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Anorexia Nervosa Articulo 1
Anorexia Nervosa Articulo 1
Anorexia Nervosa Articulo 1
6
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Gaudiani et al. (2022) presented terminal anorexia nervosa (T-AN) as a potential new specifier to the
anorexia nervosa (AN) diagnosis, with criteria including (a) AN diagnosis, (b) age . 30 years, (c)
previously participated in high-quality care, and (d) the clear, consistent determination by a patient with
decision-making capacity that additional treatment would be futile, knowing death will result. This study’s
purpose was to empirically examine a subgroup of participants with AN who met the first three criteria of
T-AN—and a smaller subset who also met a proxy index of the fourth criterion involving death (TD-AN)—
and compare them to an adult “not terminal” anorexia nervosa (NT-AN) group and to a “not terminal” subset
30 years of age or older (NTO-AN). Patients at U.S. eating disorder treatment facilities (N = 782; T-AN: n =
51, TD-AN: n = 16, NT-AN: n = 731, NTO-AN: n = 133), all of whom met criteria for a current Diagnostic
and Statistical Manual of Mental Disorders, 5th Edition diagnosis of AN, were compared regarding admis-
sion, discharge, and changes from admission to discharge on physiological indices (i.e., white blood cell
counts, albumin levels, aspartate aminotransferase levels, and body mass index), as well as self-report
measures (i.e., eating disorder, depression, anxiety, and obsessive-compulsive symptoms). In contrast to
the tight syndromal symptom interconnections of, and inevitable spiral toward death expected for, a terminal
diagnosis, results suggest substantial variability within the T-AN group and TD-AN subset, and an overall
trend of improvement across physiological and self-report measures. This study thus provides some
empirical evidence against the specification of the T-AN diagnosis.
285
286 ROBISON ET AL.
Anorexia nervosa (AN) is a severe psychiatric disorder character- To the best of our knowledge, six papers thus far have already been
ized by significant restriction of food intake leading to objectively published in response, raising several concerns with this newly dis-
low body weight, fear of weight gain, and body image disturbance cussed construct of T-AN. First, the ability to define “terminal” in
(American Psychiatric Association [APA], 2013). AN has the high- the context of AN was raised as a potential problem (Crow et al.,
est mortality rate of any psychiatric illness other than opiate use dis- 2023; Guarda et al., 2022; Riddle et al., 2022). Second, Riddle et
order; outcomes tend to be suboptimal (Birmingham et al., 2005; al. (2022) and Guarda et al. (2022) suggest that some individuals
Harbottle et al., 2008), with more than half of individuals failing with T-AN, as defined by Gaudiani et al. (2022), may have a treatable
to achieve remission after treatment (Watson & Bulik, 2013). illness. Third, others discussed the potential dangers of a terminal
Even the best evidence-based treatments for AN may confer little label for AN, particularly given its implications regarding hopeless-
advantage over comparator treatments in the long term (Murray ness, and for a terminal label becoming something that individuals
et al., 2019). Moreover, a review from the early 21st century reported with AN strive for given the ego-syntonic nature of the disorder
that outcomes for AN have not improved significantly in the prior (Downs et al., 2023; Elwyn, 2023; Guarda et al., 2022). With these
50 years (Steinhausen, 2002). concerns in mind, Yager et al. (2022) published a response, suggest-
A high proportion of individuals with AN develop a chronic ing that T-AN can be adequately defined, AN can be both treatable
course, with some studies suggesting that approximately 20% fall and terminal, and that the terminal label itself is not dangerous.
into this category (Steinhausen, 2002). There is a growing body of Although many papers have been published in response to
literature on the concept of severe and enduring AN (SE-AN), Gaudiani et al.’ (2022) proposition, to our knowledge, no one has
which has been defined as a form of AN with a debilitating, persis- examined objective indicators of terminality that would be observed
tent course that may not respond to treatment (Touyz & Hay, 2015; if T-AN is a valid categorization. We recognize that the field’s lack
Touyz et al., 2013; Wonderlich et al., 2020). While there is no formal of an empirical approach to T-AN may be due to its inherently non-
consensus on a definition of SE-AN, Hay and Touyz (2018) pro- empirical, philosophical qualities, and that our approach herein
posed the following criteria: (a) clinically significant functional should be contextualized within that view. Nonetheless, in untreat-
impact; (b) at least a 3-year duration of illness; and (c) exposure to able instances of a terminal illness, one is likely to observe cohering,
at least two evidence-based treatments (Hay & Touyz, 2018). objective indicators of terminality when, for instance, assessing
While SE-AN is clearly a debilitating illness and many do not bloodwork. For example, albumin levels among end-stage cancer
recover or may die due to complications of AN, some work suggests patients and human immunodeficiency virus (HIV) are well below
that most individuals with a protracted illness course do recover healthy ranges (Feldman et al., 2003; Goldwasser & Feldman,
(Eddy et al., 2017). 1997; Hall & Cash, 2012; Mehta et al., 2006). Both albumin and
Gaudiani et al. (2022) proposed a presentation more extreme than aspartate aminotransferase (AST) levels can reflect liver functioning;
SE-AN, terminal AN (T-AN). The authors define those with T-AN like low albumin levels, high AST levels may indicate near-death
as: (a) having a diagnosis of AN; (b) being age 30 or older; (c) hav- status (Goldwasser & Feldman, 1997; Hall & Cash, 2012). There
ing persistently engaged in high-quality, multidisciplinary care; and is a pattern of biological objectivity and increasing network density
(d) persistent denial of further treatment, knowing death is the inev- of disease-related parameters within truly terminal illnesses, param-
itable outcome, while having intact decision-making abilities eters that should replicate across the definition of “terminal.”
