Attitudes of Patients Toward the First
Psychotic Episode and the Start of Treatment
by Lieuwe de Haan, Bart Peters, Peter Dingemans,
Luuk Wouters, and Don Linszen
Abstract
Consecutively admitted patients with recent-onset
schizophrenia disorders (n = 56) were interviewed
about their awareness of mental disorder at first
occurrence of psychotic symptoms, their views about
the necessity of psychiatric treatment, their perception
of the role of others in initiating psychiatric treatment,
and suggestions they might have about getting treat-
ment started at an earlier point in time. About 57 per-
cent of the patients had at least some awareness of
having a mental disorder at onset of psychotic symp-
toms, and 61 percent of the sample believed psychi-
atric help was unnecessary prior to the start of psychi-
atric treatment. A majority of the patients (91%)
perceived others to be essential in initiating treatment.
Most patients (82%) thought that no change is needed
on the part of professional caregivers in order to facili-
tate early treatment. Some awareness of mental disor-
der at onset was related to a shorter duration of
untreated psychosis (DUP). Delaying treatment until
patients themselves become aware of the need for
treatment may enlarge DUP.
Keywords: First episode schizophrenia, illness
onset, attitudes of patients, insight, duration of
untreated psychosis.
Schizophrenia Bulletin, 28(3):431-442,2002.
The time between the onset of a first psychotic episode
and first psychiatric treatment can be considerable, and
long duration of untreated psychosis (DUP) has been
found to be associated with several aspects of outcome:
longer time until remission, less remission (Loebel et al.
1992), more psychotic relapse (Crow et al. 1986), worse
global functioning, and more severe psychopathology at
12-month followup (McGorry et al. 1996).
However, several studies found no association
between DUP and long-term clinical outcome (Linszen et
al. 1998; Craig et al. 2000; de Haan et al. 2000), and DUP
431
may be associated with prognostic factors such as insidi-
ous onset (Davidson and McGlashan 1997), premorbid
functioning, and prominent negative symptoms (Norman
and Malla 2001). Nevertheless, shortening DUP reduces
unnecessary suffering and may reduce direct negative con-
sequences of a psychotic episode. This alone makes reduc-
ing DUP clinically relevant. It is possible but not yet
proven that reducing DUP improves the prognosis of psy-
chotic disorders. In order to develop strategies to reduce
DUP, it is important to know what factors contribute to
treatment delay. Causes of this delay may have to do with
the patient, the social environment, or professional ser-
vices.
There are indications that patient delay is an impor-
tant factor determining DUP (Helgason 1990). Treatment
delay is critically dependent upon illness recognition and
the perceptions that individual consumers have of mental
health services (Lincoln and McGorry 1999). This article
focuses on patient delay.
Lincoln and McGorry (1995) reviewed factors influ-
encing help-seeking behavior and concluded that patient
delay may be related to gender, age, type of problem, opin-
ions on mental health professionals, homelessness, and
comorbidity such as substance abuse, low IQ, and person-
ality disorder. Apart from the factors mentioned above,
specific factors related to the psychotic disorder are impor-
tant as well. Patients with psychotic symptoms are often
not aware of having an illness that needs treatment
(Amador et al. 1991). In particular, patients with paranoid
symptoms and those withdrawing from social contact
receive psychiatric treatment only after a considerable
period of time (Gift et al. 1981; McGorry et al. 1996).
Moreover, patients in their first episode of psychosis are
aware that mentally ill persons are negatively valued and
discriminated against (Fink and Tasman 1992). Helgason
(1990) found that, in a group of 52 patients with schizo-
Send reprint requests to Dr. L. de Haan, Academic Medical Center,
University of Amsterdam, Department of Psychiatry, Postbox 22700,
1100 DE Amsterdam, the Netherlands; e-mail: l.dehaan@amc.uva.nl.
Schizophrenia Bulletin, Vol. 28, No. 3, 2002
phrenia who were advised to enter the hospital, 24 refused
admission on initial presentation. Males tended to refuse
admission more often than did females.
Lincoln et al. (1998) examined help-seeking behavior
of young people during a first psychotic episode. Pathways
to care were highly variable. Where an individual's own
efforts to seek early help failed, the role of relatives and
others was subsequently vital. Patients' attribution of their
first symptoms is not addressed in this study. Lincoln and
McGorry (1999) have given an overview of clinical and
consumer perspectives involved in the pathway to care in
early psychosis. They state that personal narratives of
patients are necessary to understand the barriers to imple-
menting early treatment.
Recently, Moller and Husby (2000) explored the sub-
jective prodromal experiences of 19 first episode DSM-IV
(APA 1994) schizophrenia patients. Patients reported seri-
ous difficulties interpreting and talking about prodromal
experiences at the time they occurred, causing delayed
identification. Moller and Husby proposed two core
dimensions of subjective prodromal experiences: "distur-
bance of perception of self and "extreme preoccupation
by and withdrawal to overvalued ideas." Moller and
Husby did not focus on the attitudes of patients toward the
first psychotic episode.
Knowledge of attitudes of patients toward their illness
prior to psychiatric treatment and toward the start of treat-
ment is essential for the development of interventions for
reducing DUP.
In the present study, consecutively admitted patients
with recent-onset schizophrenia disorders were inter-
viewed about their awareness of mental disorder (views
about the nature of their symptoms at first occurrence of
psychotic symptoms and views about the necessity of psy-
chiatric treatment); their perception of the role of others in
initiating psychiatric treatment; and suggestions they
might have about getting treatment started at an earlier
point in time. We also investigated the relation between
awareness of mental disorder and DUP.
Methods
Subjects. Inclusion criteria for this study were that patients
should be able and willing to give written informed consent,
have a diagnosis of recent-onset schizophrenia or a related
disorder according to DSM-IV, be between 16 and 26 years
of age, and be able to understand and speak Dutch. The
patients were interviewed after stabilization of the clinical
condition had occurred. Stabilization is defined as the
moment at which the type and dose of the antipsychotic
medication had not been changed for a period of 6 weeks.
Exclusion criteria were diagnosis of a primary alcohol- or
drug-related psychosis, a demonstrable brain or neurological
432
L. de Haan et al.
or endocrine disease, or mental retardation. Clinical dis-
charge diagnoses according to DSM-IV were made with the
use of all available diagnostic information (systematic inter-
views of patients and parents and previous medical records)
by two clinical psychiatrists and two residents, after which
the diagnoses were reviewed by a research psychologist and
a research psychiatrist (Longitudinal Expert Assessment of
Diagnosis procedure [LEAD], Spitzer and Williams 1985).
Fifty-six participants were selected from 63 patients
who were consecutively admitted to the adolescent clinic of
the psychiatric center of the Academic Medical Center, Ams-
terdam. Seven individuals were excluded from participation
in the study because they did not consent (2), were unable to
understand questions (1), or withdrew from treatment before
they could be interviewed (4). Patient characteristics are
described in table 1. Comparison of characteristics of the
participants and nonrespondents revealed a difference in
diagnosis but no other significant differences (two nonre-
