There is clear evidence that there are effective treatments for some eating disorders (e.g. Reference Fairburn and HarrisonFairburn & Harrison, 2003; National Institute for Health and Clinical Excellence, 2004). In order to maximise the uptake of such evidence-based treatments, specialist eating disorder services need to ensure that the patient progresses across the course of care (referral, assessment, treatment, discharge). Considerable resources are deployed to this end. However, such services are costly, and efficiency of resource deployment is key. Efficiency is substantially impaired where time is spent working with people who do not reach the end of the treatment. Such attrition is already recognised in the forms of drop-out and failure to engage (e.g. Reference Coker, Vize, Wade and CooperCoker et al, 1993; Reference MahonMahon, 2000). However, other factors cause referrals to deviate from the typical course of care (e.g. inappropriate referral by clinicians; failure by patients to enter the care pathway). This study of specialist eating disorder services examines the journey from referral to treatment termination, with the aim of identifying potential areas for improvement in clinical and administrative practice to rectify these difficulties.

Method

The study was carried out in two highly specialised adult eating disorder services in south London (local catchment area population about 2.7 million; tertiary care provision for a further population of about 3.8 million). Each service has a patient-centred model of care offering a range of therapeutic interventions, in line with clinical guidelines (National Institute for Health and Clinical Excellence, 2004). Patients were accepted from the age of 18 years upwards. Treatment duration for in-patients and day patients was determined individually, and transitions were arranged according to individual clinical criteria (e.g. weight stability and ability to travel for day-patient work). For most people treated as out-patients, the treatment guideline was about 20 sessions for cases of bulimia and about 40 sessions for anorexia.

Over the two calendar years of the study (2002-3), a total of 1887 referrals were made to the two services (87.1% from the services’ catchment areas, 12.9% from outside those areas). All information was gathered from local case registration systems and case-notes, rather than from centralised electronic systems. Preliminary analyses revealed no difference in referral outcomes between local and non-local patients, so the two groups were considered as a whole. In some cases more than one referral was made for the same patient over time; each was treated as a separate data point. Treatment end-points were grouped according to the following broad categories (Fig. 1):

1. • referrals not resulting in the patient being seen (e.g. lacking key information; referrer lacking referral rights owing to being outside the relevant geographical area; patient declining assessment);

2. • patient assessed, but no further input (e.g. person did not have an eating disorder or declined treatment; referred to another service);

3. • treatment offered and accepted (e.g. failed to engage when treatment began; dropped out during treatment; completed treatment);

4. • plan for activity that had not had the opportunity to be put in place or to reach an end-point (e.g. on waiting list for assessment or treatment at audit point).

Fig. 1. Summary of outcomes of referrals. Grey boxes indicate areas where services could aim to improve (e.g. inappropriate referral; patient lost prematurely).

There were also a small number of cases in which the person had died or for which the treatment file was not available at the assessment point.

Results

Figure 1 shows the number and proportion of referrals that resulted in each of the main end-points. By the end of the audit, 634 individuals had not reached a care end-point, being still on the assessment (n=114) or treatment (n=165), waiting lists or still in treatment (n=355). The 279 cases on waiting lists were excluded in calculating percentages reaching specific end-points in the care pathway, as their outcome could not be known. A further 25 sets of notes (1.3% of the original 1887 referrals) were not available at the assessment point (usually owing to the individual having declined assessment and the notes having been returned to the relevant medical records department, where they were missing in the system of filing). These cases were also excluded from the analyses because it was not possible to verify the outcomes. The analyses were carried out on the remaining 1583 cases (or relevant subsets of that group).

Discussion

This study has shown considerable problems in the pathways for patients referred to specialist eating disorder services. There was substantial attrition throughout the referral-assessment-treatment-discharge pathway. Only two-thirds of referrals resulted in an assessment. Of these, only three-quarters entered treatment. Finally, only half of those who entered treatment completed it. In simple terms, for every 100 referrals approximately 65 will be assessed, 49 will enter treatment and 25 will remain in treatment until the appropriate end-point (although it will be important to consider the actual dose of treatment received by those who drop out). Other studies show high rates of drop-out and failure to engage (e.g. Reference Coker, Vize, Wade and CooperCoker et al, 1993; Reference MahonMahon, 2000), but have not taken the whole patient journey into account. The generalisability of these findings to other specialist and general psychiatric services remains to be established.

There is a need for changes in administrative and clinical practice in order to enhance efficiency of care. At an administrative level, clearer guidelines are needed for referrers regarding valid referrals (who has referral rights; what patients are suitable; what information is needed). Where there is a relatively transient population, such as that in London, many referrals are invalidated by patients moving home (into a new catchment area). This requirement might be reconsidered, to reduce patients needing multiple referrals that fail to result in an assessment or treatment.

Once a valid referral has been made, there are several ways in which clinical practice could be changed in order to enhance retention at the points where patients are commonly lost to services (Fig. 1). First, direct telephone contact with patients to negotiate potential initial appointment dates and times is likely to be more effective than sending appointment letters in ensuring attendance for assessment. Second, patients often find it valuable to have information provided in written form (e.g. National Institute for Health and Clinical Excellence guidelines, information sheets about the clinic and the eating disorders) so that they can review it before and after the assessment. Third, once the patient has attended for assessment, motivational techniques (e.g. Reference GellerGeller, 2002) can enhance the likelihood that the patient will prioritise her or his own recovery. Such techniques include motivational interviewing, comprehensive validation, the development of lists of short- and long-term ‘pros’ and ‘cons’ of the eating disorder, and considering how the eating disorder has blocked the development of the patient's personal values (e.g. the desire to be in a relationship or to be an effective parent) (e.g. Reference LinehanLinehan, 1993; Reference Waller, Cordery and CorstorphineWaller et al, 2007). Such motivational enhancement is not a stage in the treatment of the eating disorder, but is necessary throughout the treatment episode. Increasing the focus on motivation reduces drop-out from psychological therapy for many patients with an eating disorder (Reference FairburnFairburn, 2008). Fourth, where appropriate, it can be valuable to engage carers in the patient's assessment and treatment (e.g. Reference Treasure, Smith and CraneTreasure et al, 2007), in order to provide the patient with the opportunity to access support between meetings with clinicians. Finally, once treatment has started, patients are more likely to be motivated to remain in treatment if they can see its benefits. Therefore, it is critical that clinicians should use the best available treatments for eating disorders (Reference Fairburn and HarrisonFairburn & Harrison, 2003; National Institute for Health and Clinical Excellence, 2004), monitor outcomes with the patient, and stress the positive prognostic value of making early behavioural changes (e.g. Reference Agras, Crow, Halmi, Mitchell, Wilson and KraemerAgras et al, 2000).

Declaration of interest

None.