ED Transitions Module 1: Setting the Scene – Definitions and Context

This module is part of the Eating Disorders Transitions Learning Series.

Please note that to avoid lengthy descriptions we will talk about CAEDS (Child and Adolescent ED services) and AEDS (Adult ED services), although we are aware that some such transitions may involve generic CAMHS.

In a hurry? Click the links below to jump to each of the different sections of this module:

Why do service transitions matter?

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

The 5 D’s of Poor Age-Related Service Transitions:

For more information about the potential pitfalls of poorly-managed transitions, you can read the Averil Hart Report. This Parlimentary and Health Service Ombudsman report details the case of a 19-year-old with anorexia nervosa who died after a number of NHS organisations failed to provide adequate care and support as she began her first year at university.

Some of the key themes in the report include:

• Failures to properly plan, coordinate and assess Averil's care needs during her transition between services;
• Failures to support inexperienced clinicians managing Averil's transition;
• Failures in joint working arrangements leading to serious signs of deterioration being missed;
• Poor communication with Averil's family throughout the final months of her care and after her untimely death.

Meera's story: a typical case

Age-related 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, far from having a chronic ED, 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.

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

Developmental considerations in service transitions: emerging adults

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.

How common are transitions between CAEDS and AEDS and what is the diagnostic mix? 

The answer depends on which perspective you take:

Why this difference?

Typically in a given area AEDS are larger than CAEDS, therefore transition patients make up a smaller proportion of their referrals.

Other Potential Contributors to the Referral Gap

• CAEDS patients may decide they don’t want to start with a new team, even though they still have problems. This can lead to them being discharged whilst still unwell.
• Some patients, who are initially referred to CAEDS when close to the transition age-boundary, are not seen there and are re-routed to AEDS. These patients are not counted in transition statistics, and instead will have a delayed start to their care.

What is the Diagnostic Mix of Transition Patients Referred to an AEDS Team (Belli et al., in prep):

• 43% are within 3 years of onset (also making them eligible for treatment under the FREED model).
• Over two thirds (69.5%) have AN, atypical AN or ARFID.
• Taken together, the presence of a referral gap and the high proportion of AN diagnoses amongst those referred for transition suggests that patients with bulimic disorders may be more likely to be "lost" in the system.

How do different service models fare in terms of age-related service transitions?

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?
  
  

[Video] Interview with Sheryllin Mcneil about age integrated services (10mins)

What do patients, families and clinicians want?

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).

Similarities and differences between CAEDS/AEDS in ethos and treatments

Much has been made of the different ethos between CAEDS (more family-focused) and AEDS (more autonomy/responsibility focused).

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.

Hover over the cards below to see examples.

Bulimia Nervosa further reading: Schmidt et al., 2007; Anorexia Nervosa further reading: Eisler et al., 2016; Nyman-Carlsson et al., 2020; Dalle Grave and Calugi, 2020; Le Grange et al., 2020; Wittek et al., 2023

Bridging the gap between services

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.

This module is part of the Eating Disorders Transitions Learning Series.