spondents had a diagnosis of schizophreniform disorder ver-
sus one respondent with that diagnosis).
Most patients were diagnosed as having schizophrenia
(89.3%). A majority (78%) had used drugs prior to their first
contact with a psychiatric caregiver. Thirty-two percent had
used only cannabis, and 46 percent had used cannabis or
other street drugs at some point in their lives, the latter
mostly on an incidental basis. In the year prior to the first
psychiatric treatment, 42 percent used cannabis on only an
incidental basis, 24 percent of the patients used cannabis
once a week, and 12 percent used cannabis more than once a
week. Three percent of the patients used hard drugs more
than once a month in the year preceding the first psychiatric
treatment. Patients started using street drugs 2.1 years
(mean) before the onset of psychotic symptoms.
The time between onset of first psychotic symptoms
and administration of the questionnaire was on average 2
years (standard deviation [SD] 1.8).
Procedure. First, medical records were reviewed to obtain
demographic information and information about whether
the hospitalization was compulsory. At admission, all
patients and parents were asked independently about DUP.
Second, psychopathology was measured with the Positive
and Negative Syndrome Scale (PANSS, Kay et al. 1987) by
clinically trained raters at admission. Third, at stabilization
of the patients the questionnaire was administered in an
interview by a research staff member who was not involved
in the treatment and was not aware of demographic or clini-
cal variables as assessed at admission. At that time we again
asked patients about DUP.
DUP was defined as the time between the start of psy-
chotic symptoms (over a period of at least 1 week) and the
start of treatment with antipsychotic medication. Psychotic
symptoms were defined according to those in the PANSS.
The start of treatment with antipsychotics is defined as the
Attitudes of Patients
Table 1. Patient characteristics of respondents
(n = 56)
Diagnosis
Schizophrenia
Schizoaffective disorder
Schizophreniform disorder
Age
Mean age at admission
Age at onset of psychosis
Gender
Male
Female
Drug abuse before treatment
No use of street drugs
Cannabis
Cannabis and hard drugs
Psychiatric admissions in the family
Schizophrenia in the family
Compulsory admission
Education: Highest achieved level
Low professional training
High school
Middle professional training
Bachelor
Master
Education: Status of highest
achieved level
Dropped out
Presently pursuing
Graduated
Education: Father/mother
Low professional training
High school
Middle professional training
Bachelor
Master
Duration of untreated psychosis
< 6 mos
> 6 mos
Psychopathology rating at admission
Mean PANSS total score (SD)
Mean PANSS positive
subscale score (SD)
Mean PANSS negative
subscale score (SD)
Note.—PANSS = Positive and Negative Syndrome Scale;
SD = standard deviation. Rounding has affected totals.
Schizophrenia Bulletin, Vol. 28, No. 3, 2002
moment from which a minimum of 2 mg haloperidol
equivalent was prescribed for a period of at least 1 month.
To determine DUP, the duration according to the
Respondents
patient and according to the parents during the first diag-
n (%)
nostic intervention at admission, as well as the duration
according to the patient at the time the questionnaire was
50 (89.3) administered, were independently assessed. We supposed
5 (8.9) the monthly DUP measure to be unreliable. We therefore
1(1.8) divided DUP into two categories: less than 6 months and 6
months or longer. When patients' three DUP values did not
19.9 years agree, two researchers (L.H. and B.P.) who were blind to
the patients' answers to the questions and other patient
28 (50.0) data examined the admission reports and medical corre-
28 (50.0) spondence and used direct and indirect indications to
assign these patients to the short or long DUP group.
48 (85.7)
8(14.3) Questionnaire. We asked patients 13 questions. Six
questions concerned awareness of mental disorder:
12(21.4) 1. What did you think was the matter when you experi-
18(32.1) enced psychotic symptoms for the first time?
26 (46.4) 2. Did you think you needed psychiatric treatment?
11 (19.6) 3. When did you think this for the first time?
14(25.0) 4. If you thought you needed psychiatric help, for what
9(16.1) reason did you think such treatment was necessary?
5. Just prior to your first encounter with a psychiatrist,
6(10.7) how were you feeling about going to a psychiatrist for
25 (42.9) the first time?
10(17.9) 6. Just prior to your first use of antipsychotic medication,
7(12.5) how were you feeling about using antipsychotic med-
8(14.3) ication for the first time?
The definition of awareness of mental disorder we
used is in accordance with the Present State Examina-
37 (64.3) tion (PSE) insight items into psychotic symptoms
11 (19.6) (David et al. 1995) and with the items of the Scale to
8(14.3)
Assess Unawareness of Mental Disorder (Amador et
al. 1993).
11/14(19.6/25.0) Six questions concerned patients' perception of the
2/4(3.6/7.1) role of others in initiating psychiatric treatment and
8/10(14.3/17.9)
patients' help-seeking behavior:
10/15(17.9/26.8)
14/1 (25.0/1.8) 7. Did you tell anyone about these psychotic symptoms
or experiences?
8. Whom did you tell first?
27 (48.2)
9. If you didn't tell anyone about these symptoms or
29(51.8)
experiences, why not?
10. Did others contribute to your getting treatment?
81.8(18.4)
11. How did they contribute to initiating treatment?
12. How did you feel about the contribution of others to
19.0(7.1)
the start of the first psychiatric treatment?
One question concerned suggestions patients might
22.1 (6.9)
have about getting treatment started earlier:
13. Do you have any advice or suggestions for caregivers
on how they could facilitate an early start of treat-
ment?
433
Schizophrenia Bulletin, Vol. 28, No. 3, 2002
Data Analysis. Three typical cases are presented, illus-
trating patients' attitudes toward their first psychotic
episode and the start of treatment and how these are
related to DUP and to the involvement of others in initiat-
ing treatment. Descriptive information obtained from the
questionnaire is presented. For the relationship between
awareness of illness and DUP, subjects were divided into
the following categories based on the responses to the
questionnaire: (1) no awareness, (2) some awareness, and
(3) full awareness (according to Amador et al. 1993). We
used univariate analysis to study the association between
attitudes of patients toward the first psychotic episode and
the start of treatment, and DUP, occurrence of compul-
sory admission, and PANSS score at admission. We used
a survival curve to illustrate time relations.
Results
Case 1 (No Awareness of Mental Disorder at Onset).
At the age of 18 Steve heard voices for the first time. He
thought a sect had given him the ability to hear the voices
of others who were not present. The voices ordered him
to keep them a secret. He did not want psychiatric help
because he did not think he had a psychiatric problem.
His parents must have noticed that he avoided contact
with others. In retrospect, Steve thinks they probably
related this to the fact that he had been convicted of
assaulting a girl at the age of 16. At that time Steve was
not psychotic.
During the several months after he heard the voices
for the first time, he became anxious and paranoid and
spent most of his time in his room. Three months after first
hearing the voices, he no longer trusted his father. When
his father criticized him for not wanting to go to school
anymore, Steve became aggressive. He broke a door and a
television set. His parents then called the family doctor,
who brought the police and a psychiatrist of the crisis ser-
vice, who arranged a compulsory admission with forced
medication. This was a terrible experience for Steve. He
trusted no one anymore, was very frightened that he would
be poisoned, and thought that the doctors were part of the
