By Anthea Fursland, PhD FAED
This is an important and serious topic – for patients, families, clinicians and researchers. I think it is so critical because of the following:
- Eating disorders (EDs) are debilitating illnesses, robbing people of a full life, and affecting their families and loved ones.
- Having a chronic ED is more likely if the person was not diagnosed or treated early enough, or not treated appropriately.
- It’s too easy to lose hope and give up on people whose cognitions are so entrenched after years of having both a starved brain and a complex mental disorder. Caring for them and treating them takes endurance!
- Most people with chronic EDs will likely not recover with time-limited evidence-based treatment alone, and we need to be creative and responsive.
However important, this topic is fraught with disagreements and confusion. I will highlight some of the complexities, but I would like to reiterate that all clinicians working in the field of longstanding EDs, whatever their views, are working towards the same end: to help people and their families live lives that are less affected by the ED.
In the following discussion I will focus mainly on severe and enduring anorexia nervosa (SEAN) because most research and writing covering this topic is on AN. However, I recognise that all EDs, if not recognised and treated appropriately, can become longstanding. I will use this term, “severe and enduring”, although there are several other labels that are used, such as chronic, longstanding, enduring, severe.
How do we define “SEAN”? Hay and Touyz (2018) identified three components:
- A persistent state of dietary restriction, underweight, and overvaluation of weight/shape with functional impairment.
- Duration of >3 years of AN.
- Exposure to at least two evidence-based treatments appropriately delivered together with a diagnostic assessment and formulation that incorporates an assessment of the person’s eating disorder health literacy and stage of change.
But what about a 17 year-old with a 4 year history of AN, who has received well-delivered FBT and CBT-E and is still in the throes of her disorder? Do we label her as having “SEAN” and if so, do we give up on the goal of full recovery for her?
When should we label AN as SEAN – or should we at all? Clinicians disagree and various suggestions have been made: at least 3 years, at least 7 years, at least 10 years…or maybe never.
We know that many patients with longstanding EDs appear to be not ready to change. But we also know that chronic malnutrition leads to neuroprogression and reduced neuroplasticity in the brain, which makes new learning and cognitive changes more challenging (Kan & Treasure, 2019). This is why clinicians need to get creative. The rationale for using the SEAN label is to provide appropriate care for those whose ED has persisted, and to tailor this treatment if appropriate. However, “One of the challenges in tailoring treatment for individuals with SE-AN is that treatments that focus on both physical and psychological recovery run the risk of misalignment with patient aims and readiness for recovery, resulting in high drop-out” (Wonderlich et al., 2012).
Unfortunately, there is no evidence for early identification of those who go on to develop SEAN. All we know is that common features in SEAN are: driven exercise; lower BMI, maturity fears, older age at hospital admission; failure to respond to early tx; adverse early life. (Kaplan & Strober, 2018)
Recovering from SEAN
Recent qualitative research involving people recovered from AN suggests that recovery from SEAN involves four phases: a) Being unable/unready to change; b) Experiencing a tipping point where motivation increases and changes; c) Active pursuit of recovery; d) Reflection & rehabilitation (Dawson, Rhodes & Touyz, 2014)
The one randomized control study on SEAN (Touyz et al., 2013) show that people can make substantial improvements in quality of life when weight regain is not the main goal. But is this what we should be aiming for?
Now for the good news!
- Wentz et al. (2007) followed up those with teenage onset, 18 years later and found that 88% had fully recovered although many had psychiatric co-morbidities.
- Patients with or without SE-AN did not differ significantly on treatment outcomes following inpatient CBT-E. (Calugi et al, 2017).
