This is a longitudinal cohort study, involving all patients with eating disorders admitted from the HOPE PC geographical footprint, which covers a total population of 3.5 million. Routine data collection included age, demographics, diagnosis, BMI on admission and discharge and long-term outcomes. This provided an opportunity for comparison between different models of inpatient treatment and type of aftercare (see Flow diagram).
Inclusion criteria: all patients with an ICD-11 diagnosis of anorexia nervosa and related disorders who were admitted to a specialist inpatient unit following a referral to the HOPE PC single point of access between 2018- and December 2020, and patients who were offered I-CBTE since the establishment of the Oxford model in 2017.
Exclusion criteria: patients older than 60 years of age.
Categorical outcomes at minimum 1 year after discharge from hospital was used as the primary measure;
- Good outcome: the patient is at normal weight (BMI>19.5) and no binge purging (either discharged from outpatient services or completing treatment).
- Poor outcome: patient remains <19.5 and/or binge purging (regardless of whether still open to specialist services or discharged to primary care)
- Readmission.
- Deceased.
Secondary outcomes were BMI on admission and discharge, and length of stay.
Ethics: The study was approved by Oxford Health Foundation Trust Audit department as a service evaluation study. As only routinely collected data were used, there was no requirement for individual patient consent. All data were kept on a secure server.
Statistics
We analysed the data with SPSS 22, using descriptive statistics, Chi-squire test for categorical variables, Independent T-test and ANOVA for continuous variables, and linear regression for identifying main predictors of outcomes.
Settings
The HOPE Provider Collaborative
The HOPE PC was established in July 2018. It includes NHS organisations covering five neighbouring counties in England, and the independent Priory Group for additional inpatient provision. The total population of the geographical footprint is 3.5 million. The main goal of the network was to bring together several organisations providing specialist inpatient and community services for adults with eating disorders. The PC introduced a joined up approach to admissions across the geographical footprint by establishing a single point of access for referrals [29]. Referrals and outcomes have been systematically monitored since July 2018 for the whole geographical area.
Treatment options
Treatment as usual: current inpatient practices in England
International guidelines vary regarding the optimal inpatient treatment models [3, 8] owing to the limited evidence base. Current UK inpatient treatment programmes broadly follow the NHSE Standard Contract for Specialised Eating Disorder services and the NICE guidelines [2, 30]. These programmes include an eclectic combination of multidisciplinary interventions, including expert re-feeding with medical monitoring, psychoeducation, and a range of psychological interventions, such as motivational enhancement therapy, CBT, cognitive analytic therapy, inter-personal therapy, focal psychodynamic, and family interventions focused on the eating disorder, as well as occupational therapy, social skills programmes, and recreational activities. The potential weakness of these programmes is that there is often a risk of giving conflicting messages to the patient. For example, if the medical and nursing team focus on weight restoration, while the psychologist delivers non-directive therapy at the same time, this would cause direct conflict between different therapeutic models [28]. This is unhelpful in a patient population with a high level of ambivalence towards treatment and recovery. This may explain why disengagement and self-discharge are common – as much 60% in some studies [31]
NHSE contract recommends three types of admissions:
- Urgent/unplanned admissions with ‘modest weight restoration’
- Symptom recovery admissions: weight restoration to normal weight and improved eating behaviours and psychological understanding
- Planned short term admission for ‘medical stabilisation’ or symptom interruption
It is important to note that the NHSE contract is based on expert opinion rather than robust evidence and that it is interpreted differently by different providers. The multiple recommended psychological interventions were developed independently in outpatient settings and have never been tested in combination in inpatient settings. The content of TAU differs across inpatient units and even across time within the same unit. So, it should not be entirely surprising that despite the implementation of the national contract, outcomes of inpatient treatment remain poor; and the number of people requiring hospitalisation with eating disorders has been increasing, often due to readmissions.[32] Furthermore, the outcomes of the three recommended types of admission have never been evaluated.
‘Medical stabilisation’ admissions
Short admissions (planned or unplanned) are usually labelled as ‘medical stabilisation’ both in the UK and elsewhere. However, interpretation of what ‘medical stabilisation’ means in this context varies widely. For example, patients presenting to A&E departments with life threatening electrolyte imbalances may be temporarily ‘stabilised’ by intravenous replacement, but unless the eating disorder is treated, the crisis will rapidly recur. Commonly, patients with severe and enduring anorexia are admitted for a time-limited ‘medical stabilisation admission’ of a few weeks (e.g. to improve the BMI from 12 to 14, without any individual psychological treatment). The effectiveness of these practices has never been formally evaluated [33]. While they can help to keep the patient alive and reduce the cost of prolonged hospitalisation, whether this approach inadvertently contributes to the maintenance of the illness is uncertain: the term ‘medical stabilisation’ gives the impression to the patient and carers that prolonged extreme malnutrition can be ‘stable’, when in fact it guarantees a gradual decline of their physical and mental health.