conspiracy—especially when he experienced muscle
cramps. His DUP was 3 months. Steve thinks that in his
case neither the caregivers nor his parents could have done
anything to start treatment earlier. He also does not think it
would have helped if he had known more about psychotic
symptoms. His acoustic hallucinations and delusions were
so powerful that he did not believe anything else.
Case 2 (Some Awareness of Mental Disorder at Onset).
At the age of 20 John started to experience difficulties
thinking logically. His concentration was poor, and he
often could not understand clearly what others meant. He
434
L. de Haan et al.
thought they were keeping something from him, and
because this made him tense, he withdrew socially. After
he isolated himself, his problems only grew worse. John
became convinced that others (roommates and later his
parents) could influence his capacity to think. Although
he did not doubt this psychotic conviction, he thought on
the other hand that something was the matter with the
way he was thinking. Two months after the start of his
problems he told a friend he could not think straight any-
more, but he did not tell about his conviction that his
roommates and his parents were causing these problems.
His friend advised him to contact a student counselor.
John did not follow this advice because he did not expect
a student counselor to be able to help him. After 4 months
he dropped out of college and went abroad to flee the
influence of his roommates and parents.
He had little energy and paid no attention to his
appearance. Because his money ran out, he returned to his
parents. His parents advised him to see a psychiatrist,
which he refused to do. His parents gave him money, and
again he went abroad. He became more and more
depressed and anxious and often thought of suicide. Partly
because his friend insisted that he see a psychiatrist, he
considered seeking psychiatric help. Eleven months after
the onset of his psychosis John went to see his family doc-
tor, who referred him to a psychiatrist. John wanted his
mental functioning assessed but had no use for talks and
did not think medication was a suitable treatment. John
did not believe that a different approach by his caregivers
would have led to an earlier start of treatment. He consid-
ered seeking help only after a considerable period of time
because the problems did not diminish and he became pro-
gressively more depressed.
Case 3 (Full Awareness of Mental Disorder at Onset).
When Susan was 22 years old she heard voices for the first
time. She realized these were the symptoms of a psy-
chosis. It was very frightening, and she suspected it was
because she used cannabis. She was ashamed of it and
feared that others would think she was "crazy." Because
the voices became louder and were present even when she
had not used cannabis, she became worried. Susan was
unable to continue her education because she was dis-
tracted by the voices talking about her. She avoided con-
tact with fellow students, neglected her appearance, and
spent a lot of time lying on her bed. She did not have the
energy to seek help, and although she felt anxious and
tense, she cared little about things going wrong. Because
her mother was always very worried and she suspected
that her parents would become angry if she told them she
had been using cannabis, it took another month before she
told her mother she had been hearing voices for some time
and that this was the reason she was failing in her studies.
Attitudes of Patients
Her mother accompanied her to the family doctor,
who advised her to stop using cannabis. She stopped using
cannabis, but the voices intensified. After 2 months she
was referred to a psychiatrist. Psychotherapy 2 years ear-
lier for depressiveness and eating problems had proved
helpful for her, and this led her to expect improvement
from psychiatric help.
She was afraid to use medication because she feared
becoming drowsy; she already had little energy. Her DUP
was 5 months. Susan thinks that help might have come
earlier if the family doctor had persisted more in his ques-
tions.
Awareness of Mental Disorder. Frequency of answers
to the question "What did you think was the matter when
you experienced psychotic symptoms for the first time?"
and grouping into three categories of awareness of mental
disorder at first occurrence of psychotic symptoms are
given in table 2. When asked "Did you think you needed
psychiatric care?" and "When did you think this for the
first time?" 61 percent of the interviewed patients replied
that they did not think psychiatric treatment was neces-
sary when their treatment was initiated. Of the 22 patients
(39%) who did realize that there was a need for treatment
before their actual treatment started, 9 patients reported
that their psychosis worsened or lasted too long, 8
patients thought their depression or anxiety needed treat-
ment, 3 patients were aware of having a psychiatric con-
dition, and 2 patients sought treatment for their somatic
complaints. Patients' attitudes toward psychiatric treat-
ment and antipsychotics shortly before the start of treat-
ment are given in table 3. On average, it took 8 months
after the onset of psychosis before patients were willing
to accept medication.
Table 2. Awareness of mental disorder: Patients' views on the nature of their symptoms at first
occurrence of psychotic symptoms (n = 56)
No awareness of mental disorder at onset
Was fully convinced that experiences were real
Thought he or she was entirely in control of the problems
Denied ever having been psychotic
Thought the symptoms would stop of their own accord
Some awareness of mental disorder at onset
Thought something strange and unknown was affecting mental functioning
Thought the only problems were anxiety and gloominess
Thought the psychosis was solely drug induced
Was convinced that psychotic experiences were real but admitted there was
something wrong with his or her mental functioning
Total awareness of mental disorder at onset: Realized he or she had a psychotic disorder
Note.—Rounding has affected totals.
435
Schizophrenia Bulletin, Vol. 28, No. 3, 2002
Patients' perception of the role of others in initiating
psychiatric treatment. Half of the patients told their rel-
atives or friends about their psychotic symptoms in the
first 10 weeks after onset of psychosis. Proportion of
patients who did not tell relatives or friends about psy-
chotic symptoms to time after onset of psychosis is shown
in figure 1. Patients' perceptions of the role of others in
initiating psychiatric treatment are shown in table 4.
Suggestions given by patients about getting treatment
started earlier. Nearly 43 percent of patients gave sug-
gestions regarding earlier treatment. Most of them (14
patients, 25% of the total group) thought they themselves
were responsible for the treatment delay. Five patients
(9%) thought more information and publicity about pro-
dromes of psychosis and treatment options would help get
treatment started earlier. Five patients (9%) thought pro-
fessionals should ask more in-depth questions and act
faster to arrange hospitalization.
DUP. DUP measured in months according to patients at
the moment of stabilization correlated rather poorly with
that of the patient and that of the parents at admission:
0.24 and 0.42 (Pearson's correlation), respectively; DUP
according to patients and DUP according to parents at
admission correlated well (0.83). For 10 of the 56 patients
there was no correspondence between the three values of
DUP that would allow for scoring in the short or long
DUP group. After medical record review, as mentioned
above, 48 percent of patients were categorized in the short
DUP group and 52 percent in the long DUP group. After
this procedure 48 percent of the patients were categorized
in the short DUP group and 52 percent in the long DUP
group (see tables 5 and 6).
24 (43)
17 (30)
3 (5)
3 (5)
1 (2)
27 (48)
11 (20)
7 (13)
5 (9)
4 (7)
5 (9)
Schizophrenia Bulletin, Vol. 28, No. 3, 2002 L. de Haan et al.

