Harm reduction in severe and long-standing Anorexia Nervosa: part of the journey but not the destination-a narrative review with lived experience.

Anorexia Nervosa Eating disorders Harm reduction Severe and enduring Anorexia Nervosa Treatment

Journal

Journal of eating disorders
ISSN: 2050-2974
Titre abrégé: J Eat Disord
Pays: England
ID NLM: 101610672

Informations de publication

Date de publication:
12 Sep 2024
Historique:
received: 22 05 2024
accepted: 11 07 2024
medline: 13 9 2024
pubmed: 13 9 2024
entrez: 12 9 2024
Statut: epublish

Résumé

Questions remain about the best approaches to treatment for the subset of patients with severe and long-standing Anorexia Nervosa, commonly described in the literature as "Severe and Enduring Anorexia Nervosa." When discussing the optimal strategies and goals for treating this group, there is uncertainty over whether to focus on refining current treatment methods or exploring alternative approaches. One such alternative is "harm reduction," which has generated a wave of positive interest from patients and clinicians alike because of its emphasis on individual autonomy, personal goals and quality of life. While harm reduction can provide an attractive alternative to seemingly endless cycles of ineffective treatment, this narrative review builds on previous work to highlight the inadequate terminology and possible dangers of considering harm reduction as the endpoint of treatment. In conjunction with perspectives from a lived experience author, we consider wider contextual and ethical issues in the field of eating disorders, which should inform the role of harm-reduction approaches in this patient group. One model of treatment for patients with severe and long-standing Anorexia Nervosa is termed “harm reduction”, which moves away from traditional treatment aimed at full recovery and weight gain. This approach instead prioritises quality of life, giving patients greater control over their care. Harm reduction remains ethically controversial due to concerns about unaddressed malnutrition and issues of consent for this subset of patients. This review examines the inadequacies in how severe and long-standing Anorexia is defined, alongside exploring the ethical concerns of harm reduction with lived experience from one author.

Autres résumés

Type: plain-language-summary (eng)
One model of treatment for patients with severe and long-standing Anorexia Nervosa is termed “harm reduction”, which moves away from traditional treatment aimed at full recovery and weight gain. This approach instead prioritises quality of life, giving patients greater control over their care. Harm reduction remains ethically controversial due to concerns about unaddressed malnutrition and issues of consent for this subset of patients. This review examines the inadequacies in how severe and long-standing Anorexia is defined, alongside exploring the ethical concerns of harm reduction with lived experience from one author.

Identifiants

pubmed: 39267190
doi: 10.1186/s40337-024-01063-3
pii: 10.1186/s40337-024-01063-3
doi:

Types de publication

Journal Article Review

Langues

eng

Pagination

140

Informations de copyright

© 2024. The Author(s).

