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REGULAR ARTICLE

A Pilot Case Series Using Qualitative and Quantitative


Methods: Biological, Psychological and Social
Outcome in Severe and Enduring Eating Disorder
(Anorexia Nervosa)
ABSTRACT sample of patients with schizophrenia for
James Arkell, MA (Cantab), Objective: We explore the level of dis- self-care and social contact. Participants
MBBS, MRCPsych* ability and quality of life in participants were severely depressed and scores for
Paul Robinson, MD, FRCP, with severe and enduring eating disorder quality of life mirrored those of the pri-
FRCPsych (anorexia nervosa). mary care population. Qualitative data
illustrate intrapersonal and interpersonal
Method: We use qualitative and quanti-
avoidance leading to self-neglect and
tative methods to assess in detail eleven
social isolation despite social skills.
participants with a 10-year history of ano-
rexia nervosa. Outcomes for quality of life Conclusion: Quality of life and living
are compared with those of a sample of skills are as impaired as those of other
primary care patients with moderate– severe and enduring mental illnesses.
severe depression. Outcomes for living skills V
C 2008 by Wiley Periodicals, Inc.

are compared with a standardized commu-


nity sample of patients with schizophrenia. Keywords: severe, enduring, anorexia
nervosa, disability, quality of life
Results: Despite scoring highly for com-
munication skills and levels of responsibil-
ity, participants were as impaired as the (Int J Eat Disord 2008; 41:650–656)

social disability. There are often significant co-mor-


Introduction
bidities with depression, anxiety, obsessive compul-
Anorexia nervosa is a psychiatric disorder character- sive disorder and personality disorder.6,7 There is a
ized by refusal of an individual to maintain a mini- long-term mortality rate of about 5%7 although
mum normal body weight, often to the point of star- some studies have shown it to be as high as 15%.8–10
vation. The core feature is an intense fear of gaining Most studies have reported on cohorts and have not
weight.1,2 It affects primarily young women. There reported in detail, exclusively on patients with the
has been a small increase in the global incidence of severe chronic form of anorexia nervosa. Moreover,
this illness throughout the 20th century, but in the the National Institute of Clinical Excellence Guide-
UK over the past 12 years the incidence has been lines for Eating Disorders (2004) do not make provi-
remarkably stable for women aged 10–39 at about 20 sion for the specific needs of this sub-group of
per 100,000.3 The peak age at onset of anorexia nerv- patients. Studies assessing quality of life in eating
osa is the mid-teens and that of bulimia nervosa is 2 disorders have focused mainly on participants in the
or 3 years later. The average duration of anorexia acute phase of the illness.11
nervosa is 6 years.4 However, up to 20% of patients The level of impairment has been benchmarked
presenting with anorexia nervosa have gone on to against the healthy12,13 or the physically ill14 partic-
develop a severely disabling chronic form of the ill- ipants, rather than those with other mental illness.
ness, severe and enduring eating disorder (SEED- There are established tools to measure disability
AN),5 with significant physical, psychological, and in chronic mental illness,15,16 but they have been
rarely used in the context of eating disorders. This
Accepted 3 March 2008 study aims to assess in detail the level of disability
*Correspondence to: James Arkell, South Kensington and Chelsea
Mental Health Centre, Central and North West London NHS
and quality of life in participants who have been
Foundation Trust, 1 Nightingale Place, London SW10 9NG, consistently ill with anorexia nervosa for over 10
United Kingdom. E-mail: jamesarkell@nhs.net years. It aims to benchmark the level of impairment
Department of Mental Health Sciences, Royal Free and in both these domains against standardized sam-
University College Medical School, London, United Kingdom
Published online 29 April 2008 in Wiley InterScience
ples with severe mental illness. This study will
(www.interscience.wiley.com). DOI: 10.1002/eat.20546 examine the proposition that anorexia nervosa in a
V
C 2008 Wiley Periodicals, Inc. chronic form is a serious psychiatric disorder that