Table 3. Awareness of mental disorder: Patients' views in the week prior to start of psychiatric
treatment (n = 56)

Patients' attitude about psychiatric treatment shortly before the start of psychiatric treatment
Opposed psychiatric treatment 27 (48)
Did not think psychiatric treatment was necessary 13(23)
Was afraid of stigma attached to being under psychiatric treatment 5(9)
Was wary of psychiatric care staff 3(5)
Felt that help had been forced on him or her 2(4)
Was afraid of care staff 2(4)
Deemed psychiatric treatment unnecessary but admitted needing practical help 2(4)
Thought favorably of psychiatric treatment 29 (52)
Thought that psychiatric treatment was a necessary and good thing 16(29)
Thought favorably about psychiatric treatment but had reservations about
accepting treatment 9(16)
Had good prior experiences with psychiatric treatment 3(5)
Wanted to talk about problems with psychiatric professional 1(2)
Patients' attitude about the use of antipsychotics shortly before the start of psychiatric treatment
Opposed medication prior to treatment 24 (43)
Denied having psychiatric disorder 8(14)
Had strong reservations about taking medication 7(13)
Was afraid of side effects 4(7)
Aversion to medication caused by psychotic delusions 3(5)
Did not think medication was appropriate treatment 2(4)
Accepted possibility of medication prior to treatment 29 (52)
Hoped there would be a positive effect 18(32)
Had no qualms about taking medication 8(14)
Trusted psychiatrist's decision about prescribing medication 3(5)
Note.—Rounding has affected totals.

