CNS: Emotional Responses to Multiple Sclerosis

CNS > Papers/Essays > MS > Emotional Responses to Multiple Sclerosis

EMOTIONAL RESPONSES TO MULTIPLE SCLEROSIS

Roger M. Baretz, MD & George R. Stephanson, Ph.D

ABSTRACT: Reporting on a pilot study, the authors describe the emotional reactions of 40 patients suffering from multiple sclerosis (MS) and analyze their findings. The majority of patients evidenced concealed depression; overt depression was the second most predominant reaction. Although MS patients have previously been characterized as euphoric, this study did not show them to have a high rate of elevated moods. With progression of the disease, overt depression tended to increase, while denial seemed to decrease. Helping the MS patient cope with depression should be a major therapeutic goal.

Patients with multiple sclerosis (MS) have frequently been characterized as euphoric in their emotional response to the disease.^1-4 The authors' clinical experience, however, suggests that while MS patients often adopt an unrealistic or inappropriately optimistic attitude toward their illness, such feelings may mask an underlying depression. Moreover, many MS patients appear overtly depressed and show none of the manifestations of so-called euphoria. The present study attempts to correlate emotional response to the disease with a variety of pertinent variables, the most important of which include stability of the illness, location of the patient, and mobility of the patient. It is important to define euphoria, since clinicians' interpretations³ vary. Hinsie and Campbell⁶ define euphoria as a morbid or abnormal sense of well-being. Freedman and associates⁷ use the term to denote an altered state of consciousness characterized by an exaggerated feeling of well-being inappropriate to apparent events. Lidz⁸ agrees that euphoria is a feeling of well-being but adds that it lies on an affective spectrum with depressed feelings at one end and elated feelings at the other. He believes that all three responses can be either appropriate or inappropriate to the circumstances, although euphoria is sometimes incorrectly equated with elation. He also notes that euphoria is pathologic only when inappropriate. Finally, Weinstein⁹ writes that euphoria refers to a number of varying psychological and neurophysiologic states which may include: (1) the attitude of hope and optimism present with normal brain function; (2) the elevation of mood sometimes shown by patients after treatment with steroids, even though little or no objective change in status can be found; and (3) a manifestation of anosognosia in which the patient may seem indifferent to his or her problems, or may give socially inappropriate exhibitions of happiness when some gross neurologic deficit is present. Forced laughter or crying is a related disturbance in emotional expression. In this condition, the patient will suddenly and explosively laugh or burst into tears in the absence of an adequate stimulus. The phenomenon occurs with severe brain stem involvement and reflects a physiologic defect in the control of affective expression, rather than a psychological mode of adaptation to stress.¹⁰

Horenstein^1O has noted that a true elevation of mood in MS patients probably does not occur without evidence of depression or dementia. Kahana and associates11 acknowledge that the emotional changes observed in MS patients cannot be clearly attributed to one single cause and state that these reactions may be the result of a psychological reaction to the state of invalidism, or organic brain lesion(s), or both. Finally, euphoric moods and attitudes are not limited to MS patients and have been reported in patients with frontal lobe tumors, Wernicke's aphasia, general paresis, focal brain lesions, Alzheimer's disease, and Korsakoff's syndrome.¹²

Depression, on the other hand, has been associated with practically every known human condition, especially chronic illness. Multiple sclerosis is certainly no exception, and when one considers the broad range of problems that can arise from this disease^13,14 -decreased motor power, spasticity, ataxia, intention tremor, optic defects, basal ganglia dysfunction, speech defects, impaired sensation, decubitus and other ulcerations, pain, bowel and bladder problems, sexual disturbances, and so forth-one is tempted to say that MS patients have every reason to be depressed. Hence, some researchers claim that depression is the major expression of mood,¹⁵ while still others have described a combination of moods,^16-20 including euphoria, depression, anxiety, irritability, and general emotional instability. The causes for these mood changes have been ascribed variously to the process of adapting to a chronic disease²¹ and to a period of "mourning." ²² There are also investigators who claim that previous clinical observations regarding mood changes are inaccurate because the researchers then may have been unable to anticipate or understand the degree of successful adjustment possible under such adverse circumstances.²³

The questions that remain to be answered, then, are:

Which emotional symptoms will predominate in a representative group of MS patients?
Which characteristics, either demographic or clinical, correlate with the predominant- mood changes of MS patients?

To seek answers to these questions, the authors instituted a pilot project to study possible relationships among a variety of pertinent variables.