650 International Journal of Eating Disorders 41:7 650–656 2008


OUTCOME IN SEVERE AND ENDURING EATING DISORDER (SEED-AN)

leads to a global impairment of functioning similar havioral aspects of anorexia nervosa and bulimia. The
to that of schizophrenia. eight subscales that comprise the eating disorders inven-
tory (EDI) are called: Drive for Thinness (DT), Bulimia
(B), Body Dissatisfaction (BD), Ineffectiveness (I), Perfec-
tionism (P), Interpersonal Distrust (ID), Interoceptive
Method Awareness (IA), and Maturity Fears (MF). A maximum of
142 is possible. The anorexic group in the original study
Participants and Recruitment scored a mean of 89.4 and the female comparison group
All the participants were known to the The Russell Unit scored 32.
Eating Disorders Service. This is a community-focused
service in North London, which at the time of the study Bulimic Investigatory Test, Edinburgh.20. This is a self-
covered a population of 750,000. All participants were report questionnaire for the detection and description of
between 10 and 60 years old. An activity sheet of all outpa- binge eating. It has established satisfactory reliability and
tient contacts for one month at the unit was assembled. A validity. The scale has measures of both symptoms and
total of 27 participants with a greater than 10-year history severity. A symptom score of 20 or more indicates highly
of a diagnosis of an eating disorder were identified through disordered eating pattern and binge eating. A severity
review of the case notes. (They must have continuously score indicates the frequency of bingeing and purging. A
fulfilled the criteria for an ICD-101 diagnosis of Anorexia score of over 5 is clinically significant.
Nervosa F50.0 apart from temporary (\3 months) weight Life Skills Profile.15,16. This is an objective question-
restoration due to hospital admission). naire completed by the interviewer. It was developed as a
Of these 27 participants, five were excluded due to either measure of those aspects of functioning ‘‘life skills’’
pregnancy or severe illness leading to either physical inability which affected how successfully people with schizophre-
or lack of capacity to consent. The 22 remaining were con- nia lived in the community or in a hospital. However the
tacted by mail or telephone and asked to attend the Russell life skills profile (LSP) has been applied to a broad range
Unit for a one-hour interview. Three declined and eight did of diagnoses. The LSP rates functioning on five domains
not respond. The remaining 11 attended an interview. The and gives an overall total score. Self-care reflects an abil-
mean age was 37.7 years (SD 5 8 years). The mean BMI was ity to attend to personal hygiene, financial, nutritional
15.8 kg/m2 (SD 5 2 kg/m2). There were 10 females and 1 and medical needs. Responsibility reflects a willingness
male. All were in active treatment. Of the 16 not included in to cooperate with health services and to look after per-
the study BMI mean was 16.2 kg/m2 (SD 5 0.8 kg/m2) and sonal possessions. Social contact describes the degree
age mean was 31.9 years (SD 5 6.4 years). Ethical approval to which the person can maintain friendships, demon-
for the study was obtained prior to starting the study. strate interpersonal warmth and participate in
social groups. Communication describes an ability to
Quantitative Measures and Procedure converse appropriately and coherently. Non-turbulence
A combination of subjective and objective assessment includes reckless, offensive, aggressive and irresponsible
tools were used. The interview included questions about behavior including substance misuse and criminal
past psychiatric treatments and physical health. behavior.

Questionnaires Used
The World Health Organization Quality Of Life Assess-
Beck Depression Inventory.17. The revised beck depres- ment.21,22. This is a multidimensional multilingual
sion inventory (BDI) is a 21-item self-assessment of profile for subjective assessment. It is a generic measure
depression severity. Total scores of 0–9 indicate no signifi- designed for use with a wide spectrum of physical and
cant symptoms, 10–18 mild/moderate symptoms, 19–29 psychological disorders. 100 items are attached to a five-
moderate/severe depression and 30–63 extremely severe point Likert response scale and high scores (recoded for
depression. negatively framed items) denote high QOL. The UK
instrument shows excellent psychometric qualities of in-
Maudsley Obsessive Compulsive Inventory.18. This is a
ternal consistency, reliability and construct validity. The
30-item, true–false, self-report questionnaire containing
maximum score for each domain is 20 with a maximum
statements regarding OCD symptoms. It is not a diagnos-
total score for the six domains of 120. The domains meas-
tic scale. The original data showed obsessional patients to
ured are physical, psychological, independence, social
score an average of 18.86 (SD 5 4.92) compared with non-
relations, environment, and spiritual.
obsessional neurotic patients scoring 9.27 (SD 5 5.43).