Références

Dalle Grave R. Severe and enduring anorexia nervosa: no easy solutions. Int J Eat Disorders. 2020;53:1320–1.
doi: 10.1002/eat.23295
Westmoreland P, Parks L, Lohse K, Mehler P. Severe and enduring Anorexia Nervosa and futility: a time for every purpose? Psychiatric Clin N Am. 2021;44:603–11.
doi: 10.1016/j.psc.2021.08.003
Tumba J, Smith M, Rodenbach KE. Clinical and ethical dilemmas in the involuntary treatment of Anorexia Nervosa. Harv Rev Psychiatry. 2023;31(1):14–21.
pubmed: 36608079 doi: 10.1097/HRP.0000000000000355
Atti AR, Mastellari T, Valente S, Speciani M, Panariello F, De Ronchi D. Compulsory treatments in eating disorders: a systematic review and meta-analysis. Eat Weight Disorders. 2021;26:1037–48.
doi: 10.1007/s40519-020-01031-1
Bianchi A, Stanley K, Sutandar K. The ethical defensibility of harm reduction and eating disorders. Am J Bioeth. 2021;21(7):46–56.
pubmed: 33370215 doi: 10.1080/15265161.2020.1863509
Solmi M, Monaco F, Højlund M, Monteleone AM, Trott M, Firth J, et al. Outcomes in people with eating disorders: a transdiagnostic and disorder-specific systematic review, meta-analysis and multivariable meta-regression analysis. World Psychiatry. 2024;23(1):124–38.
pubmed: 38214616 pmcid: 10785991 doi: 10.1002/wps.21182
World Health Organisation (WHO) International classification of diseases, Eleventh Revision (ICD-11). 2021
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR®). 2022.
Geppert CMA. Futility in chronic anorexia nervosa: a concept whose time has not yet come. Am J Bioeth. 2015;15(7):34–43.
pubmed: 26147264 doi: 10.1080/15265161.2015.1039720
Broomfield C, Stedal K, Touyz S, Rhodes P. Labeling and defining severe and enduring anorexia nervosa: a systematic review and critical analysis. Int J Eat Disorders. 2017;50:611–23.
doi: 10.1002/eat.22715
Reay M, Holliday J, Stewart J, Adams J. Creating a care pathway for patients with longstanding, complex eating disorders. J Eat Disord. 2022;10(1):128.
pubmed: 36038898 pmcid: 9421634 doi: 10.1186/s40337-022-00648-0
Robinson P. Severe and enduring eating disorder (SEED): Management of complex presentations of anorexia and bulimia nervosa. Hoboken: Wiley; 2009.
Wonderlich SA, Bulik CM, Schmidt U, Steiger H, Hoek HW. Severe and enduring anorexia nervosa: update and observations about the current clinical reality. Int J Eat Disord. 2020;53(8):1303–12.
pubmed: 32359125 doi: 10.1002/eat.23283
Hay P, Touyz S. Classification challenges in the field of eating disorders: can severe and enduring anorexia nervosa be better defined? J Eat Disord. 2018;6:41.
pubmed: 30555695 pmcid: 6287358 doi: 10.1186/s40337-018-0229-8
Göller S, Nickel K, Horster I, Endres D, Zeeck A, Domschke K, et al. State or trait: the neurobiology of anorexia nervosa—contributions of a functional magnetic resonance imaging study. J Eat Disord. 2022;10(1):77.
pubmed: 35641995 pmcid: 9158182 doi: 10.1186/s40337-022-00598-7
Russell J, Mulvey B, Bennett H, Donnelly B, Frig E. Harm minimization in severe and enduring anorexia nervosa. Int Rev Psychiatry. 2019;31(4):391–402.
pubmed: 31074662 doi: 10.1080/09540261.2019.1601073
Hay PJ, Touyz S, Sud R. Treatment for severe and enduring anorexia nervosa: a review. Aust N Z J Psychiatry. 2012;46(12):1136–44.
pubmed: 22696548 doi: 10.1177/0004867412450469
Williams KD, Dobney T, Geller J. Setting the eating disorder aside: an alternative model of care. Eur Eat Disord Rev. 2010;18(2):90–6.
pubmed: 20099264 doi: 10.1002/erv.989
