DIFFICULTIES I N CLASSIFICATION - I m - UBG Repository

Although it is generally recognized that postpubertal adolescents present with eating disorders that are largely similar to those in adults, reports of childhood eating disorders tend to suggest a heterogeneous group (e.g., Fosson, Knibbs, Bryant-Waugh, & Lask, 1987; Gowers, Crisp, Joughin,

& Bhat, 1991; Higgs, Goodyer, & Birch, 1989; Jacobs & Isaacs, 1986). This raises questions about the applicability of existing accepted diagnostic criteria for eating disorders as stated i n the fourth text revision of the Diagnostic and Statistical Manual of Mental Disorders ( 4 t h ed., text rev., D S M - I V - T R ; A m e r i c a n Psychiatric Association, 2000) or the 10th International Clas- sification of Diseases and H e a l t h Problems ( I C D - 1 0 ; W o r l d H e a l t h Organi- zation, 1992) to this population.

There remains confusion and uncertainty about the nature of childhood- onset eating disorders. First, there is a c o n t i n u u m of eating and feeding difficulties that can occur from b i r t h onward. Infant feeding problems and subsequent weaning difficulties ( w h i c h are discussed i n detail i n chapter 1) are relatively common, whereas food fads or highly selective eating patterns i n preschool-age children are also commonly observed. I n the majority of cases, these feeding and eating difficulties are not a cause for major concern, as they tend to be self-limiting, and the child's growth and development is generally unaffected (Pinhas, Steinegger, & Katzman, 2007). Developmen- t a l ^ , feeding problems may be appropriate, as they are a means of experi- mentation w i t h new tastes and textures, and also enable children to test the impact of their behavior o n their caregivers. Feeding difficulties tend to be considered "phases" that the c h i l d w i l l outgrow, and indeed, this is generally the case (Bryant-Waugh & Lask, 2007). However, eating problems i n older children should be taken more seriously, as feeding and eating problems are n o t developmentally normal i n this age group. Additionally, the child's cog- n i t i v e development is by t h e n much more sophisticated, and eating problems may be related to underlying psychological issues.

T h e second reason for the uncertainty about the nature of these disorders is that there has been much confusion and inconsistency i n the literature about the nature of eating difficulties i n children. Some believe that eating disorders (i.e., A N and bulimia nervosa [BN]) that mostly occur i n young women simply do not occur i n children. According to Haslam (1986),

" [ A N ] is really only a problem w i t h adolescents, and there is virtually no chance at all of younger children having this c o n d i t i o n " (p. 95). Similarly, it has been suggested that A N represents a maladaptive biological response to the growth changes of puberty (Crisp, 1983), w h i c h would preclude prepubertal children from having the disorder.

T h e t h i r d reason for confusion is that much of the published work o n the subject of childhood-onset eating disorders has been based o n clinical case reports, as there has been a lack of standardized instruments for the assessment of eating disorders i n this age group. These clinical case reports have described children from the age of 8 years and older (e.g., Fosson et al., 1987; Gowers et a l , 1991; Higgs et al., 1989; Jacobs & Isaacs, 1986), and, although many of the children included i n these case series have received clinical diagnoses of an eating disorder, i t has been difficult to demonstrate this o n the basis of objective, reliable assessment because the necessary tools simply have n o t

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been available. However, this situation is now improving, as more measures of eating-disorder psychopathology and symptomatology are being developed and validated for use with children and adolescents (Watkins, 2007).

The final reason for the confusion is that for those who argue that A N does occur in children, uncertainty exists over whether the symptomatology of this particular disorder in childhood differs from the symptomatology in older adolescents and adults. This debate has been fueled by the fact that children who present with restricted eating and emaciation usually received a diagnosis of A N , despite being described as a heterogeneous group, as they often do not exhibit overvalued ideas regarding weight and shape (e.g., Fosson et a l , 1987; Gowers et al., 1991; Higgs et al., 1989; Jacobs & Isaacs, 1986).