Figure 1. Proportion of patients who did not tell relatives or friends about psychotic symptoms to
time after onset of psychosis
First time patient told relatives/friends about psychotic
symptoms
q
oq
cq
<<*
CNJ
p

50 100 150 200 250 300

Time (in weeks) after onset of
psychosis

436
Attitudes of Patients Schizophrenia Bulletin, Vol. 28, No. 3, 2002

Table 4. Patients' perception of the role of others in initiating psychiatric treatment (n = 56)

Told relatives or friends about the psychotic symptoms 36 (64)

Person whom patient first told about psychotic symptoms
Mother/father 20/2 (36/4)
Girlfriend/boyfriend 5/5 (9/9)
Sister/brother 2/2 (4/4)
Concealed psychotic symptoms from relatives or friends 19(34)
Reasons for concealing psychotic symptoms from others
Shame 6(11)
Thought he or she had to solve problems himself or herself 4(7)
Was under psychotic delusion that talking about it was forbidden 3(5)
Did not want to talk about problems 3(5)
Did not expect others would understand anyway 2(4)
Was afraid of the consequences of talking about it 1(2)
Others helped initiate psychiatric treatment 51 (91)
Persons whose role was most important in initiating treatment
Parents 45 (80)
Police officers 4(7)
Teachers 2(4)
How others helped initiate psychiatric treatment
Gave advice 24 (43)
Accompanied patient to a psychiatric professional 22 (39)
Arranged involuntary hospitalization 5(9)
Others did not help initiate psychiatric treatment 5(9)
Patients' attitude toward the role that others played in the initiation of psychiatric treatment
Felt resistance to the help given by others 27 (48)
Assented to the help given by others 24 (43)

Note.—Rounding has affected totals.