(Gaudiani et al., 2022). These criteria overlap somewhat with Furthermore, defining any psychiatric condition as “terminal” has
those proposed for SE-AN, including history of engagement in treat- wide-reaching and concerning implications. Importantly, the sug-
ment and chronicity (defined in SE-AN by duration of illness and in gestions made by Gaudiani et al. (2022) could be generalizable to
T-AN by age), but the concept of T-AN substantially diverges from other Diagnostic and Statistical Manual of Mental Disorders, 5th
SE-AN in the conceptualization of death as an inevitable option for Edition (DSM-5) diagnoses, such as schizophrenia and bipolar dis-
those with a poor prognosis. Gaudiani et al. (2022) described three order, and thus empirically testing claims such as these is essential
individuals who died of chronic AN and proposed that individuals to direct clinical and ethical guidelines for treatment (Gaudiani
who meet their definition of T-AN should have a right to medical et al., 2022). Socially, identifying any mental illness as “terminal”
aid in dying in states where it is legal. has significant implications for the patient, their family, their
TERMINAL ANOREXIA NERVOSA 287
community, and society at large (Downs, 2023). Given the contro- interview. To ensure interviewer fidelity, masters-level clinical assess-
versy over the construct of T-AN, empirical research is needed to ment managers completed random quality audits on a sample of com-
assess the validity and utility of this label. To our knowledge, no pleted assessment documentation. Furthermore, physicians continually
study has empirically tested a definition of T-AN by examining evaluated and approved the diagnoses of the participants throughout
whether individuals who meet these criteria form a relatively treatment. Importantly, Criterion A requires a significantly low body
homogenous group that does not improve with treatment. weight. The DSM-5 acknowledges familial and other sources (e.g.,
In the present study, we sought to further examine the terminality physicians) may aid in evaluating the history of weight loss and
concept within an adult AN sample, operationalized in one set of anal- other features of AN, as it is rare for the individual to endorse criterion
yses using three of the four criteria suggested by Gaudiani et al. (2022; A or have accurate insight (APA, 2013, p. 340). As some of the partic-
i.e., diagnosis of AN, age of 30 or older, and prior persistent engage- ipants in both the T-AN and NT-AN groups had BMIs above the
ment in high-quality eating disorder care; T-AN), and in a subset of World Health Organization cutoffs (i.e., 18.5 kg/m2; APA, 2013),
T-AN that demonstrated desire for death, a proxy index of the fourth we would like to note that all/the vast majority of our sample had
criterion (T-AN—and a smaller subset who also met a proxy index threshold AN at some point in the fairly recent past, and either: (a)
of the fourth criterion involving death [TD-AN]). We sought to com- still had it at admission; or (b) did not quite meet full criteria at admis-
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
pare this “terminal” group and subset (T-AN and TD-AN) to a “not
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Table 1
Sample Characteristics
Terminal (n = 51) Not terminal (all; n = 731) Not terminal (30 and over; n = 133)
Group demographics n Range M (SD) n Range M (SD) n Range M (SD)
Age 51 30–61 42.65 (10.21) 731 18–65 25.15 (9.08) 133 30–65 41.45 (9.18)
Days admitted 51 6–278 70.92 (51.33) 731 1–366 78.22 (53.57) 133 2–366 77.56 (52.60)
Diagnosis % % %
AN-R 39 76.5 496 67.8 84 63.2
AN-BP 11 21.6 235 32.1 49 36.8
Level of care % % %
Inpatient 19 37.3 232 31.7 64 48.1
Residential 18 35.3 288 39.4 40 30.1
Partial hospitalization 10 19.6 146 20.0 18 13.5
Intensive outpatient 2 3.9 7 1.0 0
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Gender % % %
Female 48 94.1 616 84.3 115 86.5
Male 1 2.0 41 5.6 7 5.3
Nonbinary 1 2.0 27 3.7 4 3.0
Transgender 0 19 2.6 0
Denied response 1 2.0 28 3.8 2 1.5
Race % % %
Caucasian 47 92.2 593 81.8 114 85.7
Black/African American 1 2.0 13 1.8 1 0.8
Hispanic or Latino 1 2.0 33 4.5 1 0.8
Asian 0 21 2.9 3 2.3
American Indian/Native American 0 3 0.4 0
Native Hawaiian/Pacific Islander 0 2 0.3 1 0.8
Multiracial 1 2.0 17 7 3 2.3
Unknown 1 2.0 49 6.7 1 0.8
Note. AN-R = anorexia nervosa-restricting subtype; AN-BP = anorexia nervosa-binge-purge subtype.
