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Psychopathology in amyotrophic lateral


sclerosis: a preliminary study with 27 ALS
patients. Amyotroph Lateral Scler Other Motor
Neuron Disord 6:221-225

ARTICLE in AMYOTROPHIC LATERAL SCLEROSIS · JANUARY 2006


DOI: 10.1080/14660820510037863 · Source: PubMed

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6 AUTHORS, INCLUDING:

Catherine Bungener Pierre-François Pradat


Université René Descartes - Paris 5 Assistance Publique – Hôpitaux de Paris
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Vincent Meininger
Assistance Publique – Hôpitaux de Paris
322 PUBLICATIONS 11,418 CITATIONS

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All in-text references underlined in blue are linked to publications on ResearchGate, Available from: Catherine Bungener
letting you access and read them immediately. Retrieved on: 09 April 2016
Amyotrophic Lateral Sclerosis. 2005; 6: 221–225

ORIGINAL ARTICLE

Psychopathology in amyotrophic lateral sclerosis: A preliminary study


with 27 ALS patients

CATHERINE BUNGENER1, AMBRE PIQUARD2, PIERRE-FRANÇOIS PRADAT2,


FRANÇOIS SALACHAS2, VINCENT MEININGER2 & LUCETTE LACOMBLEZ3
1
Laboratory of Clinical Psychology and Psychopathology, University Paris Descartes, Paris, 2Federation of Neurology
Mazarin, Salpêtrière Hospital, Paris, and 3Federation of Neurology Mazarin and Psychopharmacology Department,
Salpêtrière Hospital, Paris, France

Abstract
Considering the few studies published on the psychopathology of ALS patients, we carried out a preliminary study
evaluating depression, anxiety, emotional reactions and coping strategies in such patients. Twenty-seven ALS patients were
included and evaluated using a semi-structured interview, after which they were asked to complete a questionnaire. The
rater asessed the DSM-IV criteria for a major depressive episode, dysthymia and generalized anxiety, using the MADRS
scale for depression, the Covi anxiety scale and the Depressive Mood scale. Subsequently, patients completed the Ways of
Coping checklist. Patients were neither anxious nor depressed. Patients whose diagnosis was recent (less than six months)
presented greater emotional deficit. Patients younger than 50 years of age used problem focused strategies more frequently.
Those having received the diagnosis in the preceeding six months used emotion focused strategies significantly more
often.The absence of characterized depression and anxiety confirmed results of the literature. The significance of this study
is found in the observation of specific emotional reactions present in the first six months following diagnosis disclosure. The
results show that it is useful to continue the affective evaluation of these patients and to undertake longitudinal studies
starting at the time of diagnosis disclosure.

Key words: Amyotrophic lateral sclerosis, coping strategies, depression, emotional deficit, psychopathology

Introduction reported in many studies (2–4). Viet (1947) (5)


emphasized the unusually cheerful attitude towards
Amyotrophic lateral sclerosis (ALS) is a relentlessly a most disabling illness. Some authors noted the
progressive motor neuron disease described by presence of denial (6–9), but which was no higher
Charcot in 1870. ALS causes gradual paralysis, compared to other medically ill patients (10). For
respiratory failure and evolves toward death within Montgomery et al. (11) denial was a mask for
three to five years, with no treatment presently able despair and pessimism.
to stop the pathological process. Many studies reported very low scores of depres-
Very few studies have been devoted to the sion in ALS patients (9,12–15), or a mild depressive
psychopathological aspects of the disease, and the symptomatology (16,17) but some did not (18), and
comparisons between results are difficult for three depression was observed in between 44% and 75%
main reasons. First, the stages of patients’ evolutions of the subjects (19,20). Mc Donald et al. (16)
are not the same. Second, the methodologies used observed that the psychological status at the begin-
vary, and third, the assessment tools are never ning ot the study was related to the mortality rate.
specific to this disease. However, the first authors According to Rabkin et al. (9), depressive symptoms
who studied this disease mentioned the particular and psychological distress were not related to the
psychological profile of these patients. In 1925, van amount of time since diagnosis, the degree of dis-
Bogaert (1) observed affective lability, often followed ability, or the progression of the illness. However, as
by affective indifference, especially as the disease reported by Ganzini et al. (8), many patients with
progressed. Explosive laughter and crying have been ALS suffer, and their suffering is linked to pain and

Correspondence: C. Bungener, Laboratory of Clinical Psychology and Psychopathology, University Paris Descartes, 71 Bd Edouard Vaillant, F-92774
Boulogne Billancourt, France. E-mail: catherine.bungener@univ-paris5.fr

(Received 24 November 2004; accepted 21 March 2005)