Relationship Between Patient Attitudes and DUP.
Patients with some awareness of psychosis at onset had
less often a DUP of 6 months or longer than patients with
no awareness of psychosis at onset and than patients with
total awareness of psychosis at onset (Pearson's chi-
square = 6.1,d/ = 1,/? = 0.013).
We also investigated the relationship between aware-
ness of mental disorder at onset and concealing psychotic
symptoms from others, role of others in initiating treat-
ment, compulsory admittance, believing psychiatric treat-
ment was necessary before it was started, acceptance of
psychiatric treatment, acceptance of medication, and com-
pliance with medication. No significant relationship was
found (table 7). Awareness of mental disorder at onset of
psychosis was also not related to sociodemographic char-
acteristics or use of drugs. The patients with no awareness
of mental disorder at onset had a lower mean PANSS total
score at admission (75.7) than the group with some or total
awareness of mental disorder at onset (86.3) (p < 0.05).
Difference in the mean severity of general psychopathol-
ogy as measured with the PANSS between patients with
no awareness of mental disorder at onset (37.9) and
patients with some or total awareness of mental disorder at
onset (43.1, p < 0.06) accounted for this relationship.
There was a trend between compulsory admission and a
DUP shorter than 6 months (table 8).
Before the start of psychiatric treatment, 22 patients
(39%) came to the conclusion that they needed psychiatric
help. These patients first recognized that they needed psychi-
atric treatment on average 9 months after onset of psychotic
symptoms; consequently, these patients significantly (p =
0.002, chi-square) more often than patients with no or full
awareness of mental disorder at onset had DUP equal to or
longer than 6 months. Patients with DUP longer than 1 year
became aware of the necessity of psychiatric treatment on
average 3 months after treatment started.
DUP was not related to the involvement of others in
the start of a first treatment or opinions beforehand on
treatment. DUP was not related to sociodemographic char-
acteristics or use of drugs. DUP was not related to severity

437
Schizophrenia Bulletin, Vol. 28, No. 3, 2002 L. de Haan et al.

Table 5. Duration of untreated psychosis Table 6. Duration of untreated psychosis

according to different sources (in months) for according to different sources (in months) for
patients who were categorized in the group with patients who were categorized in the group with
DUP shorter than 6 months DUP 6 months or longer

DUP DUP
according to DUP DUP according to DUP DUP
patients at according to according to patients at according to according to
stabilization of patients at parents at stabilization of patients at parents at
psychosis admission admission psychosis admission admission
3 0 1 24
3 3 0 42
4 4 1 4 12
0 1 36
0 1 2 6 12
0 4 5 2 10 8
0 5 5 3 4 7
1 1 6 10 9
1 1 6 36 48
1 1 7 14 14
1 1 9 12 18
1 1 1 9 6
1 1 1 9 8 8
1 1 1 9 16 12
1 2 10 8
1 2 3 10 9 9
1 5 5 11 6 10
1 7 1 24
1 8 13 28 24
4 2 4 17
4 3 1 18
5 5 1 18 29 29
5 5 4 22 21
7 1 36
7 1 1 42 12 23
9 1 1 50
14 5 6 55 17 19
79
Note.—DUP = duration of untreated psychosis. 84

Note.—DUP = duration of untreated psychosis.

of positive or negative symptoms at admission as mea-
sured with the PANSS.
The correlation between awareness of mental disorder
at onset and DUP was 0.33, p = 0.006. The correlation
between compulsory admission and DUP was 0.25, p =
0.03. The proportion of the likelihood of a shorter DUP is
for 10.9 percent determined by awareness of mental disor-
der at onset and for 6.7 percent by compulsory admission.
Discussion
Our study has limitations. First, our study concerns
recently admitted young, and for the most part, male
patients, the majority of whom have used drugs at some
point in time. Gender and age influence help-seeking
behavior (Boldero and Fallon 1995), and gender is related
to longer DUP (Larsen et al. 1996) and to age at first
admission (Hafner et al. 1989). It is also known that drug
use can influence patients' views of the nature of their dis-
order. However, there are several factors that make the
influence of drug use on patients' views of their first psy-
chotic symptoms less important in our study. Most of the
patients had used drugs for a considerable time before the
onset of the psychotic symptoms. There was no increase in
the use of drugs immediately prior to the onset of the first
psychotic symptoms, and only 9 percent of the patients
thought that the psychotic symptoms were caused solely
by drug use. Yet the above-mentioned characteristics of
our study population limit generalization of our findings to

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Attitudes of Patients Schizophrenia Bulletin, Vol. 28, No. 3, 2002

Table 7. Number of patients with no, some, or total awareness of mental disorder at onset who had
a DUP of 6 months or longer, concealed psychotic symptoms from others, were compulsorily
admitted, believed psychiatric treatment was necessary before the start of it, and were compliant with
medication (%)

Awareness of Mental Disorder at Onset

No (n = 24) Some (n = 27) Full (n = 5)
DUP 6 mos or longer 17(70.8) 9 (33.3)* 3 (60.0)
Concealed psychotic symptoms from others 8 (33.3) 9 (33.3) 2 (40.0)
Shame 2 (8.3) 3(11.1) 1 (20.0)
Thought he or she had to solve problems himself or herself 1 (4.2) 3(11.1) 0
Was under psychotic delusion that talking about it was forbidden 3(12.5) 0 0
Did not want to talk about problems 1 (4.2) 1 (3.7) 1(20.0)
Did not expect others would understand anyway 0 2 (7.4) 0
Was afraid of the consequences of talking about it 1 (4.2) 0 0
Others helped initiate psychiatric treatment 22 (91.7) 25 (92.6) 4 (80.0)
Compulsory admission 2 (8.3) 6 (22.2) 1 (20.0)
Believed psychiatric treatment was necessary before the start of it 10(41.7) 10(37.0) 2 (40.0)
Opposed medication prior to treatment 12(50.0) 10(37.0) 2 (40.0)
Compliant with medication 19(79.2) 20 (74.0) 4 (80.0)

Note.—DUP = duration of untreated psychosis.