Table 2
Descriptive Statistics
Terminal (n = 51) Not terminal (all; n = 731) Not terminal (30 and over; n = 133)
Group
Variable n Range M (SD) n Range M (SD) n Range M (SD)
Albumin-A 45 3.3–5.5 4.45 (0.58) 108 3.3–5.5 4.56 (0.42) 60 3.3–5.5 4.50 (0.43)
Albumin-D 29 3.7–5.0 4.49 (0.32) 88 3.4–5.1 4.41 (0.35) 45 3.4–5.1 4.39 (0.40)
AST-A 40 12–289 46.30 (61.65) 102 12–321 32.48 (47.85) 56 12–321 38.37 (58.79)
AST-D 29 9–63 24.66 (10.40) 87 9–63 23.45 (9.98) 45 9–63 26.05 (9.92)
BMI-A 51 11.3–33.2 18.41 (4.5) 731 11.2–39.8 18.38 (3.28) 133 11.4–30.8 17.90 (3.36)
BMI-D 51 11.7–35.1 20.79 (4.22) 731 13.0–39.9 21.23 (3.00) 133 15.5–35.9 21.18 (3.05)
PHQ-9-A 45 0–27 16.24 (6.98) 691 0–27 16.18 (7.03) 116 0–27 14.28 (7.53)
PHQ-9-D 44 0–26 12.57 (8.22) 626 0–27 10.22 (6.95) 119 0–25 8.28 (7.08)
GAD-7-A 42 0–21 13.81 (6.18) 424 0–21 13.81 (5.51) 76 0–21 12.62 (6.05)
GAD-7-D 41 0–21 10.73 (6.64) 436 0–21 10.11 (6.02) 83 0–21 8.67 (6.39)
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OCI-R-A 44 0–60 23.50 (16.79) 687 0–72 21.76 (15.92) 116 0–65 17.94 (14.45)
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OCI-R-D 45 0–54 17.60 (15.69) 623 0–65 17.14 (14.81) 120 0–60 13.13 (13.05)
EDE-Q-G-A 45 0–5.8 3.88 (1.84) 694 0–6 3.86 (1.56) 115 0.05–5.9 3.45 (1.71)
EDE-Q-G-D 45 0–6 2.75 (1.72) 628 0–5.6 2.33 (1.41) 120 0–5.1 2.19 (1.38)
EDE-Q-E-A 45 0–6 3.12 (1.67) 695 0–6 3.17 (1.57) 115 0–6 2.73 (1.77)
EDE-Q-E-D 45 0–6 2.03 (1.64) 628 0–5.2 1.63 (1.28) 120 0–4.4 1.41 (1.24)
EDE-Q-R-A 45 0–6 3.77 (2.33) 696 0–6 3.65 (1.97) 116 0–6 3.29 (2.14)
EDE-Q-R-D 45 0–6 1.75 (1.92) 630 0–6 1.14 (1.35) 121 0–5.8 1.00 (1.33)
EDE-Q-S-A 45 0–6 4.49 (1.94) 694 0–6 4.50 (1.62) 115 0–6 4.09 (1.80)
EDE-Q-S-D 45 0–6 3.83 (1.98) 628 0–6 3.57 (1.84) 120 0–6 3.49 (1.88)
EDE-Q-W-A 45 0–6 4.14 (1.88) 694 0–6 4.12 (1.70) 115 0–6 3.70 (1.83)
EDE-Q-W-D 45 0–6 3.40 (2.01) 628 0–6 2.97 (1.82) 120 0–6 2.85 (1.82)
Note. AST = aspartate aminotransferase; BMI = body mass index; PHQ-9 = Patient Health Questionnaire–9; GAD-7 = Generalized Anxiety Disorder–7;
OCI-R = Obsessive-Compulsive Inventory–Revised; EDE-Q = Eating Disorder Examination Questionnaire; A = admission; D = discharge; G = global;
E = eat concern; R = restraint; S = shape; W = weight.
0 = not at all to 4 = extremely. For the purposes of this study, the by a patient who possesses decision-making capacity that additional
scale was scored by summing all questions into one total score. treatment would be futile, knowing their actions will be fatal,” a
The measure has adequate reliability and validity (Huppert et al., T-AN subset (TD-AN; n = 16) who endorsed some desire for
2007). These data did not include item-level OCI-R scores, preclud- death on the PHQ-9, answering “several days” or more, was also
ing internal consistency reliability analysis; however, the test–retest compared to both NT-AN and the NTO-AN subset (see the online
reliability was substantial (r = .76; p , .001). supplemental materials). Due to the high number of statistical
tests, the Benjamini–Hochberg procedure was employed to control
Eating Disorder Examination–Questionnaire (EDE-Q) the familywise error rate (i.e., the chances of Type-I error), adjusting
the p-value threshold to p , .01 (Benjamini & Hochberg, 1995).
