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Avoiding deaths in hospital from anorexia nervosa: the MARSIPAN project

  • Paul Robinson (a1)
Summary

The MARSIPAN (MAnagement of Really SIck Patients with Anorexia Nervosa) project was established in response to reports of patients admitted to medical wards and proving refractory to treatment, sometimes dying on the ward. Psychiatrists, physicians and other clinicians in nutrition and eating disorders were brought together to discuss key issues in the assessment and management of such patients. The resulting guidance report, which applies to adult patients over 18, addresses: assessment of risk, where to treat the patient, specialist support for medical teams, key elements of treatment, namely (a) safe refeeding to avoid refeeding syndrome and underfeeding syndrome, (b) management of problematic behaviours, (c) support for the family, and (d) transfer to a specialist eating disorder unit when appropriate and possible.

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Copyright
This is an Open Access article, distributed under the terms of the Creative Commons Attribution (CC-BY) license (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
Corresponding author
Paul Robinson (paul.robinson@beh-mht.nhs.uk)
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Declaration of interest

None.

Footnotes
References
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1 Harris, EC, Barraclough, B. Excess mortality of mental disorder. Br J Psychiatry 1998; 173: 1153.
2 Steinhausen, HC. The outcome of anorexia nervosa in the 20th century. Am J Psychiatry 2002; 159: 1284–93.
3 Rosling, AM, Sparén, P, Norring, C, von Knorring, AL. Mortality of eating disorders: a follow-up study of treatment in a specialist unit 1974–2000. Int J Eat Disord 2011; 44: 304–10.
4 Muir, A, Palmer, RL. An audit of a British sample of death certificates in which anorexia nervosa is listed as a cause of death. Int J Eat Disord 2004; 36: 356–60.
5 Royal College of Psychiatrists, Royal College of Physicians. MARSIPAN: Management of Really Sick Patients with Anorexia Nervosa (College Report CR162). Royal College of Psychiatrists, 2010.
6 Sikora, K. Catena Di Mauro – the tragic face of anorexia. New South Wales Daily Telegraph 2009, 11 February.
7 BBC News. Care changes after anorexia death. 6 October 2009 (http://news.bbc.co.uk/1/hi/england/norfolk/8293441.stm).
8 Aubert, F. Les médecins ont tué ma fille en l'endormant. [The doctors killed my daughter by sending her to sleep.] 20 Minutes Online, 17 January 2011 (http://www.20min.ch/ro/entertainment/people/story/21742693).
9 Scottish Parliament. Case 200400447: Lothian NHS Board. Scottish Parliament, 2006 (http://www.spso.org.uk/webfm_send/114).
10 National Institute for Health and Clinical Excellence. Nutrition Support in Adults (Clinical Guidelines CG32). NICE, 2006.
11 Mehler, PS, Winkelman, AB, Andersen, DM, Gaudiani, JL. Nutritional rehabilitation: practical guidelines for refeeding the anorectic patient. J Nutr Metab 2010; doi: 10.1155/2010/625782.
12 National Institute for Health and Clinical Excellence. Eating Disorders: Core Interventions in the Treatment and Management of Anorexia Nervosa, Bulimia Nervosa and Related Eating Disorders (Clinical Guideline CG9). NICE, 2004.
13 Junior MARSIPAN Group. Junior MARSIPAN: Management of Really Sick Patients under 18 with Anorexia Nervosa (College Report CR168). Royal College of Psychiatrists, 2011.
14 Emborg, C. Mortality and cause of death in eating disorders in Denmark 1970–1993: a case register study. Int J Eat Disord 1999; 25: 243–51.
15 Button, EJ, Chadalavada, B, Palmer, RL. Mortality and predictors of death in a cohort of patients presenting to an eating disorders service. Int J Eat Disord 2010; 43: 387–92.
16 Cohen, SI. Hostile interaction in a general hospital ward leading to disturbed behaviour and bulimia in anorexia nervosa: its successful management. Postgrad Med J 1978; 54: 361–3.
17 Fleming, J, Szmukler, GI. Attitudes of medical professionals towards patients with eating disorders. Aust N Z J Psychiatry 1992; 26: 436–43.
18 King, SJ, de Sales, T. Caring for adolescent females with anorexia nervosa: registered nurses' perspective. J Adv Nurs 2000; 32: 139–47.
19 George, L. The psychological characteristics of patients suffering from anorexia nervosa and the nurse's role in creating a therapeutic relationship. J Adv Nurs 1997; 26: 899908.
20 Intercollegiate Group on Nuntrition. Undergraduate Nutrition Educational Curriculum Overview. ICGN, 2010 (http://www.icgnutrition.org.uk/forum/messages/725/725.html).
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Avoiding deaths in hospital from anorexia nervosa: the MARSIPAN project

  • Paul Robinson (a1)
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eLetters

Re:Eating disorder in children and adolescents - risky business?