‘Symptom recovery’ admissions
‘Symptom recovery’ admission is usually offered to the ‘motivated’ patient to achieve weight restoration ‘to normal weight or weight at which [the patient] can reliably continue independent weight restoration/ weight maintenance with less intensive input’, and a ‘resolution or marked improvement in eating disorder behaviours’. The reference to the ‘motivated’ patient implies that motivation to change is inherent to the individual, rather than the task of an effective treatment. Normalisation of weight can take a long time for an extremely malnourished patient, particularly if the weight restoration is slow (NICE guidelines recommend 0.5-1kg/week). If the person needs to gain 10 to 20 kg in weight to reach a minimum healthy BMI, then admission can take between 6-10 months.
Transition and care coordination
Although most guidelines recommend clear care planning in preparation for admission and for discharge [2, 34], there is limited guidance as to the details of how this should be implemented. Most patients find unplanned admissions and interruptions in therapy as well as changes in therapeutic models traumatic, especially at a time when the risk of relapse is the highest.
The Oxford Model
To address these challenges, the ‘Oxford model’ was developed in 2017, adapting a whole system treatment approach across the care pathway using CBTE. Over the last 15 years, Ricardo Dalle Grave’s team in Italy, in collaboration with Christopher Fairburn in Oxford, has adapted CBTE, which was originally developed as one-to-one individual therapy [35], to a new, whole-team, stepped care treatment programme for people with severe eating disorders requiring intensive treatment [28, 36, 37]. The novelty of this programme is the clear theoretical underpinning of treatment, and continuity of evidence based psychological treatment throughout the inpatient, day patient and community pathways, in contrast with the traditional model enshrined in the NHSE contract.
The CBT-E treatment fosters therapeutic optimism, and has four main goals:
- To engage patients in the treatment and involve them actively in the process of change;
- To remove the eating disorder psychopathology, i.e. dietary restraint and restriction (and low weight), extreme weight-control behaviours, and preoccupation with shape, weight and eating;
- To correct the mechanisms maintaining the eating disorder psychopathology;
- To ensure lasting change.
Dalle Grave has published two manuals [28, 36] and several papers to describe the method and reported good outcomes in different patient populations [38-40]. For full details, we refer to the published literature. Briefly: the CBT-E intensive treatment programme is time limited to 13 weeks inpatient treatment, followed up by 7 weeks day treatment for stabilisation of normal weight and ongoing individual CBTE treatment afterwards lasting for 40 weeks in total, (in line with the length of treatment recommended by NICE).[2]
Given the differences between the health care systems and legal frameworks of the UK and Italy, we had to adjust the programme for the NHS. The Garda unit in Italy is a private hospital that only admits patients who, after preparation, consent to the full programme, while NHS services are required to admit patients who consent only to partial weight restoration or who require compulsory admission and treatment.
As a result, we introduced two pathways:
- I-CBTE: full weight restoration with time limited admission (12-13 weeks) and 7 weeks stepped down day treatment, followed by outpatient CBTE replicating the Garda model.
- ‘Crisis management’ admission for those patients who do not consent to I-CBTE, but are not detainable. This was due to having to comply with NHSE contract that includes planned short-term admissions.
Detained patients were encouraged to choose full weight restoration and were offered the whole programme.
The following changes were introduced in Oxford as part of transforming the service from a treatment as usual service to an intensive CBTE treatment programme.
Preparation for admission
Preparation for admission is fundamental for successful inpatient treatment, even for the physically compromised patient [28]. This is because a high level of ambivalence and fear towards change and recovery is inherent in anorexia nervosa. Furthermore, the control of diet and weight and shape is central to the psychopathology, and unless the patient is fully prepared for the treatment, premature discharge is a high risk. Ideally, patients should start psychological treatment before admission, or – if this is not available – have a clinician, who can provide continuity between inpatient and outpatient treatment.