The EDE-Q is a 28-item self-report tool evaluating four different This p value was used for the remainder of analyses for ease of inter-
aspects of disordered eating: eating concern, restraint, shape con- pretation and consistency across comparisons.
cern, and weight concern (Berg et al., 2012; Rose et al., 2013).
The EDE-Q response format ranges from 0 = no days to 6 = every Treatment Response
day. For the purposes of this study, both the Global scale (an average
of the four subscales) and the four distinct subscales were scored and Next, to assess change over time, we calculated the percentage
used independently. The EDE-Q is a reasonably well-validated mea- of the T-AN group that did not improve on physiological or self-
sure (Berg et al., 2012; Rose et al., 2013) and had excellent reliability report measures from admission to discharge, comparing them to
at admission (α = .98) and at discharge (α = .99). both NT-AN and the NTO-AN subsets. Chi-square difference
tests were conducted to assess if these differences in improve-
ment were statistically significant. Analyses were repeated com-
Analytic Plan paring those in the TD-AN subset to both NT-AN and the
Descriptive Statistics and Group Heterogeneity NTO-AN subsets.
We then conducted regression analyses to compare terminal group
We analyzed and compared the descriptive statistics of the T-AN status and admission scores to predict discharge scores. The groups
group (e.g., standard deviations; see Table 2) at admission and dis- were coded NT-AN = 0 and T-AN = 1, with all regression analyses
charge to the “not terminal” group (i.e., NT-AN) and to the “not ter- predicting discharge outcomes from admission scores and group sta-
minal” subset, aged 30 and over (i.e., NTO-AN). To assess for tus (“terminal” vs. not; see Table 4). Eleven models were run involv-
differences in within-group heterogeneity, we tested standard devia- ing the entire sample (i.e., comparing T-AN to NT-AN), one for each
tion differences, using F tests (see Table 3; Snedecor & Cochran, of 11 clinical predictors/outcomes: albumin, AST, BMI, PHQ-9,
1982). Using a proxy for the fourth criterion presented by GAD-7, OCI-R, EDE-Q-global, EDE-Q-eating concern, EDE-Q-
Gaudiani et al. (2022, p. 1), “a clear and consistent determination restraint, EDE-Q-shape concern, and EDE-Q-weight concern.
290 ROBISON ET AL.
Table 3
F tests
Terminal and not terminal (all) Terminal and not terminal (30 and over)
Variable p F Effect p F Effect
Albumin-A .007** 1.91 1.91 .021* 1.82 1.82
Albumin-D .604 0.84 1.20 .623 0.64 1.56
AST-A .046* 1.66 1.66 .736 1.10 1.10
AST-D .748 1.09 1.09 .764 1.10 1.10
BMI-A ,.001*** 1.88 1.88 ,.001*** 1.79 1.79
BMI-D ,.001*** 1.98 1.98 .004** 1.91 1.91
PHQ-9-A .999 0.99 1.01 .576 0.86 1.16
PHQ-9-D .100 1.40 1.40 .213 1.35 1.35
GAD-7-A .278 1.26 1.26 .856 1.04 1.04
GAD-7-D .355 1.22 1.22 .754 1.08 1.08
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Each model was structured as follows: group status (T-AN vs. sharing), but code and output are accessible through the online supple-
NT-AN) and clinical predictor at admission predicting the clinical mental materials. Hypotheses and analyses were not preregistered.
predictor at discharge (see Table 3a–k). Eleven more identical anal-
yses were run comparing the T-AN group to the NTO-AN subset Results
(see Table 3l–v). Results were reanalyzed comparing those in the
TD-AN subset to both the NT-AN group and the NTO-AN subset Descriptive Statistics
(see the online supplemental materials). All regression analyses
See Table 1 for demographic statistics of the T-AN group, the
(i.e., admission scores to predict discharge scores) were additionally
NT-AN group, and the NTO-AN subset (see the online supple-
analyzed by each group and subset, respectively to compare the stan-
mental materials for the TD-AN subset demographic and descrip-
dardized regression coefficients across all groups and subsets (see
tive statistics). The T-AN group was not significantly different
the online supplemental materials).