Materials and method

Forty patients with MS participated in the study. Of these, 16 were hospitalized inpatients, all consecutive admissions to the multiple sclerosis unit of the Helen Hayes Hospital in West Haverstraw, N.Y. Sixteen other patients, living at home, were either former hospital patients (observed in the outpatient clinic or evaluated at their homes) or volunteers located by the Mid-Hudson Valley chapter of the National Multiple Sclerosis Society. (Five of these volunteers had been relatively recently diagnosed and remained physically active.) The other eight patients were residents of nursing homes.

Information regarding patients was obtained from medical records, clinical interviews, and psychological testing. The medical record was reviewed to verify the diagnosis of MS, to determine the time since onset and the time since formal diagnosis, and to confirm the patient's mobility status-ambulant, wheelchair-confined, or bedridden. The record also served to characterize the previous course and current status of the disease. The length of time since diagnosis of the illness ranged from one to 31 years; half the patients had been diagnosed less than eight years and half more than nine years before the record review. The maximum time since onset was reported as 40 years, but there was relatively little consistency in the medical records or certainty among patients as to what actually constituted the specific initial symptoms. At the time of the study, 16 patients were still capable of upright ambulation, 18 were limited to a wheelchair, and 6 were confined to bed.

In collaboration with the director of the multiple sclerosis unit, the authors categorized all patients for each of the following variables: (1) slow versus rapid progression of the disease; (2) history of exacerbations and remissions versus absence of such history; (3) currently progressing symptoms versus currently unchanging ones; and (4) medical stability versus acute illness at the time of evaluation.

All patients were evaluated by one or both of the investigators; three were seen by the psychiatric consultant only, and three were seen by the psychologist only. Clinical interviews were conducted to elicit information regarding the characteristic nature of each patient's overall emotional adjustment and to observe any evidence of (1) underlying organic mental involvement (suggested by significant memory deficits or excessively concrete thinking) or (2) lability or lack of emotional control (revealed by disinhibited laughing or crying). To supplement the investigators' combined clinical judgment, each patient was administered a specially constructed questionnaire designed to yield quantitative scores indicative of patients' relative tendencies toward a depressed or elevated mood. In addition, interpretation of proverbs and performance on portions of the Wechsler Memory Scale were employed to provide additional data relevant to the presence or absence of organic brain syndrome.

Twelve patients were judged to display some evidence of organic mental involvement, primarily impaired memory. Of these patients, three were nursing home residents with clinical signs of moderate memory impairment evident during the interview. Nine patients showed clinical evidence of mild memory impairment, confirmed in each case by an inability to retain more than one of four "hard-word" pairs in three trials on the associate leaming subtest of the Wechsler Memory Scale. In addition, five of the 12 patients manifested mild or moderate mental impairment, confirmed through their difficulties in abstraction on the proverb test. Two of the 12 patients displayed labile laughter, which was considered grossly inappropriate.

Classification of reactions

As a basis for classifying patients' reactions to the disease, four general categories of affective reactions were defined as follows:

Overt depression-an acknowledged mood of sadness and dejection, usually accompanied by one or more of the following: withdrawal from people and activities; psychomotor retardation, as shown by apathy, lethargy, and reduced emotional response not related to medication, fatigue, or other physical causes; and expressions of futility and hopelessness.

Concealed (masked) depression-a conscious or unconscious effort on the part of the patient to control outward expression of the above symptoms as revealed by inconsistencies in behavior or by expressed ideation.

Neutral mood-a realistic recognition of one's abilities and limitations, and an acceptance of the implications of the disease. (There is some question as to whether this category is appropriately named or even identifiable. A "neutral" mood might be considered nonexistent or thought to present itself as an outward but deceptive cloak for an underlying feeling that is not readily expressed. There is also some question as to whether this particular category is cognitive rather than affective. The authors acknowledge these shortcomings but prefer to use the category as part of the range of reactions they were able to elicit clinically or psychometrically.)

Elevated mood-the upper end of a continuum, characterized by a mood of optimism and exuberance that may have a hypomanic flavor. In more severe cases, the mood has been described as euphoric; in the most severe cases, it may be associated with overt psychotic symptoms such as delusions. Most important is that this mood is inappropriate to the patient's awareness of the nature of his or her illness.

For each patient, a consensus of the investigators was used to formulate a clinical judgment as to which of the four categories best represented the patient's overall pattern of adjustment. The special questionnaire consisted of 20 questions with four possible multiple choice responses for each, representing the four categories, plus a fifth choice-a space for personalized write-in responses. The depression scales of Beck and associates²⁴ and of Zung²⁵ were reviewed as guides to pertinent behavioral characteristics to be included in the special questionnaire. The investigators wrote relevant questions to determine the patients' general mood, attitude toward future, social interests, activity levels, reactions to adversity, and self-concept. In scoring, responses to six questions indicating occasional rather than predominant feelings were given one half the weight of the remaining 14 responses. Material was drawn from the authors' prior experience with MS patients in order to include content specific to the illness and to devise response choices pertinent to the four categories of affective reactions. Hence, this type of questionnaire differs from most conventional depressive inventories in that the patient can depict his or her responses along the entire affective continuum, rather than simply indicate the presence or absence of depression. Whereas the clinical judgment mode during the initial interview was used to assign the patient to one of the four categories, the questionnaire provided a score for each category. For scoring purposes, write-in answers were evaluated and assigned to the appropriate category in order to assure an equal total possible score of 17 units for each patient.

