Severe and Enduring Eating Disorders (SEED)

By Mollie Schlapp-Gilgoff, LMSW
Reviewed by Amy Baker Dennis, PhD, FAED

What are Severe and Enduring Eating Disorders (SEED)?

Severe and enduring eating disorders (SEED) is not a formal eating disorder diagnosis, however it has gained increasing attention since the term was first used in the 1980’s to describe the most serious and long-lasting eating disorders.¹ Unfortunately, there is limited research on the topic and currently there is no universally accepted definition for SEED. However, the most common criteria used in defining it is the duration of the illness and the number of unsuccessful treatment attempts.² The duration at which an eating disorder is categorized as severe and enduring varies across the literature, ranging from 3 to 10 years, with the majority of studies using 7 years or more to classify patients as having SEED.³ Additionally, what is considered unsuccessful treatment varies across studies, with some researchers arguing that patients must have unsuccessfully attempted different types of treatment (i.e. evidenced-based eating disorder treatment, any type of eating disorder treatment, or any psychiatric treatment etc.) and others proposing different numbers of unsuccessful treatment attempts to define SEED.^4,5

Other definitions of SEED include criteria for severity, with some characterizing severe as impairment in all areas of life (i.e. medical, cognitive, occupational and social functioning) while others define severity as impairment in one or more of these areas of functioning but not all of them.⁴ In addition to a lack of consensus about the criteria for SEED, another challenge in defining SEED is the age at which a person is first diagnosed with an eating disorder. For example, the projected treatment course for someone in their 20’s who has had anorexia nervosa for 10 years is very different from someone in their 40’s who has had anorexia nervosa for 10 years and it may not be appropriate to label both patients as having a severe and enduring eating disorder given the difference in their ages.⁴

How Common are Severe and Enduring Eating Disorders (SEED)?

For many people with eating disorders the illness is long lasting, with approximately 20% of people with anorexia nervosa and 10% of people with bulimia nervosa developing a long-standing illness which endures for many years.³ While this highlights that eating disorders may be long lasting for some, research also shows that it is possible for people to fully or partially recover from an eating disorder even after it has lasted for 10-20 years with rates of recovery increasing as time goes on.^3,6 These studies show there is hope for recovery even after an eating disorder endures for many years. However, it is also important to note individuals with SEED, specifically severe and enduring anorexia nervosa (SE-AN), have the highest mortality rate of any mental illness and develop more severe eating disorders symptoms, have more hospitalizations, and lower levels of social well-being or quality of life than individuals who recover from their eating disorders in a shorter period of time.^4,7 Given the serious and life threatening nature of SEED it is critically important that further research is done and a consensus reached in defining SEED so that effective treatment can be developed for this population.⁶

How are Severe and Enduring Eating Disorders (SEED) Treated?

Due to a lack of research, there are no existing evidenced-based treatments for severe and enduring eating disorders (SEED) and treatment approaches have largely been based on clinical wisdom or experience.⁸ However, there have been a small number of studies looking at different types of treatments which show some positive results for patients with SEED. Whereas eating disorder treatment typically begin with attempting to stabilize the person nutritionally, some researchers have proposed it could be more effective to focus on improving their quality of life (i.e., social, occupational functioning etc.) instead of the primary goal being the reduction in eating disorder symptoms or full recovery for patients with SEED.³ Such researchers argue that this approach would help avoid overwhelming patients, increasing their resistance during treatment or treatment dropout.³ For example, Specialist Supportive Clinical Management (SSCM) and Cognitive Behavioral Therapy (CBT), both of which were modified to focus on improving quality of life and harm reduction, showed some positive outcomes in reducing eating disorder symptoms and improving quality of life, motivation to change, and co-occurring mood disorder symptoms for those with SEED.⁹

Though some researchers believe that treatment for SEED should tailor treatment goals to each patient’s individual needs instead of only focusing on reducing eating disorder symptoms, researchers caution that such approaches must also address the health consequences of the illness and ensure the medical stability of patients.⁴Other researchers have questioned treatments which solely focus on improving quality of life, citing studies showing that traditional evidenced-based treatment for eating disorders can lead to a reduction in eating disorder symptoms even in patients who have had an eating disorder for many years and unsuccessfully attempted treatment in the past.¹⁰ While there remains limited research and much debate among researchers and clinicians about how to treat patients with SEED, there is consensus that patients with SEED should be treated by a multidisciplinary team of eating disorder specialists ideally comprised of a mental health professional who coordinates care with a physician, and if necessary, a dietician and psychiatrist.⁴

Sources

^[1] Kiely, L., Hay, P., Robinson, P. (2023). Severe and Enduring Eating Disorders (SEED). In: Robinson, P., Wade, T., Herpertz-Dahlmann, B., Fernandez-Aranda, F., Treasure, J., Wonderlich, S. (eds) Eating Disorders. Springer, Cham. https://doi.org/10.1007/978-3-030-97416-9_104-1

^[2] Broomfield, C., Stedal, K., Touyz, S., & Rhodes, P. (2017). Labeling and defining severe and enduring anorexia nervosa: A systematic review and critical analysis. International Journal of Eating Disorders, 50(6), 611–623.https://doi-org.i.ezproxy.nypl.org/10.1002/eat.22715v

^[3] Kotilahti, E., West, M., Isomaa, R., Karhunen, L., Rocks, T., & Ruusunen, A. (2020). Treatment interventions for Severe and Enduring Eating Disorders: Systematic review. The International journal of eating disorders, 53(8), 1280–1302. https://onlinelibrary.wiley.com/doi/full/10.1002/eat.23322

^[4]Touyz, S., Le Grange, D., Lacey, H., & Hay, P. (Eds.). (2016). Managing Severe and Enduring Anorexia Nervosa: A Clinician’s Guide (1st ed.). Routledge. https://doi.org/10.4324/9781315772349

^[5] Wonderlich, S. A., Bulik, C. M., Schmidt, U., Steiger, H., & Hoek, H. W. (2020). Severe and enduring anorexia nervosa: Update and observations about the current clinical reality. International Journal of Eating Disorders, 53(8), 1303–1312. https://doi-org.i.ezproxy.nypl.org/10.1002/eat.23283

^[6] Eddy, K. T., Tabri, N., Thomas, J. J., Murray, H. B., Keshaviah, A., Hastings, E., Edkins, K., Krishna, M., Herzog, D. B., Keel, P. K., & 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

^[7]Wildes, J. E., Forbush, K. T., Hagan, K. E., Marcus, M. D., Attia, E., Gianini, L. M., & Wu, W. (2017). Characterizing severe and enduring anorexia nervosa: An empirical approach. International Journal of Eating Disorders, 50(4), 389–397. https://doi-org.i.ezproxy.nypl.org/10.1002/eat.22651

^[8]Zhu, J., Yang, Y., Touyz, S., Park, R., & Hay, P. (2020). Psychological Treatments for People With Severe and Enduring Anorexia Nervosa: A Mini Review. Frontiers in psychiatry, 11, 206. https://www.frontiersin.org/articles/10.3389/fpsyt.2020.00206/full

^[9] Ålgars, M., Oshukova, S., & Suokas, J. (2023). A novel outpatient treatment model for patients with severe and enduring anorexia nervosa: an observational study of patient characteristics, treatment goals, and treatment course. Journal of eating disorders, 11(1), 150. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10481592/

^[10] Reay, M., Holliday, J., Stewart, J., & Adams, J. (2022). Creating a care pathway for patients with longstanding, complex eating disorders. Journal of eating disorders, 10(1), 128. https://doi.org/10.1186/s40337-022-00648-0

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