from the NT-AN group regarding the frequencies of diagnostic
subtype (i.e., AN-restricting type and AN-binge-eating/purging
Sensitivity type), gender, race, or levels of care. The T-AN group was stat-
Finally, to assess statistical sensitivity, all analyses were reana- istically significantly different from the NT-AN group regarding
lyzed using 10 random subsamples with identical sample sizes to average age, t(827) = 13.59, p , .001; Cohen’s d = 1.83.3 The
robustly account for any patterns of missing data and to assess the T-AN group was not statistically significantly different from
consistency of our results. As an example, we randomly selected the NT-AN group regarding BMI at admission, t(780) = 0.05,
10 subsamples of 51 participants from the NT-AN group and 10 sub- p = .957; Cohen’s d = 0.01, nor at discharge, t(780) = 0.99,
samples of 51 participants from the NTO-AN subset to compare to p = .324; Cohen’s d = 0.12; see Figure 1. Please see Table 1
the T-AN group, respectively. Results were reanalyzed comparing for a full list of descriptive statistics regarding the sample
those in the TD-AN subset to both the NT-AN group and the
NTO-AN subset. Additionally, we also compared the averaged var- 3
A latent class analysis was conducted to further assess if the binary asso-
iances of the 10 random subsamples to the variance of the T-AN ciations related to the terminal criteria (i.e., AN type, age of 30 and over, read-
group and the TD-AN subset, respectively. mittance to high-quality care, and endorsement of desire for death) identified
a group presenting as “terminal.” Two-, three-, and four-class solutions were
analyzed with different indices supporting different class solutions. The two-
Transparency and Openness class solution did not support a “terminal” distinction because the model fit
was very poor, the distinction between the classes was minimal (i.e., low
Data are not publicly available (i.e., data involve medical health entropy = 0.52), and the classes were based entirely on the readmission
records, and participants did not consent to de-identified public data variable.
TERMINAL ANOREXIA NERVOSA 291
Table 4
Multiple Regression Models
Outcome
Model Predictor moderator β SE 95% CI t p sr 2
a (n = 116; R 2 = .121) Albumin-D
Albumin-A .34 0.09 [0.16, 0.51] 3.81 ,.001** .113
Terminality .11 0.09 [−0.06, 0.29] 1.25 .215 .012
b (n = 112; R 2 = .016) AST-D
AST-A .11 0.10 [−0.08, 0.30] 1.18 .241 .013
Terminality .04 0.10 [−0.15, 0.23] 0.39 .695 .004
c (n = 782; R = .545)
2
BMI-D
BMI-A .74 0.02 [0.69, 0.79] 30.53 ,.001** .544
Terminality −.04 0.02 [−0.08, 0.01] −1.52 .129 .001
d (n = 590; R 2 = .308) PHQ-9-D
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Table 4 (continued)
Outcome
Model Predictor moderator β SE 95% CI t p sr 2
v (n = 145; R 2 = .447) EDE-Q-W-D
EDE-Q-W-A .66 0.06 [0.53, 0.78] 10.52 ,.001** .431
Terminality .09 0.06 [−0.04, 0.21] 1.37 .174 .007
Note. Models a–k include not terminal (all); Models l–v include not terminal (30 and over). Terminality = −0.5 was not terminal, 0.5 was terminal. CI =
confidence interval; AST = aspartate aminotransferase; BMI = body mass index; PHQ-9 = Patient Health Questionnaire–9; GAD-7 = Generalized Anxiety
Disorder–7; OCI-R = Obsessive-Compulsive Inventory–Revised; EDE-Q = Eating Disorder Examination Questionnaire; A = admission; D = discharge;
G = global; E = eat concern; R = restraint; S = shape; W = weight.
* p , .05. ** p , .01.
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separated by group status (i.e., T-AN, NT-AN, and NTO-AN; see p = .842, wc = .02), and remained nonsignificant when comparing
This document is copyrighted by the American Psychological Association or one of its allied publishers.
the online supplemental materials for the TD-AN subset descrip- the TD-AN subset and the NTO-AN subset (χ2 = 0.50, p = .478,
tive statistics).4 wc = .10).
The T-AN group had two out of 29 (6.9%) discharge with AST
Group Heterogeneity levels slightly above the healthy range. The NT-AN group had six
participants discharge with slightly elevated AST levels (NT-AN:
F tests were conducted on standard deviations (see Table 2) on six out of 87 [6.9%]; NTO-AN subset: four out of 45 [8.9%]).
both admission and discharge scores of all study variables (see The chi-square difference test between the T-AN and NT-AN groups
Table 3).5 The standard deviations for the T-AN group and the was not statistically significant (χ2 = 0.00, p = 1.00, wc = 0), and
T-AN subset endorsing desire for death (TD-AN; see the online sup- remained nonsignificant when comparing the T-AN group and the
plemental materials), compared to the NT-AN group and the NT-AN NTO-AN subset (χ2 = 0.09, p = .759, wc = .04). Every participant
subset 30 years or older (NTO-AN), were generally similar, and if in the TD-AN subset (i.e., endorsing a desire for death) discharged
anything, larger in T-AN group and the TD-AN subset. with healthy ranges of AST; chi-square difference tests between the
The T-AN group (compared to NT-AN) had statistically signifi- TD-AN subset and the NT-AN group were not statistically signifi-
cantly larger standard deviations on Albumin levels at admission, cant (χ2 = 0.66, p = .416, wc = .08), and remained nonsignificant
BMI at admission and discharge, and EDE-Q Restraint at discharge when comparing the TD-AN subset and the NTO-AN subset
(p , .01). The T-AN group (compared to the NTO-AN subset) had (χ2 = 0.86, p = .353, wc = .13).