We introduced a multidisciplinary/multiagency admission planning meeting for all patients regardless of severity or legal status. The purpose of this meeting is to help the person consider treatment options, benefits and risks related to both options and to encourage them to overcome their eating disorder. This approach aims to empower the patient: encouraging a sense of control at a time when feelings of loss of control are common and act as a barrier to accepting care; and fostering a sense of autonomy as well as therapeutic alliance, collaboration and developing trust with the inpatient team. The multidisciplinary team introduces the treatment programme on the unit and helps the patient to make an informed decision from the two time-limited options. The treatment team always strongly encourages the patient to sign up for the full I-CBTE programme, explaining that research shows that recovery rates are much better than with crisis admission or TAU. In our experience, patients and carers value this evidence-based information, and it helps them make informed decisions, even if they are highly ambivalent about the admission. Typically, the discharge date can be agreed before admission. This helps all parties to remain focussed on admission goals and to plan for continuity of treatment after discharge. The patient and the carers have an opportunity to visit the unit and receive written information to help familiarise themselves with the treatment available. This is essential for managing anxiety and to start therapeutic engagement. Dalle Grave recommends several sessions for this engagement; however, due to resource limitations, we have only been able to offer one meeting for most patients. Feedback has been positive, although some clearly require more than one session to sign up for full treatment, and we are planning to address this in the next steps of service development.
Since the pandemic, these meetings have been remote. The technology allowed the inclusion of multiple stakeholders, including the family, community teams, and GP/other agencies.
‘Crisis management’ admission
In Oxford, we introduced the term ‘crisis management’ for planned short admissions with partial weight restoration. This was to prevent inadvertently reinforcing the psychopathology, and misleading patients and carers, who often interpret ‘medical stabilisation’ literally. If someone is discharged when still malnourished, they may be over an immediate crisis, but are not stable, as chronic malnutrition is progressively harmful. The length of stay is usually from 6 to 8 weeks, the goal being to help the patient reach a BMI of minimum 15, or 6-8kg of weight gain and symptom interruption. Calculating and offering a discharge date at the admission planning meeting reduces anxiety and provides a sense of control, and intensive aftercare is recommended to continue with progress.
Weight restoration
We also reviewed the weight restoration programme. This required a culture change among staff across the care pathway and consistent messages to patients and carers. The rate of expected weight gain in the UK is 0.5-1 kg per week in a hospital setting, and this is followed by most inpatient services. Prior to the introduction of I-CBTE, we also followed this practice and used very sensitive medical grade scales on the unit, which recorded minuscule changes in weight. However, this inadvertently reinforced the patient’s preoccupation with minor details. We changed to 0.5 kg scale accuracy and faster weight restoration (1-1.5 kg/week), as recommended by Dalle Grave [28]. Both of these changes were well received when the rationale was explained, and they improved the rate of weight restoration and length of stay. Collaborative weighing and interpretation of the weight graphs are an important part of CBTE. It is essential that the patient understands the need for weight restoration: malnutrition is one of the principal maintaining factors of anorexia nervosa [35]. While it may take time, most patients recognise that reversal of malnutrition is a necessary step towards recovery. The dietetic team was crucial in implementing these changes, helping to manage the patients’ distress in the dining room using quality improvement methodology [41].
Psychological treatment
We developed a rolling 20-week multidisciplinary group programme following CBTE principles and offered individual formulation for all patients. The individualised CBTE formulation for every patient considers all maintaining factors (e.g., physical and mental health co-morbidities, other social care factors, such as housing, education/employment) and guides the role of each team member as to how best to support the patient. All members of the team work in a co-ordinated and collaborative approach with the patient to address their individual maintaining factors through the setting of weekly goals and the ongoing development of new skills and strategies.
Prior to the pandemic, we were able to deliver a 7 week day-programme and individual psychological treatment for patients on the I-CBTE pathway after discharge. People on the crisis management pathway received supportive management after discharge in their respective community teams.
The impact of the pandemic on the implementation of I-CBTE
Unfortunately, since the onset of the pandemic, most day services have closed or have had to run with reduced capacity due to infection control and staffing challenges and patients have been unable to access ongoing individual psychological therapy after discharge but have been placed on lengthy waiting lists for therapy owing to resource limitations.
Despite these challenges, the inpatient team maintained the key multidisciplinary components of CBTE, as described above, including a detailed I-CBTE formulation. This situation has created a natural experiment to compare the standalone inpatient CBTE with the I-CBTE integrated stepped care model, and we included this group in our analysis.