The Eating Disorders Inventory.19. This is a 64-item, Qualitative Procedure


self-report questionnaire, designed to provide informa- The participant was also invited to write for up to ten
tion on eight separate dimensions of cognitive and be- minutes about their own understanding of the key factors

International Journal of Eating Disorders 41:7 650–656 2008 651


ARKELL AND ROBINSON

TABLE 1. Comparison of LSP scores of participants with TABLE 2. Comparison of WHOQOL scores of participants
anorexia nervosa and a standardized community sample with anorexia nervosa and scores in a primary care
of participants with schizophrenia16 population with depression22
Standardized WHOQOL Scores
Maximum Community Participants with
Life Skills Profile Possible Sample (N 5 128), Anorexia Nervosa Participants with Primary Care
Score Domains Score Mean (SD) (N 5 11), Mean (SD) Anorexia Population with
Nervosa (N 5 11), depression (N 5 106),
Self-care 40 31 (6.3) 32.9 (4.7) WHOQOL Domains Mean (SD) Mean
Non-turbulence 48 39 (6.7) 44.6 (4.7)
Social contact 24 14 (3.9) 17 (4.9) Physical health 11.9 (2) 11.0
Communication 24 19 (3.3) 23.7 (0.5) Psychological 9.2 (2.3) 9.9
Responsibility 20 16 (3.3) 19.8 (0.4) Level of independence 13.3 (3.3) 13.0
Total score 156 119 (117.7) 136.4 (13.3) Social relations 10.4 (1.4) 11.3
Environment 13.3 (2.4) 12.7
Spiritual 9 (3.3) 10.4
that underpinned their quality of life. They were given a Total 67.1 (10.8) 68.18
pro-forma with ‘‘anorexia my friend’’ and ‘‘anorexia my
enemy’’ as subsections. A similar method has been used
EDI Scores
for eating disorders in previous studies.23,24
The score mean was 80.8 (SD 5 25.6). EDI scores
did not significantly negatively correlate with LSP
total scores (20.64) or with WHOQOL-100 total
scores (20.65). EDI correlated very highly with the
Results psychological scores on WHOQOL-100 (20.90)
Correlation coefficients above 0.67 were statisti- probably partly because they both include ques-
cally significant with p 5 0.025. tions about body image.

BDI Scores
LSP Scores
The mean score for the 11 participants was 33.5 The Living Skills Profile scores were compared
(SD 5 12.7), which falls in the severely depressed with those of a standardized community sample of
range. There was a strong negative correlation patients with schizophrenia.16 Unlike the patients
between BDI scores and total LSP scores (20.95). A with schizophrenia the participants with anorexia
significant negative correlation was found between nervosa scored highly on communication and
BDI scores and the total scores for World health or- responsibility. However their scores for self-care,
ganization quality of life (WHOQOL-100) (20.78) non-turbulence and social contact approached that
and the psychological component (20.85). of the community sample of patients with schizo-
phrenia (see Table 1). There was a significant posi-
Maudsley Obsessive Compulsive
tive correlation between total WHOQOL-100 scores
Inventory Scores
and LSP scores (0.75).
The mean score for participants was 13.7 (SD 5
8.2). Three participants scored over 20. The Mauds-
ley Obsessive Compulsive Inventory (MOCI) scores WHOQOL Scores
correlated significantly with BDI (0.71) and EDI As a comparison group scores were taken from a
(0.72) scores. However, correlation with LSP was study assessing quality of life in a community sam-
only just significant (20.68) and not significant ple of 106 adult patients (mean age of 41.4 years,
with WHOQOL-100 scores (20.53). 74% women) visiting their GP for moderate to
severe depression in the South East of England.22
Bulimic Investigatory Test, Edinburgh Scores Participants with anorexia nervosa scored remark-
‘‘Symptom’’ score mean was 13.4 (SD 5 6.6) and ably similarly on the WHOQOL-100 when com-
‘‘severity’’ score mean was 3.4 (SD 5 4.6). Only pared with this primary care population with
three participants scored over 20 on the symptom depression (see Table 2).
score and over 5 on the severity score. This indi- (The scores for depression in this group were
cates that only three participants had clinically sig- slightly less than those for the participants with an-
nificant bulimic symptoms. Correlations with orexia nervosa. The mean BDI score of 25.411 indi-
Bulimic Investigatory Test, Edinburgh (BITE) scores cating moderate–severe depression compared with
did not reach significance with either LSP (20.58, 33.5 (12.7) for the participants with anorexia nerv-
20.57) or with WHOQOL-100 Scores (20.58, osa, which is in the extremely severely depressed
20.51). category.)