statistically significantly larger standard deviations on BMI at admis- When comparing both BMI and across all self-report measures
sion, BMI at discharge, and EDE-Q restraint at discharge (ps , .01). (e.g., PHQ-9, GAD-7, OCI-R, and EDE-Q) zero out of 51 (0%) of
The TD-AN subset was then compared to the NT-AN group and the T-AN group worsened regarding both BMI and across all self-
NTO-AN subset. The TD-AN subset had statistically significantly report measures; these results were identical for the NT-AN group
lower standard deviations than the NT-AN group (p , .01) and (NT-AN: zero out of 321 [0%]; NTO-AN subset: zero out of 68
NTO-AN subset (p , .01) on AST at admission; however, all partic- [0%]). In T-AN, one out of 51 (2.0%) worsened on all self-report
ipants fell within normal ranges. The TD-AN subset had statistically measures independent of BMI. The NT-AN group had lower per-
significantly higher standard deviations than the NTO-AN subset on centages of participants who worsened across all self-report mea-
BMI at admission (p , .01). sures (NT-AN: three out of 321 [0.93%]; NTO-AN subset: zero
out of 68 [0%]). Chi-square difference tests between the T-AN
Treatment Response and NT-AN groups, however, indicate no statistically significant dif-
ference between them (χ2 = 0.44, p = .509, wc = .04), and remained
We then identified, by group (e.g., the T-AN group compared to
non-significant when comparing the T-AN group and the NTO-AN
the NT-AN group), individuals who did not show improvement
subset (χ2 = 1.35, p = .246, wc = .11). Every participant in the
from admission to discharge on biological measures, BMI, and all
TD-AN subset (i.e., endorsing a desire for death) improved on
self-report measures. Regarding biological parameters, the T-AN
group had one participant (in the TD-AN subset) out of 29 (3.4%)
discharge with Albumin levels slightly below healthy ranges. The 4
Eight participants in the T-AN group (15.7%) had an involuntary admis-
NT-AN group had eight participants (five in the NTO-AN subset) sion at some point during their treatment (two of whom were in the TD-AN
discharge with Albumin levels slightly below healthy ranges subset); only one participant of the eight did not improve on the EDE-Q mea-
(NT-AN: eight out of 88 [9.1%]; NTO-AN subset: five out of 45 sures (while improving on all other measures) during their stay. Furthermore,
[11.1%]). The T-AN group and the NT-AN group percentages everyone in the TD-AN subset showed improvement. We randomly selected
60 participants in the NT-AN group (30 of whom were NTO-AN), three of
were not statistically significantly different from one another whom had involuntary visits (5.0%). The three participants were all over
(χ2 = 0.98, p = .323, wc = .09), and remained nonsignificant when 30 years old. Chi-square difference tests between T-AN and NT-AN were
comparing the T-AN group to the NTO-AN subset (χ2 = 1.39, not statistically significant (χ2 = 3.53, p = .060) and remained non-
p = .238, wc = .14). One participant in the TD-AN subset dis- significant when comparing T-AN to NTO-AN (χ2 = 0.77, p = .382).
5
Only AST and albumin results (not WBC counts) are included in the final
charged with serum levels of albumin slightly below healthy ranges; analyses presented. WBC was collected at admission, with an n = 9 at dis-
chi-square difference tests between the TD-AN subset and the charge for the terminal sample, precluding full inclusion. Nevertheless, for
NT-AN group were not statistically significant (χ2 = 0.04, those nine patients, WBC looked unremarkable.
TERMINAL ANOREXIA NERVOSA 293
Figure 1
BMI Admission to Discharge by Group
BMI Admission to Discharge
22.00
21.00
20.00
T-AN
19.00 TD-AN
NT-AN
18.00
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NTO-AN
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17.00
16.00
Admission Discharge
Note. BMI = body mass index; T-AN = terminal anorexia nervosa; NT-AN = not terminal anorexia nervosa;
TD-AN = T-AN—and a smaller subset who also met a proxy index of the fourth criterion involving death;
NTO-AN = to a “not terminal” subset 30 years of age or older. See the online article for the color version of
this figure.
both BMI and across all self-report measures; chi-square difference discharge, controlling for their respective scores at admission.