* Patients with some awareness of mental disorder less often had a DUP longer than 6 months, p = 0.013.

Table 8. Number of patients voluntarily admitted and of patients compulsorily admitted who had a DUP
of 6 months or longer, believed psychiatric treatment was necessary before the start of it, and were
compliant with medication (%)

Voluntarily admitted Compulsorily admitted

(n = 47) (n = 9)
DUP 6 mos or longer 27 (57.4) 2 (22.2) 0.053
Believed psychiatric treatment was 21 (44.7) 1(11.1) 0.059
necessary before the start of it
Compliant with medication 37 (78.7) 6 (66.6)

Note.—DUP = duration of untreated psychosis.

all patients with a first psychotic episode. It is necessary to
study the attitudes of women, older patients, nonadmitted
patients, and patients who have never received psychiatric
treatment.
Second, our study focused only on attitudes of
patients toward the start of psychiatric treatment and the
first psychosis. Factors relating to family delay or doctor
delay are not discussed in this article. A description of the
complexity of the pathway to care (Goldberg and Huxley
1980) is also beyond the scope of this study. Further
research into the interaction of attitudes and behaviors of
patients, family members, and caregivers is necessary.
This interaction determines the manner and time frame in
which treatment of a first psychotic episode comes about.
The start of a psychiatric treatment is often the result of
the interventions of different professionals. This also can
be gathered from the fact that awareness of mental disor-
der at onset and involuntary admission explain only a
small part of the variance in DUP. Consequently, other fac-
tors not investigated in this study must play an important
role.
Third, we did not investigate the attitudes of patients
toward the prepsychotic phase. Attitudes of patients
toward the prepsychotic phase were recently described by
Moller and Husby (2000).
Fourth, the retrospective design introduces the risk
that the answers of the patients were influenced by mem-
ory disorders, later experiences, or current psychiatric con-
dition. Patients were, however, interviewed in a stable
phase to reduce the latter bias as much as possible. Mea-