652 International Journal of Eating Disorders 41:7 650–656 2008


OUTCOME IN SEVERE AND ENDURING EATING DISORDER (SEED-AN)

A significant negative correlation was found relationship I thought would come so easily with
between BDI scores and the total scores for WHO- humans. It is always there for me stopping me feel-
QOL-100 (20.78) and the psychological component ing alone’’; ‘‘The amount of time being anorexic
of WHOQOL-100 showed an even stronger correla- takes cuts off situations it would have been hard to
tion to BDI (20.85). It is unsurprising that mood face’’; ‘‘I don’t need anyone else or have to interact
and subjective perception of QOL is highly corre- with anyone else, I can manage without any inter-
lated as it was also in the primary care population. ference from anyone.’’
It is interesting that BDI scores also correlated
Intrapersonal Avoidance. ‘‘Avoids having to face feel-
highly with EDI scores (0.73) making it difficult to
ings’’; ‘‘It gives me something to think about if I’m
unpick mood from eating disordered symptoms or
bored or awake in the early morning’’; ‘‘I couldn’t
conclude that mood alone accounts for the poor
cope without it. Life would be harder and I would
QOL scores. BMI and BDI scores surprisingly did
be more depressed and my feelings would be
not correlate highly with the physical component
strange and not blocked by tiredness or lack of
of WHOQOL-100 (0.37, 20.46), where one would
food. I couldn’t have a better life so it blocks some
have anticipated that mood and body mass would
unpleasant feelings’’; ‘‘You close my eyes when I
have informed perception of physical health.
don’t want to know and knock me out when I don’t
wish to feel’’; ‘‘It helps me cope with life and keeps
Qualitative Data and Analysis
me safe and safe from the badness in the world’’;
The data from the unstructured writing was ‘‘Keeps my demons locked away, of inadequacy,
explored using standard, recommended qualitative failure, weakness, indecision, reaching expectations,
methods. Individual transcripts were read repeat- criticism, feeling vulnerable, exposed, angry, sad etc,
edly by JA and through this process emerging com- easier to avoid situations where I feel those feelings.
mon themes and ideas were identified. In qualita- Life is less complicated, less fearful, less uncertain.’’
tive analysis, the next step is the development of a
thematic framework, which can be systematically Control/Restraint. ‘‘Ensures that I remain disciplined
applied to the data. The data would then be coded and in control. By keeping things strict it avoids
according to an index derived from this framework. ambiguity and generally there is a rule for every-
A chart would then be developed onto which thing so no decision is entirely based just on my
quotes could be sorted under each relevant theme. wants and desires’’; ‘‘The anorexia ensures I don’t
Once the data were charted it would be possible to become selfish or greedy, it lowers the chance of
identify the key characteristics and interpret the me losing control or overindulging’’; ‘‘If I wasn’t
data set. The key themes emerging were that of anorexic I would be out of control’’; ‘‘Quite com-
interpersonal avoidance and avoidance of intraper- forting knowing I’m never going to eat too much’’;
sonal mood states. Other themes were self-punish- ‘‘Allows me to feel secure about my eating habits.’’
ment, self-denial, self-control, family and physical
Achievement/Purpose. ‘‘Feel a sense of purpose, a
health.
drive’’; ‘‘Sense of achievement/superiority’’; ‘‘Chal-
Positive Aspects of Eating Disorders lenges such as walking, exercising, restricting pro-
vide a sense of achievement, structure and routines
Interpersonal Avoidance. ‘‘Familiar/safe’’; ‘‘Reliable’’;
occupies my mind. Makes me feel strong and push
‘‘Avoids having to cope with life’’; ‘‘It’s a way of myself to extremes, denying myself things. Fills an
knowing I have an automatic way of knowing/feel- emptiness, void within myself. Creates my own
ing I have something to run to’’; ‘‘Out of all friends I world with rules, shoulds/shouldn’ts and the real
could have had I chose you. There was no obvious world fades, matters less’’; ‘‘It gives me a structure
alternative perhaps because I didn’t look. I come to to the day’’; ‘‘Feel tired at the end of the day’’;
you when I don’t want to be seen’’; ‘‘You provide ‘‘Strength, because it requires discipline and acting
me with explanations like when I don’t turn up or on rules. Sense of achievement, because I am quite
miss the occasion when I am too late. You dry my good at it’’; ‘‘Helps my depression because I feel I
tears and hide my littleness from others. You save am looking after myself by letting me do/eat what I
me from standing up for myself – from saying no.’’; want a few times a week. Gives me something to
‘‘I can trust it and rely on it because it is so strict, I look forward to something that is mine. Takes up
know where I stand. In a way the anorexia can be a time.’’
good excuse to keep me away from others. It can
act as a get out clause, an excuse . . . it ensures I Self-Punishment/Self-Denial. ‘‘By keeping control of
don’t get close or comfortable with anyone of any- me the Anorexia prevents me from being to kind to
thing and keeps me on guard’’; ‘‘It’s the marriage or myself, becoming selfish because If I was to start