Yager J. Managing patients with severe and enduring Anorexia Nervosa: when is enough, enough? J Nervous Mental Disease. 2020;208(4):277–82.
doi: 10.1097/NMD.0000000000001124
Touyz S, Le Grange D, Lacey H, Hay P, Smith R, Maguire S, et al. Treating severe and enduring anorexia nervosa: a randomized controlled trial. Psychol Med. 2013;43(12):2501–11.
pubmed: 23642330 doi: 10.1017/S0033291713000949
Dingemans AE, Danner UN, Donker JM, Aardoom JJ, van Meer F, Tobias K, et al. The effectiveness of cognitive remediation therapy in patients with a severe or enduring eating disorder: a randomized controlled trial. Psychother Psychosom. 2014;83(1):29–36.
pubmed: 24281361 doi: 10.1159/000355240
Janse Van Rensburg M. COVID19, the pandemic which may exemplify a need for harm-reduction approaches to eating disorders: a reflection from a person living with an eating disorder. J Eat Disord. 2020;8(1):26.
pubmed: 32509307 pmcid: 7261258 doi: 10.1186/s40337-020-00306-3
Zhu J, Hay PJ, Yang Y, Le Grange D, Lacey JH, Lujic S, et al. Specific psychological therapies versus other therapies or no treatment for severe and enduring anorexia nervosa. Cochrane Database Syst Rev 2023;8(8).
Ashton JR, Seymour H. Public health and the origins of the mersey model of harm reduction. Int J Drug Policy. 2010;21(2):94–6.
pubmed: 20163946 doi: 10.1016/j.drugpo.2010.01.004
Charlet K, Heinz A. Harm reduction-a systematic review on effects of alcohol reduction on physical and mental symptoms. Addict Biol. 2017;22(5):1119–59.
pubmed: 27353220 doi: 10.1111/adb.12414
Saunders J, Smith T. Malnutrition: causes and consequences. Clin Med (Lond). 2010;10(6):624–7.
pubmed: 21413492 doi: 10.7861/clinmedicine.10-6-624
Sachs KV, Harnke B, Mehler PS, Krantz MJ. Cardiovascular complications of anorexia nervosa: a systematic review. Int J Eat Disord. 2016;49(3):238–48.
pubmed: 26710932 doi: 10.1002/eat.22481
Giovinazzo S, Sukkar SG, Rosa GM, Zappi A, Bezante GP, Balbi M, et al. Anorexia nervosa and heart disease: a systematic review. Eat Weight Disord. 2019;24(2):199–207.
pubmed: 30173377 doi: 10.1007/s40519-018-0567-1
Jada K, Djossi SK, Khedr A, Neupane B, Proskuriakova E, Mostafa JA. The pathophysiology of Anorexia Nervosa in hypothalamic endocrine function and bone metabolism. Cureus. 2021; 13(12)
Brodrick BB, Adler-Neal AL, Palka JM, Mishra V, Aslan S, McAdams CJ. Structural brain differences in recovering and weight-recovered adult outpatient women with anorexia nervosa. J Eat Disord. 2021;9(1):108.
pubmed: 34479625 pmcid: 8414694 doi: 10.1186/s40337-021-00466-w
Walton E, Bernardoni F, Batury VL, Bahnsen K, Larivière S, Abbate-Daga G, et al. Brain structure in acutely underweight and partially weight-restored individuals with Anorexia Nervosa: a coordinated analysis by the ENIGMA eating disorders working group. Biol Psychiatry. 2022;92(9):730–8.
pubmed: 36031441 doi: 10.1016/j.biopsych.2022.04.022
Elwyn R. A lived experience response to the proposed diagnosis of terminal anorexia nervosa: learning from iatrogenic harm, ambivalence and enduring hope. J Eat Disorders. 2023;11:2.
doi: 10.1186/s40337-022-00729-0
Elzakkers IFFM, Danner UN, Grisso T, Hoek HW, van Elburg AA. Assessment of mental capacity to consent to treatment in anorexia nervosa: a comparison of clinical judgment and MacCAT-T and consequences for clinical practice. Int J Law Psychiatry. 2018;58:27–35.
pubmed: 29853010 doi: 10.1016/j.ijlp.2018.02.001
Crow SJ. Terminal anorexia nervosa cannot currently be identified. Int J Eat Disord. 2023;56(7):1329–34.