439
Schizophrenia Bulletin, Vol. 28, No. 3, 2002
suring insight or awareness retrospectively is particularly
problematic. Therefore, we chose to measure aspects of
insight or awareness that could be laid before the patient
in a few, simple questions. Prospective research would not
have many of the above-mentioned disadvantages, but
none is available, nor is there likely to be in the future.
Our study shows that many patients realize that something
is wrong when the psychosis starts, but they often under-
estimate the seriousness of the symptoms. They might be
deterred by the widespread negative stereotypes of psychi-
atric diagnosis and psychiatric care (Fink and Tasman
1992). This ambivalence is in keeping with the conceptu-
alization of insight as a multidimensional construct influ-
enced by social and cultural factors. Lack of insight has
been associated with severe psychopathology and delay in
treatment (Amador et al. 1991; Loebel et al. 1992). We
found an indication that severity of general psychopathol-
ogy as measured with the PANSS is related to greater
awareness of mental disorder at onset, which suggests that
severity of nonpsychotic symptoms plays a part in
patients' recognition of illness. Others (especially parents)
are frequently needed for actually bringing about treat-
ment, according to the patients. This finding is in accor-
dance with what Johnstone et al. (1986) and Helgason
(1990) found and emphasizes that family members are
critical in initiating treatment. The finding that half the
patients were willing to accept medication 8 months after
the onset of psychotic symptoms is remarkable consider-
ing the great resistance in the general population to treat-
ment with psychopharmaca (Angermeyer and
Matschinger 1996). The willingness to use medication
may be related to the seriousness of the symptoms. Other
possible explanations for the reported willingness may be
that there is a tendency to give a socially desirable answer
or that it is related to later positive experiences with the
use of antipsychotics.
Most of the patients who gave suggestions about an
earlier start of treatment thought that they themselves had
caused the treatment delay. This finding could be viewed
as a warning against including the possible prognostic
influence of DUP in patient education, because it may
induce guilt feelings in patients.
In this study half of the patients had a DUP equal to or
longer than 6 months. This finding is in line with the
results of other studies (Johnstone et al. 1986; Helgason
1990; Haas and Sweeney 1992; Loebel et al. 1992;
McGorry and Singh 1995) and is in contrast to an earlier
study by our group (Linszen et al. 1998). Because of the
retrospective nature of the assessment of DUP, this assess-
ment should be viewed as a rough estimate. The poor cor-
relation between DUP measured at different points in time
raises the question of the reliability of a detailed assess-
ment of DUP. We hypothesize that problems with long-
440
L. de Haan et al.
term memory and lack of insight of patients (and to a
lesser extent also of family members) account for the poor
correlation between different reports of DUP. We
increased the reliability (at the expense of detailed assess-
ment) of the DUP measure by dividing DUP into two cate-
gories—less than 6 months, and 6 months or longer—and
by using direct and indirect indications from admission
reports and medical correspondence to categorize DUP.
Having some awareness of mental disorder at the
onset of symptoms was related to shorter DUP. Those with
full awareness of their psychotic disorder at onset were
not more likely to have short DUP. An explanation of this
unexpected finding could be that awareness of mental dis-
order does not necessarily coincide with awareness of
needing psychiatric help. Indeed, patients who realized at
onset of the psychotic disorder that they suffered from a
mental disorder often did not find psychiatric help neces-
sary. We suppose that the critical issue is how long it takes
before others around the patient become aware of the
patients' psychiatric problems. If patients are to some
extent aware of having a mental disorder, it might be eas-
ier for others to notice the psychiatric problems and to ini-
tiate treatment. On the other hand, having full awareness
of the mental disorder at onset could favor patients' ten-
dency to keep their problems a secret for a longer period
of time, which may be one of the reasons why full aware-
ness at onset is not related to DUP. It is also possible that
dichotomizing DUP obscured a relationship between full
awareness and DUP measured in months.
Delaying implementation of treatment until patients
are themselves aware of the need for treatment lengthens
DUP. Patients with DUP longer than 1 year became aware
of the necessity for psychiatric treatment only months
after it started. From a consumer perspective, delay seems
to be a process characterized by ambivalence, contradic-
tion, and resistance (Lincoln and McGorry 1999).
Surprisingly, having others contribute to the start of
the first treatment is not related to DUP. This probably has
to do with the fact that for almost all patients (91%) others
contributed to the start of the first treatment, according to
the patients. The crucial factor is possibly the lapse of
time before psychotic symptoms of the patient become
clear to others. We found a trend between involuntary
admission and shorter DUP. This finding does not coin-
cide with the finding of Johnstone et al. (1986) and
Humphreys et al. (1992) that longer DUP is related to
more compulsory admissions. A possible factor here is the
high density of health care facilities in the Netherlands,
which allows for a relatively fast response to a potentially
dangerous psychotic state. The finding of a relation
between some awareness of having a mental disorder at
onset and short DUP seems at odds with the trend between
involuntary admission and short DUP. An explanation for
Attitudes of Patients
these findings may be that there are two different factors
influencing DUP in different subgroups of patients. On the
one hand, some awareness of mental disorder at onset of
psychosis is related to short DUP in a voluntarily admitted
group. On the other hand, compulsory admission may
shorten DUP in a subgroup with dangerous behavior.
Clearly, there is an area of tension between patients
who tend to avoid treatment and clinicians who try to start
treatment as soon as possible. If caregivers take a wait-
and-see approach, treatment delay is likely. Too direct an
approach, however, can endanger the possibility of achiev-
ing a therapeutic relationship and thus increase the risk of
treatment delay—unless there are grounds for compulsory
treatment. Patients experience compulsory admission,
however, as a major violation of their autonomy.
Contrary to Verdoux et al. (1998), no relation was found
between level of education of the patient or psychiatric fam-
ily history and DUP. Also, there was no relation between
DUP and age, gender (Larsen et al. 1996), or drug abuse.
This lack of relation might be explained by the small varia-
tion of age, gender, and drug abuse in this population.
Patients' attitudes toward the first psychotic symp-
toms and psychiatric treatment are very diverse. The cases
presented here illustrate that these attitudes are related to
treatment delay and the patients' expectations regarding
treatment. The degree to which the treatment corresponds
with the expectations of the patient is related to the work-
ing alliance and probably to the effectiveness of the treat-
ment (Vervaeke and Vertommen 1993). This means that
consideration of patients' views is necessary for establish-
ing a therapeutic relationship.
In summary, although most patients are at least partly
aware of having a mental disorder at onset of the psychotic
symptoms, this awareness often does not involve the
awareness of needing psychiatric help. Because of the
resistance of many patients to help, family members are
almost always needed for initiating treatment. Delaying
implementation of treatment until patients are themselves
aware of the need for treatment might enlarge DUP.
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Acknowledgments
The authors are grateful to Patrick D. McGorry for his
helpful comments on an earlier draft of this article.
The Authors
Lieuwe de Haan, M.D., Ph.D., is Staff Psychiatrist at the
Adolescent Clinic, Academic Medical Center, Amsterdam,
The Netherlands; Bart Peters is medical student, Univer-
sity of Amsterdam, Amsterdam, The Netherlands; Peter
Dingemans, Ph.D., is Associate Professor of Psychology,
University of Amsterdam, and Clinical Research Psychol-
ogist, Academic Medical Center; Luuk Wouters is
Research Psychologist and Statistical Consultant, Aca-
demic Medical Center; and Don Linszen, M.D., Ph.D., is
Professor of Psychiatry and Head of the Adolescent Clinic,
Academic Medical Center.