International Journal of Eating Disorders 41:7 650–656 2008 653


ARKELL AND ROBINSON

doing what I want I run the risk of not putting other Impact on Family. ‘‘I am deeply sorry that I have put
people and their needs before mine, thus giving my family though all sorts of worry and upset’’;
people more of a reason to dislike and hurt me’’; ‘‘‘Real’ world becomes more and more alien and
‘‘When I hate myself it’s a way to treat myself badly. difficult to remain in. Damages relationships with
It is like a self-destruct button and this has been family and friends. Puts them in a situation where
what I wanted sometimes’’; ‘‘It’s enabling me to get other people feel the need to take responsibility for
into clothes that I love, I eat cake and it doesn’t put my eating and health. Puts me in a situation where
weight on me because if I have it because if I have I I need to be hospitalized’’; ‘‘It has caused a great
cut back on the rest of the meal. I’m not on any deal of worry and pain to my family’’; ‘‘I wish my
diets and eat anything I fancy—it’s just I end up mother had not died with a memory of me like this.
missing protein out or eating fruit and salads if I’m I have let down so many people who have tried to
eating out later.’’ help.’’

Achievement/Purpose. ‘‘It has ruined my life and


Negative Aspects of Eating Disorders
changed it. When younger I used to burst out
Interpersonal Avoidance. ‘‘I don’t belong in the sometimes and feel really upset about my situation
world. I’ll never be good enough for your world and but I don’t now. Is that as I feel better or is that part
I most certainly don’t belong in the real world, I of me stifled and I cant see the illness as an illness/
just don’t belong’’; ‘‘Social isolation’’; ‘‘Lies, manip- problem but normal for me now’’; ‘‘I haven’t
ulation to maintain habit’’; ‘‘It’s made my social life achieved as much as I should- I would like a PhD. I
a bit difficult – few of my friends that know me can’t concentrate as much as I should be able to’’;
with eating problems ever invite me over for a ‘‘Activities become mindless rituals with no value
meal. There are some friends who still make me or worth’’; ‘‘The anorexia has taken away all my
really nervous and I sometimes can’t eat at all confidence and self esteem. I’m never good
around them or end up bursting into tears because enough. I’ll never reach my best’’; ‘‘You’re erasing
they try to force me or tell me off and I feel dread- my memory as well as my mind—suspending my
ful’’; ‘‘I like people and it has isolated me because I aspirations, muddling my wishes and interfering
can’t go into most social situations easily. I don’t with my spirit. You’re sucking me out. You quash
like being single but I don’t stand much chance of my dreams.’’ ‘‘The hate sometimes is excruciating
anything else’’; ‘‘Creates loneliness isolation. Diffi- like a pain you want to leave, only this desire and
cult to do anything that breaks routines e.g. visit control slots itself into every corner of my mind
from family, friends, work, college course etc’’; and I have allowed it to run parallel with my every-
‘‘Difficult to feel comfortable around people and in day life. THE CELL I HAVE BUILT FOR MYSELF!!’’
situations. Brings peoples negative attention ‘‘You get angry when I tell you and come back with
towards me’’; ‘‘Makes relationships almost impossi- a vengeance. When I cry and really need to, when I
ble to make and maintain’’; ‘‘At first the anorexia write and really want to. You stop me from believ-
just controlled food but over the years it has gradu- ing—succeeding in mid-sentence’’; ‘‘Life less