Robert M Wrate, psychiatrist
12 September 2012

I fully agree with the authors that a careful definition of context is all important. So it was disappointing that they took my comment on being reassured out of the context in which it was placed ; every death ofa teenage is a tragedy. To observe that the observed annual death rate foranorexia nervosa is around tenth of that cited for the paediatric conditions they cite, and far less than the rate of death by suicide in young schizophrenic patients, is not to be relaxed about risk in anorexia nervosa, nor to imply that specialised treatment for anorexia nervosa is not required.

In my earlier response to Robinson's article I did not sufficiently well position my own observation about medical complications, which would have been better phrased as "the only common complication of clinical significance". Morbidity, which I was seeking to distinguish from the biological response to starvation, sometimes goes beyond bone mineralisation problems, and often does when chronicity becomes established. However, unlike Wentz et al's prospective outcome study (1), which reported no deaths over an 18yr follow-up period, the study of brainstructure and function cited (2) was not based on a community-sample. Their findings were derived from a cohort of acutely-ill hospitalised adolescents, and were most evident in those who remained at low weight in their 20's.

I am grateful to learn about the Junior MARSIPAN report, and hope that most readers recognised that I was situating my response to Robinson's article from a community-perspective, including how 'risk' may be constructed by those responding to newly presenting anorexic patients.

1. Wentz E, Gillberg C, Anckarsater et al. Adolescent-onset anorexia nervosa : 18 year outcome. British Journal of Psychiatry 2009 ; 194 : 168-174 2. Chui HT, Christensen BK, Zipursky RB et al. Cognitive function and brain structure in females witrh a history of adolescentonset anorexia nervosa. Paediatrics 2008 Aug; 122 (2) e426-2437.

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Conflict of interest: None declared

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Eating disorder in children and adolescents - risky business?

Lee D Hudson, Paediatrician
11 September 2012

We read with interest Dr. Wrate's response to Dr. Robinson's article and although we agree that a context to risk is important, we cannot concur with his view of the context. As health care professionals caring for young people with eating disorders, we do not regard 7 deaths in children and adolescents as reassuring. When put into the context of more "traditional" paediatric illnesses, 1.5 deaths per year are not far removed from 12 deaths from diabetic-ketoacidosis(1) and 14 deaths from invasive childhood meningococcal disease (HPA data). Even within the 18 years since Dr. Wrate's search, there has been a continuing reduction of vaccine-preventable diseases, improvement in neonatal outcomes and survival from childhood malignancies, resulting in a shift in childhood illnesses from communicable to non-communicable diseases, including eatingdisorders.

Death is a preventable outcome of eating disorders and may be secondary to lack of awareness, knowledge or timely treatment; yet it would seem that paediatric medical and mental health services are sometimes ill-equipped to meet the challenges of young patients presentingwith eating disorders, especially acutely. 50% of children less than 13-years old are hospitalized early in their illness(2) and numbers of children under 14 hospitalized for eating disorders has risen over the past 10 years(HES data). A recent survey of on-call paediatric registrars in hospitals in England and Wales revealed poor knowledge of the acute management of children with eating disorders(submitted for publication). Most were unaware of the frequent cardiovascular complications and unable to outline the complications of re-feeding syndrome.

We agree with Dr.Wrate that there has been too much emphasis historically on hospitalization rather than focus on good quality outpatient treatments and early intervention; however, we believe that it is important not to negate risk in order to redress this balance. The decision to admit is a complex one; unfortunately, it is our observation that admission to hospital is often more dependent on available services and experience of health professionals than clinical need.

We also wish to comment on Dr.Wrate's commentary on morbidity in eating disorders in childhood, which he describes as relating only to bonemineral density. Not wanting to understate the significance of potentiallyirreversible low bone density as a medical complication, we must highlightthe multi-system effects of eating disorders and associated malnutrition in this group. Other unique medical complications found in children with eating disorders include an impact upon growth and development and changesin brain structure and function.(3,4) Such complications are treatable if recognized early and treated aggressively.