A critical question raised by these cases of early onset is the precise nature of the central psychopathology. Given that A N , and to a far lesser extent, BN, are being diagnosed in children, many of whom are prepubertal, the question arises as to whether the core disturbances in cognitions concerning body weight and shape, which are the hallmark of the eating disorders of later onset (American Psychiatric Association, 2000), are manifested by these patients.

The question of whether such overvalued ideas are present in children with eating disorders of early onset is not answered by the case series that have been reported to date. For example, Fosson et al. (1987) reported that only 56% of their patients with what they defined as early-onset A N gave a fear of fatness (a core diagnostic feature of A N ) as their main reason for refusing food. Despite the methodological limitations of these studies (none has used systematic and standardized methods of assessment), the findings are sug- gestive of distinct subgroups within these younger patient samples, and are a clear illustration of why the notion that children could have A N has been queried. This raises the question of whether these children are being clas- sified correctly. Indeed, it may be that clinicians are attempting a "best-fit"

diagnosis in the absence of a taxonomy that accomodates the heterogeneity of childhood eating disorders. Thus, clarity and consistency in classification remains elusive.

Nicholls, Chater, and Lask (2000) argued that the use of current taxonomies may not be suitable for, or applicable to, children with eating disorders, as some of the fixed criteria of these diagnostic systems would preclude a child or young adolescent being diagnosed, and thus treated, appro- priately. For example, one of the DSM-JV-TR diagnostic criteria for A N is amenorrhea, which only applies to postmenarcheal females. Although the DSM-JV-TR criteria do concede that menarche can be delayed in prepubertal females, it is impossible to know when an individual female would have started her menarche had she been of a healthy weight, and thus, this criteria seems impossible to apply. Additionally, for males, the D S M - I V - TR criteria suggest that low levels of serum testosterone should be observed in men with A N . However, this physical measure precludes a diagnosis of A N in prepubertal boys in whom one would expect to observe low levels of

serum testosterone as a matter of course. These very specific criteria can be considered to automatically exclude b o t h boys and premenarcheal girls from receiving a diagnosis of A N — i n d e e d , these criteria also exclude some women who continue to menstruate at a very low weight. A n o t h e r criterion for diagnosis i n b o t h the D S M - I V - T R and the I C D - 1 0 is weighing less t h a n 85% of expected body weight. This precludes children who were initially overweight but w h o have lost a significant amount o f weight. A n y significant weight loss during periods of expected growth, regardless of premorbid weight, and even if weight remains w i t h i n the healthy range, should be treated w i t h concern (Rome et a l , 2003). I t is important to note that although children w h o are obese may lose weight for positive health reasons during a period of expected growth because of either being o n a self-directed or medically supervised weight-loss program, any unusual and sudden significant weight loss i n these children should still be treated w i t h concern.

Thus, a more appropriate, developmentally sensitive approach to classification of childhood eating disorders may be a system of "syndrome recog- n i t i o n guidelines," w h i c h would n o t only tackle the issues presented by the lack of applicability of current taxonomies, but also attend to the heterogeneity described i n the literature. This idea was initially proposed by Fosson and colleagues i n 1987, and developed to provide a set of criteria, w h i c h have been refined over time, and are referred to as the Great O r m o n d Street

( G O S ) criteria (Bryant-Waugh & Lask, 1995, 2007; Lask & Bryant-Waugh, 1992; see discussion later i n this chapter).

T h e reliability of this system was investigated i n a case note study conducted by N i c h o l l s et al. (2000). O f the 226 children w h o had attended the eating disorders service at G O S Hospital, L o n d o n between 1992 and 1998, 81 (ages 6-16 years), were randomly selected for this study. Each child's case notes were examined by two clinicians, w h o each made their diagnoses, b l i n d to the other, according to three sets of diagnostic criteria, namely D S M - I V - T R , I C D - 1 0 , and the G O S . A l l children were given either an eating disorder diagnosis, or were rated as unclassifiable if their presentation did n o t fit the diagnostic criteria of the diagnostic systems.