ally seeped into all other aspects of my life taking meaning, more wooden, no passion, joy, ups,
my life away piece by piece. It has taken away and downs. Everyday activities become a chore and irri-
is controlling not only food but friends, family, ca- tant e.g. shaving showering, washing clothes.’’
reer interests, self-worth. . .basically I went from
having a life to have nothing but you in my life. You Physical Health/Appearance. ‘‘Sleeplessness’’; ‘‘Feel
make me feel sad and depressed, worthless, useless cold’’; ‘‘Can’t sleep properly. Become irritable and
and lonely’’; ‘‘Makes me feel unsociable, unable to annoyed and constantly ‘talk’ in my head’’; ‘‘I can-
eat with others. Makes me want to hide, a freak, not control my weight loss below a certain weight
inflexible, trapped’’; ‘‘Initially you seemed like a and become ill’’; ‘‘I feel ashamed of being a slave to
friend and although you keep me company and something so crazy. I have many physical problems
stop me from feeling alone you have managed to because of chronic low weight. Although I don’t see
rid the few people whom I did have. The anorexia myself objectively I know I look awful and that
has taken me out of the ‘world’ all alone and into matters to me. I can’t buy clothes easily’’; ‘‘Makes
its own world where there is no one but me’’; ‘‘It me feel ill, thirsty, tired and anxious’’; ‘‘You make
blocks some true feelings and relationships and I me frail and fragile. You make me think too early
don’t experience as much as I could’’; ‘‘I now think that I’m too late. You provide me with sickness and
I don’t have any close friends because they all got a strong reminder that I can’t ever defend myself’’;
fed up with me’’; ‘‘I see life going on around me but ‘‘Out of touch with reality (without knowing it).’’
feel distanced, displaced from it.’’

654 International Journal of Eating Disorders 41:7 650–656 2008


OUTCOME IN SEVERE AND ENDURING EATING DISORDER (SEED-AN)

Conclusion ders in their impact on multiple domains of func-


tioning and in their requirement for complex and
This study found that a group of patients with long-term therapeutic interventions. The present
severe and enduring eating disorder (anorexia study provides support to this concept and sug-
nervosa) (SEED-AN) consistently scored similarly gests that comparisons can usefully be made
to severely depressed primary care patients in between SEED and chronic affective and psy-
subjective appraisal of quality of life. Consistent chotic disorders. The numbers in this pilot study
with this was a strong correlation between were too small for meaningful quantitative statis-
depressed mood and quality of life. In fact tical analysis. However, if 20% of cases of anorexia
depressed mood accounted for variance in scores develop chronic symptoms then 4 in 100,000
for quality of life better than either eating disorder females between 10 and 39 years may go on to de-
symptoms or BMI scores. The themes of intraper- velop chronic symptoms. This calls for a differen-
sonal avoidance and self-punishment/denial in tiated, specialist mental health service, which
the qualitative data fit with the poor WHOQOL- includes a rehabilitation focused as well as
100 psychological scores and high BDI scores. The an acute model, such as occurs in General Adult
study also found that some of the living skills of Psychiatry.
those with SEED-AN were as impaired as that of a
standardized community sample of patients with
schizophrenia. The participants with SEED-AN
scored highly for communication skills and References
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