al., 2021a), with many societal factors also adding potential stresses and pressures.

The period is characterised by a strong drive for autonomy and for the first time combined with the means (legal, financial and practical) for exerting this.

However, 18 year olds will vary enormously in their capacity to steer their own ED care.

Thus, we cannot expect them to have the motivation, knowledge and skills needed to negotiate the NHS by themselves, especially as AEDS often are not resourced to accept self-referrals.

Research has shown that emerging adults in general and those with EDs specifically find help-seeking very hard (Potterton et al., 2021 b).

This has implications for service transitions, as the natural inclination of these young people may be ‘not to bother’ with another service.

The answer depends on which perspective you take:

Reflection:

• Where does your own service fit in?
• How do you think these different service models compare in terms of acceptability and risks for patients and families?

A recent study assessed priorities of clinicians (CAEDS and AEDS), young people and parents with regards to better manage transitions (Wales et al., 2022).

All three groups highlighted:

• The importance of a gradual transition with continuity of care.
• The need to acknowledge that parents/carers want to be involved.
• The need for solid handover information plus a fresh assessment by the AED service.
• The option of delaying the transition if indicated.

Patients and Carers:

• Wanted more flexible, patient‐centred arrangements where BMI was not a determining factor for whether patients should receive further care.

Clinicians:

• Valued clear structures (e.g. fixed transition at age 18 years, with body mass index (BMI) as a determining factor, and low‐weight patients being prioritised for post‐transition AEDS care).
  

Much has been made of the different culture and approaches between CAEDS (more family-focused) and AEDS (more autonomy/responsibility focused). To some extent, these may reflect differences in developmental, systemic and legal responsibilities.

For example, NICE guidelines recommend family-interventions as the main treatment for young people below age 18 and individual treatments for those age 18 and over.

However these differences are increasingly becoming blurred.

In line with these findings, a recent systematic review on the topic of age-related transitions highlighted that:

• there are more similarities than differences between CAEDS and AEDS
  
• there should be greater integration between these services

Watch the video below to hear Professor Tracey Wade discuss the findings from her review and their implications.

• Some service models minimise the need for age-related transitions. However, if transitions do occur:
• Poorly conducted age-related service transitions can be disastrous
• Patient and carers want to see flexible, patient-centred, well-planned transition arrangements
• The next modules will focus on how this can be achieved