Interrater agreement was only demonstrated i n 49.3% of cases using the I C D - 1 0 diagnostic criteria. Agreement between the t w o clinicians using the D S M - I V - T R criteria was reasonably h i g h at 77.8%, although this may have been aided by the l i m i t e d number of categories (i.e., A N , B N , and eating disorder n o t otherwise specified [ E D N O S ] ) . However, 51.2%

of children had been given a diagnosis of E D N O S , w h i c h suggests that a variety of pathologies may have been categorized i n this way i n the absence of alternatives. N i c h o l l s et al. (2000) noted that disorders n o t included i n classification systems may lead to t h e m going unrecognized w h i c h , poten- tially, could have serious consequences. T h e greatest interrater agreement was found using the G O S criteria, w i t h 8 5 % of children receiving the same diagnosis from b o t h clinicians. This was n o t suprising, as the G O S criteria

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have been specifically developed to reflect the heterogeneous presentation of childhood eating disorders. However, this finding suggests that these criteria provide a more reliable alternative to the diagnostic systems currently available.

W i t h the advent of an adapted version of the Eating Disorder Exam- ination (EDE; Fairburn & Cooper, 1993) for use with children (ChEDE;

Bryant-Waugh, Cooper, Taylor, & Lask, 1996), and the availability of GOS criteria for more reliable clinical diagnosis, this issue of whether A N of early and later onset is comparable, and whether A N can be clearly differentiated from other childhood eating disorders, has been addressed (Cooper, Watkins, Bryant-Waugh, & Lask, 2002). Cooper and et al. found that the ChEDE pro- files of the early-onset children were strikingly similar to those of participants with a later onset A N , suggesting that early-onset A N is of the same phe- nomenological form as that seen in adolesence and adulthood. Additionally, the study found that the ChEDE reliably discriminated between those who had received a clinical diagnosis of A N and those who had received a diagnosis of another childhood-onset eating disorder, reinforcing the suggestion that, as a whole, those with childhood eating disorders do indeed constitute a heterogeneous group, while lending support for the use of a more appropriate diagnostic system in this population.

The GOS criteria for eating disorders (see Exhibit 2.1) coupled with descriptions of childhood-onset eating disorders are presented here.

ANOREXIA NERVOSA

Although A N in children has been shown to be strikingly similar to that in older adolescents and adults (Cooper et al., 2002), there are some fundamental developmental differences. For example, children with A N often fail to maintain hydration (Irwin, 1981), and, as noted earlier, any weight loss, regardless of premorbid weight, during periods of expected growth should be treated with concern, even if the child remains within the healthy weight range (Rome et al., 2003).

There is little consistency in the literature to date with regard to termi- nology used to describe the onset of A N in children and adolescents under the age of 18 years. Some studies deem "early onset" to simply mean an onset under the age of 18 years (e.g., Eisler et al., 1997), whereas others describe those with an early onset to be aged 14 years or under (e.g., Matsumoto et al., 2001). Other studies attend to the pubertal status of the young person when applying the terms early onset or late onset (e.g., Cooper et al., 2002). Russell (1985) noted that it is wise to consider the onset of A N as early or late in terms of pubertal development rather than age, as the age at which a child goes through puberty varies from child to child, and puberty is a complex process that spans 2 to 3 years (Tanner, 1962).

Exhibit 2.1

Great Ormond Street Criteria for Rating Disorders Anorexia nervosa

• Determined weight loss (e.g., through food avoidance, self-induced vomiting, excessive exercising, abuse of laxatives)

• Abnormal cognitions regarding weight and/or shape

• Morbid preoccupation with weight and/or shape, food and/or eating Bulimia nervosa

• Recurrent binges and purges and/or food restriction

• Sense of lack of control

• Abnormal cognitions regarding weight and/or shape Food avoidance emotional disorder

• Food avoidance

• Weight loss

• Mood disturbance

• No abnormal cognitions regarding weight and/or shape

• No preoccupations regarding weight and/or shape

• No organic brain disease, psychosis, illicit drug use, or prescribed drug-related side-effects

Selective eating

• Narrow range of foods (for at least 2 years)