pubmed: 37057340 doi: 10.1002/eat.23957
Cummings MP, Alexander RK, Boswell RG. “Ordinary days would be extraordinary”: the lived experiences of severe and enduring anorexia nervosa. Int J Eat Disord. 2023;56(12):2273–82.
pubmed: 37732708 doi: 10.1002/eat.24058
Downs J. Care pathways for longstanding eating disorders must offer paths to recovery, not managed decline. BJPsych Bull. 2023;8:1–5.
Moseley DD. What is futility in psychiatry? AJOB Neurosci. 2024;15(1):67–9.
pubmed: 38207194 doi: 10.1080/21507740.2023.2292508
Eddy KT, Tabri N, Thomas JJ, Murray HB, Keshaviah A, Hastings E, et al. Recovery from Anorexia Nervosa and bulimia nervosa at 22-year follow-up. J Clin Psychiatry. 2017;78(2):184–9.
pubmed: 28002660 pmcid: 7883487 doi: 10.4088/JCP.15m10393
Raykos BC, Erceg-Hurn DM, McEvoy PM, Fursland A, Waller G. Severe and enduring anorexia nervosa? Illness severity and duration are unrelated to outcomes from cognitive behaviour therapy. J Consult Clin Psychol. 2018;86(8):702–9.
pubmed: 30035586 doi: 10.1037/ccp0000319
Calugi S, El Ghoch M, Dalle GR. Intensive enhanced cognitive behavioural therapy for severe and enduring anorexia nervosa: a longitudinal outcome study. Behav Res Ther. 2017;89:41–8.
pubmed: 27863331 doi: 10.1016/j.brat.2016.11.006
Ibrahim A, Ryan S, Viljoen D, Tutisani E, Gardner L, Collins L, et al. Integrated enhanced cognitive behavioural (I-CBTE) therapy significantly improves effectiveness of inpatient treatment of anorexia nervosa in real life settings. J Eat Disord. 2022;10(1):98.
pubmed: 35804403 pmcid: 9264571 doi: 10.1186/s40337-022-00620-y
Dawson L, Rhodes P, Touyz S. “Doing the impossible”: the process of recovery from chronic anorexia nervosa. Qual Health Res. 2014;24(4):494–505.
pubmed: 24594747 doi: 10.1177/1049732314524029
Watson HJ, Yilmaz Z, Thornton LM, Hübel C, Coleman JRI, Gaspar HA, et al. Genome-wide association study identifies eight risk loci and implicates metabo-psychiatric origins for anorexia nervosa. Nat Genet. 2019;51(8):1207–14.
pubmed: 31308545 pmcid: 6779477 doi: 10.1038/s41588-019-0439-2
Bulik CM, Carroll IM, Mehler P. Reframing Anorexia Nervosa as a metabo-psychiatric disorder. Trends Endocrinol Metab. 2021;32:752–61.
pubmed: 34426039 pmcid: 8717872 doi: 10.1016/j.tem.2021.07.010
Robison M, et al. “Terminal anorexia nervosa” may not be terminal: An empirical evaluation. J Psychopathol Clin Sci. 2024;133(3):285–96. https://doi.org/10.1037/abn0000912 .
doi: 10.1037/abn0000912 pubmed: 38619462 pmcid: 11062513
Robinson P, Kukucska R, Guidetti G, Leavey G. Severe and Enduring Anorexia Nervosa (SEED-AN): A Qualitative Study of Patients with 20+ Years of Anorexia Nervosa. Euro Eating Disorders Rev. 2015;23(4):318–26.
doi: 10.1002/erv.2367
Arkell J, Robinson P. A pilot case series using qualitative and quantitative methods: Biological psychological and social outcome in severe and enduring eating disorder (anorexia nervosa). Int J Eating Disorders. 2008;41(7):650–6.
doi: 10.1002/eat.20546
Daansen P, Haffmans J. Reducing symptoms in women with chronic anorexia nervosa. A pilot study on the effects of bright light therapy . Neuro Endocrinol Lett. 2010;31(3):290–6.
pubmed: 20588231

Auteurs

Edwin Birch (E)

Oxford Health NHS Foundation Trust, Oxford, OX4 4XN, UK. edwin.birch@nhs.net.

James Downs (J)

Expert by Experience and Independent Researcher, Oxford, UK.

Agnes Ayton (A)

Oxford Health NHS Foundation Trust, Oxford, OX4 4XN, UK.

Classifications MeSH