tests comparing the percentages of participants who worsened across Similar results emerged when comparing the TD-AN subset to the
all self-report measures (independent of BMI) between the TD-AN NT-AN group and the NTO-AN subset. Group status was statisti-
subset and the NT-AN group were not statistically significant cally significantly predictive of EDE-Q-restraint at discharge when
(χ2 = 0.15, p = .698, wc = .02). comparing the TD-AN subset to the NT-AN group (p , .01 level;
Finally, we compared the groups and subsets exclusively on the β = .13, SE = 0.04, p = .002, sr 2 = .016) and remained significant
EDE-Q subscales. In the T-AN group, four of 51 (7.8%) worsened when comparing the NT-AN subset to the NTO-AN subset
only on EDE-Q subscales. In the NT-AN group, a lower percentage (β = .28, SE = 0.09, p = .002, sr 2 = .076). In both instances, the
of participants worsened only on EDE-Q subscales (NT-AN: 19 of TD-AN subset reported higher EDE-Q-restraint scores at discharge,
403 [4.7%]; NTO-AN subset: five of 93 [5.4%]). Chi-square differ- controlling for their respective scores at admission.
ence tests between T-AN and NT-AN, however, were not statisti- Regression analyses independently examined by each group and
cally significant (χ2 = 0.92, p = .337, wc = .04), and remained subset indicated fairly similar standardized regression coefficients
nonsignificant when comparing T-AN to NTO-AN (χ2 = 0.34, and overlapping confidence intervals (see the online supplemental
p = .557, wc = .04). Every participant in the TD-AN subset materials).
improved across all EDE-Q related measures; chi-square difference
tests between the TD-AN subset and the NT-AN group were not stat- Sensitivity
istically significant (χ2 = 0.79, p = .374, wc = .04), and remained
non-significant when comparing the TD-AN subset and the Finally, all results were reanalyzed comparing the T-AN group to
NTO-AN subset (χ2 = 0.90, p = .342, wc = .09). 10 random subsamples of the NT-AN group (n’s = 51) and to 10
simple random subsamples of the NTO-AN subset (n’s = 51).
Terminal Group Status and Admission Scores to Predict Additionally, the TD-AN subset was compared to 10 simple random
Discharge subsamples of the NT-AN group (n’s = 16) and to 10 random sub-
samples of the NTO-AN subset (n’s = 16). In total, 1,800 analyses
Next, multiple regression analyses tested the effect that “terminal” were conducted (i.e., 45 analyses per subsample, replicated 10 times
group status had on admission to discharge scores (T-AN compared across four comparison groups). We also compared the averaged var-
to both NT-AN and NTO-AN; see Table 3). Group status (i.e., T-AN iances of the 10 random subsamples to the variance of the T-AN
compared to NT-AN) was statistically significantly predictive of group and the TD-AN subset, respectively. These analyses affirm
EDE-Q-Restraint at discharge (p , .01 level; β = .13, SE = 0.04, the results and conclusions of the main analyses (i.e., the averaged
p , .001, sr 2 = .017) such that the T-AN group reported higher lev- variances were overwhelmingly nonsignificant and when signifi-
els of restraint concerns at discharge, controlling for scores at admis- cant, the T-AN group and TD-AN subset had higher variability).
sion. When the T-AN group was compared to NTO-AN, group status Age was the only consistently significantly different parameter
was statistically significantly predictive of PHQ-9 at discharge between the T-AN group/TD-AN subsets and the NT-AN subsam-
(β = .18, SE = 0.07, p = .009, sr 2 = .032) and EDE-Q-restraint at ples. This finding can be viewed as validity check on our analyses
discharge (β = .24, SE = 0.08, p = .002, sr 2 = .057) such that the as age differences are built into the criteria for “terminality.”
T-AN group reported higher PHQ-9 and EDE-Q-restraint scores at Otherwise (i.e., independent of the finding regarding expected age
294 ROBISON ET AL.
differences) of the 1,760 analyses conducted not involving age, of the T-AN concept (i.e., less than one percent of the results) was
1,743 did not support the concept of T-AN (i.e., over 99% were non- that six results out of 40 involved higher mean levels of EDE-
significant or against the concept of “terminal”). Put differently, 17 Q-restraint concerns at discharge among the T-AN group in the
analyses of the 1,760 not involving age accorded with the T-AN con- regression analyses.
cept (0.97%). As the p value was set to .01, it is reasonable to expect Taken together, the information presented here indicates that the
one in 100 significant findings to be attributable to chance alone. groups labeled “terminal” do experience a severe illness, but that
The only conceivable solace in these findings for supporters of the these groups are not homogenous, do not appear to be meaningfully
T-AN concept was that of the 17 significant results, six which different from those categorized as “not terminal,” and show overall
involved higher mean levels of EDE-Q-restraint concerns at dis- improvement from admission to discharge, similar to the “not terminal”
charge among the T-AN group in the regression analyses. groups. Thus, the results presented in this study suggest that the use of a
However, these six significant findings out of 40 analyses on “terminal” label for any client with AN meeting the criteria outlined by
EDE-Q-restraint concerns (i.e., 10 subsamples across four groups), Gaudiani et al. is premature and potentially unsupportable.
are outweighed by the 34 which did not support the T-AN position.