• Unwillingness to try new foods

• No abnormal cognitions regarding weight and/or shape

• No morbid preoccupations regarding weight and/or shape

• Weight may be low, normal, or high Functional dysphagia

• Food avoidance

• Fear of swallowing, choking, or vomiting

• No abnormal cognitions regarding weight and/or shape

• No morbid preoccupations with weight and/or shape Pervasive refusal syndrome

• Profound refusal to eat, drink, walk, talk, or self-care

• Determined resistance to efforts to help

There have been no epidemiological studies that focus on early-onset A N . In adolescence, the prevalence rate of A N is estimated at 0.1% to 0.2%

(Ben-Tovim & Morton, 1989; Whitaker et al., 1990), but this is almost cer- tainly lower in children (Bryant-Waugh & Lask, 1995). A large-scale study of the incidence of A N in both children and adolescents, which screened the entire population of school-age children in Goteberg, Sweden, found an accumulated prevalence for A N (those who had or had had the disorder) of 0.84% (Rastam, Gillberg, & Garton, 1989). Although there is no firm evidence that there has been an increase in the incidence of early-onset childhood A N since the early 1960s, there appears to be more presentations to specialist clinics (Bryant-Waugh & Lask, 1995). However, this could be explained by a heightening awareness of the disorder over the years and better accessibility to services.

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There is also the question of whether the severity of early-onset A N is similar to that seen in later onset, and findings are mixed. For example, one study addressing this question reported lower levels of purging behavior in those with an early onset of A N , and also reported that these patients were less likely to be extremely emaciated when compared with those patients with a later onset (Matsumoto et aL, 2001). However, studies that used standardized assessment methods found similar severity levels in those with early-onset A N and those with later onset (Arnow, Sanders, & Steiner, 1999; Cooper e t a l , 2002).

Studies of A N in adults and adolescents have consistently shown that 90% to 95% of patients are female (Garfinkel & Garner, 1982). The picture is less clear in children and young adolescents. Swift (1982) reported similar sex ratios in childhood-onset A N to the adult and adolescent studies, finding an overall sex ratio of girls to boys of 9.5:1. However, some studies report as many as 19% to 30% are boys, although, as mentioned earlier, these samples were reporting children and young adolescents who may not have had weight and shape concerns (e.g., Fosson et at, 1987; Hawley, 1985; Higgs et aL, 1989; Jacobs & Isaacs, 1986).

It has been noted clinically (Bryant-Waugh & Lask, 2007) that boys with A N tend to want to become more muscular, rather than lose weight and are more concerned about being "flabby" than fat. Although, like girls, they restrict their eating and often exercise excessively, they report concerns about being unhealthy rather than being unattractive were they to gain weight.

BULIMIA NERVOSA

BN is very rare in premenarcheal children, but when it does occur, it presents in a similar manner to that seen in adolescents and adults. It is characterized by episodes of overeating in which the sufferer experiences a loss of control, usually followed by compensatory behaviors such as self- induced vomiting, laxative abuse, excessive exercising, and periods of fasting or severe food restriction, which are intended to avoid weight gain. The weight and shape concerns characteristic of A N are also core features of BN. Individuals with BN often have very low self-esteem and may engage in deliberate self-harming behaviors, such as cutting (e.g., Ruuska, Kaltiala- Heino, Rantanen, & Koivisto, 2005).

Although rare, Bryant-Waugh and Lask (1995) reported that 10% of their referrals to a child and adolescent eating disorder specialist comprised of cases of BN with an onset younger than age 14. Cooper et al. (2002) reported Ave cases of premenarcheal BN, in a consecutive series of 88 children diagnosed with an eating disorder, whereas Bryant-Waugh and Lask (2007)

reported a 7-year-old child who received a clinical diagnosis of BN. Many women with BN often report that their disorder started in early adolescence, and only present for treatment after having BN for a number of years, suggesting that it can remain "hidden" for many years. Although BN has been reported in men (e.g., Mitchell & Goff, 1984), there have been virtually no reports of this disorder in boys.