Results

The study provided two independent sources of data regarding the four defined patterns of emotional reactions to MS: (1) the clinically determined affective category to which each patient was assigned after the interview; and (2) questionnaire scores obtained from each patient, representing the distribution of each patient's responses among the four affective categories. Table 1 summarizes relationships between these two sets of data. For each type of affective pattern, average questionnaire scores are shown for each clinical group of patients and for the total number of patients. Table 2 shows the number of patients assigned to each of the four categories on the basis of clinical judgment and on the basis of the category in which they obtained their highest questionnaire scores. (In determining the highest score, scores in all categories were converted to comparable units of measurement by subtracting the mean of the category from each above-average score in that category, and then dividing the resulting difference by the standard deviation of the category). Comparison of the data derived from questionnaire scores with the data based on clinical judgment provides a means of assessing the accuracy with which the defined emotional reactions were identified and the relative prevalence of such reactions among patients with MS.

Validity of correlations. While agreement between independent sources of data does not guarantee the validity of findings, a significant degree of relationship between the clinical ratings and the questionnaire scores would enhance confidence in the results. Two such analyses were performed. First, for the data in Table 1, point-biserial correlations indicated statistically significant associations between the investigators' clinical judgments and the questionnaire scores for three of the four affective categories-elevated mood, concealed depression, and overt depression. The level of statistical significance obtained (P <.001) indicates that correlations this large would occur by chance less than once per thousand samples. The correlation for the neutral mood category was not significant. The mean scores in Table 1 are intended to show the variation in group mean scores within each questionnaire category; the total mean score for all patients in each such category is used as a reference point. For the data in Table 2, the chi square value obtained for the relationship between the two frequency distributions, one derived from clinical ratings and the other from the highest questionnaire score, was also statistically significant. Recognizing that the number of patients was small, the evidence suggests that clinical judgments and questionnaire scores tended to identify patients' emotional reactions similarly, except for those characterized as neutral in mood.

Categorization. Regarding the predominance of the four patterns of affective response shown in Table 2, the majority of patients (32) were judged clinically to display overt or concealed depression, but questionnaire scores were proportionately highest for concealed depression neutral mood. Whereas the highest questionnaire score identified 21 of the clinically categorized patients, the second highest above-average score identified an additional ten patients for a combined total of 31 correct matches in the group of 40 patients. It should be noted that individuals in this sample tended to display mixed emotional reactions. Difficulties in evaluating which particular affective response was most prevalent probably contributed to discrepancies between clinical judgments and questionnaire scores, especially for the neutral mood category.

Variables. Affective responses were compared with a set of variables, including duration of illness, progression of illness, course of illness, current status of illness, location of patient, level of mobility, presence or absence of organic mental symptoms, and presence or absence of exacerbations and remissions. A study of the relationships among these factors and the clinical ratings and questionnaire scores showed that the largest within-group differences in mean scores for elevated mood and for overt depression were associated with mobility and location, while the largest differences in mean scores for neutral mood and concealed depression were associated with location and current status of illness. Current status score differences, however, were found only among six acutely ill patients, five of whom were hospitalized. Consequently, acute illness was not treated separately in the succeeding analysis.

Mean questionnaire scores for eight groups of patients representing eight combinations of mobility and location are presented graphically in the Figure. It shows a general trend for elevated mood scores to diminish and an inconsistent tendency for overt depression scores to increase with the progression in functional limitations represented by the mobility-location groups. The small number of patients and the degree of variability in scores within groups, however, preclude statistical significance for these tendencies. Concealed depression scores are of interest in that they tended to be higher in hospitalized patients, suggesting possible heightened anxiety arising from acute illness, separation, and similar sources of concern.

Euphoria. One of the issues prompting the study was the existence and cause of euphoria. It was hypothesized that if euphoria were present, it might be associated with two factors - organic mental involvement or effective psychological reinforcement of artificial hopes of improvement. The latter might be derived from frequent remissions characteristic of the illness. Scores for patients with and with

Dr. Baretz is attending psychiatrist and Dr. Stephenson is consulting psychologist at Helen Hayes HospitaL Reprint requests to Dr. Baretz there, Route 9 W, West Haverstraw, N Y 10993.