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Limitations
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Discussion
While our study provides evidence against the existence of a “ter-
The aims of this study were to compare the heterogeneity and treat- minal” course of AN, we acknowledge limitations of our findings.
ment responses of a clinical sample categorized as T-AN, using three Most obviously, we did not directly assess the fourth specifier in
of the four criteria that Gaudiani et al. (2022) proposed for T-AN— Gaudiani et al.’s (2022, p. 1) definition of T-AN: “clear and consis-
and a smaller subset who also met a proxy index for the fourth tent determination by a patient who possesses decision-making
criterion—to a “not terminal” group and a smaller subset 30 years capacity that additional treatment would be futile… and they accept
of age or older. The T-AN group, compared to the NT-AN group that death will be the natural outcome” (italics added). Although we
and NTO-AN subset, displayed similar means, with generally examined the TD-AN subset who met a proxy index for this fourth
equal or higher variability on physiological and self-report measures. criterion (i.e., desire for death) and demonstrated that this subset is
Additionally, the TD-AN subset, compared to the NT-AN group and similar to the larger T-AN group, we likely did not fully assess the
NTO-AN subset, also displayed similar means with generally higher fourth criterion as it was intended. Thus, we can only speak fully
variability. All statistically significant differences indicated that the to a definition of terminality operationalized primarily by the first
T-AN group had higher variability compared to NT-AN group and three of four criteria proposed for T-AN. We did, however, approx-
NTO-AN subset (though the TD-AN subset had statistically signifi- imate the fourth criterion, especially its emphasis on death ideation
cant smaller variability in the AST at admission), indicating generally (see italicized phrase above). We emphasize that the item in question
equivalent patterns of heterogeneity for “terminal” and “not termi- is not an optimal index of the death-related criterion proposed by
nal” groups, at odds with the concept of terminality. Gaudiani et al., we urge readers to consider this important point in
Regarding improvement, all groups, including T-AN and the interpreting our findings, and we encourage future work using a
TD-AN subset, mostly showed significant improvement from admis- more precise index of the relevant criterion as originally described
sion to discharge across all measures. The T-AN group showed by Gaudiani et al. We would add that this criterion strikes us as
higher percentages of participants with a higher percentage of partic- the most subjective of the four criteria and is the only one to rely
ipants who worsened on all self-report measures (i.e., PHQ-9, on patient rather than clinician judgment—a potentially problematic
GAD-7, OCI-R, and EDE-Q), and a higher percentage of partici- basis on which to affix a terminal label.
pants who worsened specifically on EDE-Q subscales. However, Because there were no established effects between groups of inter-
these percentages were not statistically significantly different from est from which to draw, power analyses were only conducted post hoc
the NT-AN group nor from the NTO-AN subset, nor were they clin- using observed effect sizes. Unsurprisingly, power varied greatly
ically significant or concerning. Moreover, the TD-AN subset based on observed effects, ranging from .05 to .99, which may indi-
improved across all biological, BMI, and self-report measures. cate a true lack of difference in a sample size below the thousands.
Finally, the regression models (i.e., comparing the T-AN group to We acknowledge that sample sizes were relatively small for our “ter-
the NT-AN group, the T-AN group to the NTO-AN subset, the minal” groups, which limited statistical power. One view of our
TD-AN subset to the NT-AN group, and the TD-AN subset to the efforts herein is that we simply showed that standard deviations
NTO-AN subset) were statistically significant across all comparisons are typically larger for smaller cell sizes, unsurprising because the
for EDE-Q-restraint subscale and indicated that group status was formula for the standard deviation includes group size, or that under-
also significant for PHQ-9 scores when comparing the T-AN powered analyses typically do not return significant effects, and
group to the NTO-AN subset. These findings suggest that the we encourage readers to weigh this conclusion against our own:
T-AN group endorses higher restraint concerns and symptoms of Namely, that the totality of evidence we present here is at least
depression above and beyond their admission scores. suggestive of the potential invalidity of the T-AN concept.
When analyses were repeated using 10 random subsamples Specifically, regarding standard deviations, we add that while it is
matched for sample size, only age (comparing the T-AN group to of course true that group size is included in the formula for the stan-
the NT-AN group and the TD-AN subset to the NT-AN group) dard deviation, it is also true in our view that in truly terminal ill-
was consistently statistically significant. Otherwise, results were nesses, variability should nonetheless be low specifically regarding
overwhelmingly either nonsignificant, or, if significant, in the direc- key illness-related parameters. Here, it was not. Efforts to replicate
tion opposite that expected by T-AN proponents (i.e., over 99% of our findings with larger samples are of course encouraged, though
the results). The only conceivable pattern in our findings in support we acknowledge that such projects are inherently challenging from
TERMINAL ANOREXIA NERVOSA 295
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