ISSN 1466-0822 print/ISSN 1471-180X online # 2005 Taylor & Francis
DOI: 10.1080/14660820510037863
222 C. Bungener et al.

hopelessness. These authors insisted on the failure of depression, anxiety and emotional patterns in ALS
physicians to recognize and treat their patients’ pain patients, and to assess the adaptive mechanisms such
and depression. According to Plahuta et al. (21), as coping strategies.
hoplessness was predicted by an external locus of
control and a lack of meaning of life, but not by
socioeconomic, demographic, psychosocial (social Methods
support satisfaction and degree to which spiritual
Patients
belief helps to cope with ALS) variables, or variables
related to the length or the severity of illness. Patients hospitalized between September 1998 and
According to the literature, it appears that the November 2000 in the neurology department of
adaptive strategies of these patients are different Professor Meininger at the Salpêtrière hospital,
from those present in other neurological diseases, meeting the inclusion criteria, were included if they
but they have not been frequently evaluated in ALS. gave their informed consent. The patients were
As stated by Cousson et al. (22) the concept of hospitalized for 4 to 5 days to perform complete
coping is relatively recent in the domain of chronic examinations (magnetic resonance imaging, neuro-
diseases. Each individual, when faced with a stressful logical, neuropsychological and psychopathological
situation, elaborates specific adjustment strategies evaluations). The inclusion criterion was: having a
called coping strategies, including meaningful pat- diagnosis of definite or probable ALS (El Escorial
terns of cognitive, behavioural, emotional and criteria). The exclusion criteria were patients with
somatic responses. According to Lazarus et al. dysarthria and patients with cognitive impairment.
(1984) (23) ‘coping’ corresponds to the ‘‘ever All patients were seen in a semi-structured inter-
changing cognitive and behavioural efforts designed view lasting 45 min and performed by a trained
to deal with internal or external specific demands investigator. After the interview, the patients were
that are appraised as overcoming a person’s asked to complete a self-questionnaire.
resources". Coping strategies permit the subject to Twenty-seven patients (18 males and 9 females)
adapt to a situation, and especially to stressful were included. The mean age was 61.4¡12.6 years
situations, whether the subject modifies them or (range 29–80 years), and nine patients were younger
whether he modifies his cognitive-emotional state. than 50 years of age. The mean diagnosis duration
These coping mecanisms have been studied in was 12.8¡11.6 months (range 1–57 months), six
neurological diseases such as multiple sclerosis, for patients received their diagnosis within 6 months, 11
example (24–26). The stakes are high since emotion received it between 7 and 12 months, seven patients
and stress strongly influence psychosocial variables between 13 and 24 months, and three patients after
and are considered to evolve with the evolution of more than 24 months. Most of them (n523) had a
illness in this type of disease. This remains, none- spinal form of ALS. The mean ALS-FRS score was
theless, a subject of much debate (27) since causal 24¡7.6 points (range 8–35). All patients were
mechanisms of this relation are still unknown (28). treated with riluzole, 10 patients received a psycho-
In ALS, very few studies focused on coping tropic treatment; four received an antidepressant
mechanisms. Hecht et al. (29) observed that ALS treatment (fluoxetine, paroxetine or sertraline), four
patients did not request much information about received a benzodiazepine (stilnox, lexomyl, lysanxia
their disease, in contrast to other chronic diseases, or xanax) treatment and two received both an
and that their coping strategies were mainly ‘rumi- antidepressant and a benzodiazepine treatment.
nation’ and ‘solace through religion’. Young et al.
(30) reported that in 13 ALS patients who coped
exceptionally well, the use of cognitive reappraisal, Assessments
reframing and intellectual stimulation as coping
Psychopathology
mechanisms, associated with the development of
wisdom and interpersonal relationships, were the Major depression, dysthymia, and anxiety disorders
most important elements in ALS patients. Trail et al. were diagnosed according to DSM-IV criteria (32).
(31) compared three domains of stressors. They The Montgomery and Asberg depression rating
observed that patients and caregivers reported more scale (MADRS) (33), the Covi brief anxiety scale
stress in the existential and physical domains than in (34) and the Depressive Mood Scale (EHD) (35)
the psychosocial domain. were employed. The MADRS is a 10-item scale
Considering the studies published to date, which which evaluates the level of depression. Each item is
have reported specific psychological reactions in rated from 0 to 6, so the range is 0–60. A score above
ALS patients, and the relatively new interest in 20 points is considered to indicate a major depres-
coping mechanisms, we decided to assess these sive episode, a score under 10 points as no
variables in ALS patients. depression, and a score between 11 and 19 points
The objectives of the present study were thus to as depressive symptomatology or a mild depression.
describe the psychopathological disturbances such as The Covi brief anxiety scale is a 3-item scale, rated
Psychopathology in ALS 223