- The Massachusetts General Hospital followed up women with AN and bulimia nervosa (BN) over 25 years. After 10 years, 68% of those with BN had recovered, compared with only 31% of those with AN. However, after 25 years, the recovery rate for BN had remained the same, whereas the recovery rate for those with AN was now 63%. So recovery after 10 years is indeed possible. The authors conclude: “the majority will recover from AN and BN over time. Yet 2 decades of illness represents considerably meaningful life lost, and our findings emphasize the importance of developing interventions to reduce the duration of illness. Our findings that recovery remains possible even after long-term illness argue for active treatment rather than palliative care for most patients.” (Eddy et al., 2017).
- At CCI in Australia, we looked at all patients who had been referred for AN and treated with CBT-E. We found only two associations between AN duration/severity and outcome, both at odds with assumptions about SEAN:
- Lower pre-treatment BMI was associated with greater improvement in BMI.
- Those who had their disorder shortest or longest were more likely to remain in treatment.
We concluded that there is no meaningful cluster of symptoms that constitutes SEAN. Therefore the treatment approach should be the same, regardless of illness duration or severity: we shouldn’t be removing critical components of evidence-based treatments (e.g., focus on renourishment, self-monitoring etc.). People with an eating disorder of >10 years did just as well in treatment (where weight normalization was a central goal) as those with a shorter duration. “These findings offer hope for individuals affected by AN and are a timely reminder to clinicians to administer evidence-supported treatments such as CBT-E, regardless of duration or severity of illness.” (Raykos et al., 2018)
We must not give up hope. While some EDs remit quickly, others may take years to remit. Families have every right to demand evidence-based treatments for their loved ones, whatever the length and severity of their disorder. Meanwhile clinicians and researchers, together with those affected by EDs (clients and families) need to continue searching for better treatments (e.g., Murray et al., 2019; Kan & Treasure, 2019).
Calugi, S., El Ghoch, M., & Dalle Grave, R. (2017). Intensive enhanced cog-
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Dawson L., Rhodes P. & Touyz, S. (2014) “Doing the Impossible”: The Process of Recovery From Chronic Anorexia Nervosa. Qualitative Health Research, Vol. 24(4) 494–505
Eddy, K. T., Tabri, N., Thomas, J. J., Murray, H. B., Keshaviah, A., Hastings, E., … Franko, D. L. (2017). Recovery from anorexia nervosa and bulimia nervosa at 22-year follow-up. The Journal of Clinical Psychiatry, 78(2), 184–189. https://doi.org/10.4088/JCP.15m10393
Hay, P., Touyz, S., & Sud, R. (2012). Treatment for severe and enduring anorexia nervosa: A review. The Australian and New Zealand Journal of Psychiatry, 46(12), 1136–1144. https://doi.org/10.1177/0004867412450469
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Kaplan, A. S. & Strober, M., 2018 Severe and enduring anorexia nervosa: Can risk of persisting illness be identified, and prevented, in young patients? International Journal of Eating Disorders, DOI: 10.1002/eat.23019
Murray S.B., Quintana D.S., Loeb K.L., Griffiths S., Le Grange D. (2019) Treatment outcomes for anorexia nervosa: a systematic review and meta-analysis of randomized controlled trials. Psychol Med. 2019 Mar; 49(4):701-704. doi: 10.1017/S0033291718003185.
Raykos, B. C., Erceg-Hurn, D. M., McEvoy, P. M., Fursland, A., & Waller, G. (2018). Severe and enduring anorexia nervosa? Illness severity and duration are unrelated to outcomes from cognitive behaviour therapy. Journal of Consulting and Clinical Psychology, 86(8), 702–709. https:// doi.org/10.1037/ccp0000319
Touyz, S., Le Grange, D., Lacey, H., Hay, P., Smith, R., Maguire, S., … Crosby, R. D. (2013). Treating severe and enduring anorexia nervosa: A randomized controlled trial. Psychological Medicine, 43(12), 2501–2511. https://doi.org/10.1017/s0033291713000949
Wentz E, Mellström D, Gillberg IC, et al. (2007) Brief report: Decreased bone mineral density as a long-term complication of teenage-onset anorexia nervosa. European Eating Disorders Review 15: 290–295.