To date, there are too few data on the outcomes of children with eating disorders for us to relax about risk. In preparing the Junior MARSIPAN report, instances of deaths were rare. Nonetheless, the cases described in the report show this is risky business indeed and examples were not hard to come by. The risk assessment framework in the Junior MARSIPAN report acknowledges the complexity of risk assessment, and is stratified to avoid overstatement. Valuable lessons learned from improvements in survival from preventable childhood diseases such as meningococcal disease include the importance of early recognition, awareness, and training.(5) In the absence of consistency, we argue that erring on the side of caution is prudent and The MARSIPAN guidelines are important safeguards to help clinicians understand, recognize and treat eating disorders.

1. Edge JA, Ford-Adams ME, Dunger DB. Causes of death in children with insulin dependent diabetes 1990-96. Archives of Disease in Childhood 1999;81(4):318-23.

2. Nicholls DE, Lynn R, Viner RM. Childhood eating disorders: Britishnational surveillance study. The British Journal of Psychiatry 2011;198(4):295-301.

3. Hudson LD, Court AJ. What paediatricians should know about eating disorders in children and young people. J Paediatr Child Health 2012;Mar 7. doi: 10.1111/j.1440-1754.2012.02433.x. (Epub ahead of print)

4. Chui HT, Christensen BK, Zipursky RB, Richards BA, Hanratty MK, Kabani NJ, et al. Cognitive function and brain structure in females with ahistory of adolescent-onset anorexia nervosa. Pediatrics 2008 Aug;122(2):e426-37.

5. Booy R, Habibi P, Nadel S, De Munter C, Britto J, Morrison A, et al. Reduction in case fatality rate from meningococcal disease associated with improved healthcare delivery. Archives of Disease in Childhood 2001;85(5):386-90.

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Conflict of interest: Dr Hudson and Dr Nicholls contributed as authors to Junior MARSIPAN; Dr Nicholls is currently president of the Academy for Eating Disorders.

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Death and risk in adolescent anorexia nervosa

Robert M Wrate, Psychiatrist
27 April 2012

Responding to Robinson's recent article on avoiding hospital deaths from anorexia nervosa [1], the most helpful context to consider this in relation to teenage patients is to place it within a broader concern aboutrisk. Robinson states that a "very unwell" patient should be admitted, butcrucially the definition of that is still not sufficiently clear. How risk is perceived, including what is severely disabling as well as what may be "life-threatening", is a key issue.

Using death certificate data provided by the Office for National Statistics (ONS) around eighteen years ago, I observed 112 certified deaths in England and Wales over a five year period ; however, only seven of these had been below their 18th birthday. Notwithstanding the uncertainty of death certificate methodology[2], in this instance suggested by the observation that a third of the 112deaths had occurred after their 65th birthday, these seven deaths approximate to only around 1 in 5,000 anorexic adolescents - an important finding to set in context fears about these young patients.

That death-data enquiry had been to establish a better empirical understanding about risk following our team's decision (which I supported)to recommend the de-commissioning of a psychiatric inpatient unit that hadoften provided long-term treatment for anorexic teenagers. It had previously participated in the UK's first prospective multi-centre study of adolescent psychiatric admissions [3], which demonstrated disappointingtreatment-effects for those with anorexia nervosa [4]. But without such a facility, might there be a local increased risk of fatal outcomes for thiscondition ? Reassured that the probability of death was unlikely to be significantly increased by closing the unit, a substantial change in practice was possible, relocating therapeutic skills to enhance outpatienttreatment capacity. Gower et al's subsequent treatment study [5] confirmedour view that without hospitalisation the disorder should not usually be regarded as hard to treat, untreatable or life-threatening.

Declining death rates observed for anorexia nervosa over the last twodecades have been attributed to its more effective and earlier introduced treatment, but not necessarily because it was hospital-based [6]. A careful review of the literature provides two lessons less prone to grab media headlines than premature deaths. First, in adolescence at least chronicity rather than death is by far the more likely adverse outcome of failing to effectively treat the condition. In comparison with adults, where medical complications are not uncommon and excess mortality rates observed compared to the normal population, the only significant medical complication (as opposed to biological adaptation to starvation) during adolescence is progressive loss of bone mineralisation [7].