from 0 to 4 points, with a range of 0–12. The three 6.3¡4.5 (0–18). All scores are low, revealing only a
items evaluate observed behavioural anxiety, sub- mild degree of irritability.
jective anxiety (as reported by the subject) and the Concerning the coping strategies, the mean score
somatic complaints related to anxiety. A score above for the problem focused strategy was 28.6¡3.4 (20–
6 is considered as an indication of anxiety, under 3 33); for the emotion focused strategy, 23.1¡4.3 (12–
as no anxiety and a score between the two as mild 29); and for the social support-seeking coping style,
anxiety. 23.8¡3.5 (18–31). 23% of the patients preferentially
The EHD scale has proven to be very sensitive in used problem focused strategies and twenty percent
exploring discreet emotional changes brought about emotion focused strategies.
by neurological diseases (36,37). The EHD is a 20-
item scale with 10 items assessing the emotional
Comparative results
changes expressed by the patients and 10 items
assessing the emotional state observed by the Patients receiving a psychotropic treatment were not
investigator regarding the patient’s mimics, speech significantly different from the others, on any of the
and motor expressiveness. This scale has a coherent variables. The females had known their diagnosis
factorial structure with five components (irritability, longer than the males: 19¡16 months versus 9.6¡7
anhedonia, hypo/hyperexpressiveness, sadness and months for the males (p50.04). No other difference
felt hypersensitivity) which define two main dimen- between males and females was observed. Patients
sions: the Emotional Deficit dimension (combining younger than 50 years used more problem focused
anhedonia and hypoexpressiveness) and the Loss of strategies (p50.02) than the older patients; no other
Control dimension (combining irritability and difference was observed. Patients recently diagnosed
hyperexpressiveness). (less than six months) presented significantly more
Coping strategies have been assessed with the emotional deficit (p50.01). This emotional deficit
Ways of Coping Checklist (WCC)(22,38), a 40-item was observed by their lack of expressiveness, but was
self-questionnaire which identifies three coping not due to the presence of anhedonia. Age, sex,
styles: coping focused on the problem, coping disease type and duration, depression, anxiety and
focused on emotions, and social support-seeking emotional dimensions were not related to the ALS
coping style. For each patient, a score in the three FRS scores.
strategies is calculated and this makes it possible to
determine which is the strategy most frequently
used. Discussion
As mentioned earlier, the present study must be
Statistical analysis considered as a preliminary study. First, the number
of patients included is not high enough to draw
Descriptive analysis was used for the group studied, definitive conclusions. Second, the time since
and subgroups were compared with the non- diagnosis disclosure and the stages of the disease
parametric test: Mann-Whitney. The significant varied greatly and third, our patients’ sample was not
level was set at pv0.05. representative of the ALS population at large. In
fact, in the present study, only four of them had a
pseudobulbar form of ALS.
Results The absence of depression or anxiety observed in
Descriptive results these patients confirmed some previous studies,
which also mentioned very low scores of depression
No patient met any DSM-IV criteria for a major (9,12–17). However, it must be remembered that six
depressive episode, dysthymia or generalized anxi- of the patients received antidepressant medication at
ety. The mean MADRS score was 6.9¡4.2 (range the time of the evaluation, which could partially
0–18), two patients scored 12 points and one patient explain the low mean score on the MADRS; but
18 points (which corresponds to a mild depressive none of the patients reached the threshold defined
symptomatology for the three of them). for a major depressive episode. Thus the treated
The mean Covi anxiety score was 2.4¡2.3 (range patients were not significantly different from the
0–7). Only three patients scored 6 or 7 points non-treated patients.
(therefore they can be considered as anxious). For ALS patients were neither emotionally blunted,
the EHD scale, the mean score for irritability was nor anhedonic. These results show the globally good
3.5¡3.1 (0–10); for anhedonia, 1.0¡1.8 (range adaptation of these patients to their disease. Another
0–6); for hypo/hyperexpressiveness , 1.6¡4.1 (6–9); recent study also failed to report inappropriate emo-
for sadness, 2.8¡2.3 (range 0–8); and for felt tional expression in ALS patients (15). However,
hypersensitivity, 0.9¡1.3 (0–3). The mean score further studies are needed to determine whether it
for the Emotional Deficit dimension was 2.3¡2.5 is really a good adaptation or whether it is the
(0–7), and for the Loss of Control dimension it was reflection of an important degree of denial or
224 C. Bungener et al.

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