ATYPICAL CHILDHOOD-ONSET EATING DISORDERS None of the "atypical" childhood-onset eating disorders have been well studied and their clinical features and nosological status are uncertain, although weight and shape concerns are not usually a feature of these disorders. What is known about these conditions is that there is dysfunctional behavior around food, although the fundamental psychological disturbance is unclear. Using DSM-1V-TR criteria, children with atypical eating disorders would usually receive a diagnosis of EDNOS. The advantage of using the GOS criteria is that they allow for more homogeneous categories, and thus better targeted treatment strategies (Rosen, 2003).

Food Avoidance Emotional Disorder

Food avoidance emotional disorder (FAED) was originally thought to be a primary emotional disorder where food avoidance was a prominent feature (Higgs et al., 1989). More recently, a study investigating comorbidity in early-onset eating disorders found that only 15% of children with FAED fulfilled diagnostic criteria for a noneating, emotional disorder (Watkins, Cooper, & Lask, 2003), suggesting that although there is some mood disturbance present, it is unlikely to constitute a primary affective disorder.

Children with FAED present with symptoms similar to those seen in A N , in that they are usually significantly underweight and are restricting their food intake. However, they do not have the same preoccupation with weight and shape, nor do they have the distorted views of their own body that are characteristic of A N . Higgs et al. (1989) suggested that FAED may be an inter- mediate condition between A N and childhood emotional disorder (with no eating disorder); a partial syndrome of A N with an overall more favorable prognosis. However, this assertion has yet to be tested empirically.

There are no reports of the incidence, prevalence, or sex ratio of FAED.

However, Cooper et al. (2002) reported that this was the most common diagnosis after A N in a consecutive series of 88 children presenting with childhood-onset eating disorders at two specialist clinics. Approximately 29% received a diagnosis of FAED. The ratio of girls to boys in this FAED group was 4:1.

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Selective Eating

Children who are selective eaters have typically consumed a very narrow range of foods for at least 2 years and are unwilling to try new foods.

They do not have a distorted body image nor the preoccupation with weight or shape characteristic of A N and BN. Growth and development in selective eaters does not appear to be affected by their eating habits, and they do not have a fear of choking or vomiting (Nicholls, Christie, Randall, & Lask, 2001). It has been suggested that selective eating may be a variant of normal eating behavior, a stereotyped behavior in a developmental disorder, or an emotional (phobic) disorder (Nicholls et al., 2001).

Again, there are no reports of the incidence, prevalence, or sex ratio of selective eating in the general population. However, Nicholls et al. (2001) and Cooper et al. (2002) found a sex ratio of boys to girls of around 4:1 in recent studies, suggesting that boys are far more likely to present with selective eating than girls.

Functional Dysphagia

The characteristic feature of functional dysphagia is a fear of swallowing, vomiting, or choking, for which there is usually an easily identifiable precipitant, such as having choked on a piece of food; having had traumatic gastrointestinal investigations; or experience of abuse that becomes asso- ciated with particular textures, tastes, or types of food (Bryant-Waugh &

Lask, 2007). This makes the child anxious about, and resistant to, eating normally, resulting in a marked avoidance of food. These children do not have the characteristic weight and shape concerns seen in children with A N or BN. There has been very little reported about this disorder, and its incidence is unknown. Indeed, in a consecutive series of 88 children with childhood-onset eating disorders (Cooper et al., 2002), only 1 child received a diagnosis of functional dysphagia.

Pervasive Refusal Syndrome

Pervasive refusal syndrome (PRS) was first suggested by Lask, Britten, Kroll, Magagna, and Tranter (1991). They described a small case series of children who displayed a profound and pervasive refusal to eat, drink, walk, talk, or care for themselves in any way over a period of several months.

These children usually present as underweight and often are dehydrated, but it is unclear whether they have distorted cognitions regarding weight and shape, as they are unwilling to communicate. A n additional and striking feature is their determined resistance to any form of help. Lask et al. (1991) suggested that the condition may be understood as an extreme form of post-

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