Yet published studies on adolescent admission imply that hospitalisation was most often considered essential to avoid a youngster'spossible death, not to divert them from a pathway into chronicity. The COSI-CAPS multi-centre study of adolescent psychiatric hospitalisation isparticularly instructive in throwing light upon how risk in these patientsis constructed [8]. Anorexia nervosa was the single most frequent diagnosis at admission (108/403 patients); only a sixth of whom were detained but two thirds nevertheless considered at risk to themselves. Thecohort was disproportionally white, female, aged 15-17, living at home with an over-representation of single parents. The BMI of all anorexic patients on admission was within the ICD-10 diagnostic threshold (of 16, for adults), but most were not far below the threshold (14.8 [sd 1.8, n=108], with a 95%CI of 14.3 to 15.4). Since the normal range of BMI for adolescents aged 15-17 is also less than for adults, it seemed that a relatively low threshold for admission was occurring.

This study had usefully included a number of independently provided units, accounting for a third of their non-eating disorder cases. Such youngsters were significantly less likely to have been receiving any treatment prior to admission (p<0.001), emphasising the part community-concerns play in hastening hospitalisation. In short, the second lesson taught me that risk often seems to have been 'socially constructed' ratherthan medically evidenced, a concept developed by Mary Douglas, the distinguished anthropologist who died last year. This concept has also been important for the support I provide to clinical practice in remote & rural communities*.

Robinson posed questions for further research, including : i. how to manage severely physically ill patients who resist nutritional treatment, and ii. the best model of cooperative care between medical and specialist psychiatric services. In my experience, any request for medical care of these patients must be very carefully defined, usually circumscribed to stabilising metabolic problems. NG refeeding is not required for that, however self-evident the case might seem for rapidly improving poor nutritional state (it does not directly stabilise a patient's illness and might instead produce other medical problems, as I have observed and Robinson has indicated, as well as to adversely affect the therapeutic alliance).

Addressing his question on "how to manage severely physically ill patients who resist nutritional treatment", my experience suggests that itis important to distinguish between what is being 'resisted' : normalisingmetabolism, restoration of metabolic rate in particular (since this directly affects cognition, mood, and exercise intolerance), or the additional caloric requirement to improve absolute weight gain or BMI, which frighten these patients. Teenagers develop anorexic nervosa in response to otherwise unaddressed, perhaps previously unrecognised, psychological distress (problems that might have first resulted in compensatory over-eating and excessive weight gain). So nutritional treatment addressing metabolic rate, and thus general well-being, is a farmore readily agreed first treatment goal between the patient and their professional carer. Securing collaborative care is an unarguable vital step toward eventual recovery.

1. Robinson P. Avoiding deaths in hospital from anorexia nervosa : the MARSIPAN project. The Psychiatrist, 2012; 36 : 109-1122. Gowers SG, Clark A, Roberts C et al. Clinical effectiveness of treatments for anorexia nervosa : randomised controlled trial. Brit J Psychiat 2007; 191: 427-435.3. Wrate RM, Rothery DJ, McCabe, Aspin J, and Bryce G. A prospective studyof admissions to adolescent inpatient units. Journal of Adolescence, 1994 : 17 : 221-237.4. Rothery DJ, Wrate RM, McCabe, Aspin J, and Bryce G. Treatment goal-planning : outcome findings of a British prospective multi-centre study ofadolescent inpatient units. European Child and Adolescent Psychiatry , 1995 : 4 : 209-221.5. Muir A and Palmer RL. An audit of a British sample of death certificates in which anorexia nervosa is listed as a cause of death. Int J Eat Disord 2004: 36 : 356-60.6. Reas DL, Kjelsas E, Heggestad T et al. Characteristics of anorexia nervosa-related deaths in Norway (1992-2000); data from the National Patients Register and Causes of Death register. Int J Eat Disord 2005; 37: 181-1877 . Katzman DK. Medical complications in adolescents with anorexia nervosa: a review of the literature. Int J Eat Disord 2005: 37 : 52-598. Tulloch P, Lelliott P, Bannister D, et al. The Costs, Outcomes, and Satisfaction for Inpatient Child and Adolescent Psychiatric Services (COSI-CAPS) study. NCCSDO, May 2008.

Dr RM Wrate MDBS DPM FRCPsych Edinburgh (* Shetland Islands 2005-2012) Correspondence : robertwrate123@btinternet.com

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Conflict of interest: None declared

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