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 sclero- sis (MS) and analyze their findings. The majority of patients evi- denced concealed depression; overt depression was the second most predominant reaction. Although MS patients have previ- ously 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 depres- sion should be a major therapeutic goal. Patients with multiple sclerosis present study attempts to correlate (MS) have frequently been charac- emotional response to the disease terized as euphoric in their emo- with a variety of pertinent vari- tional response to the disease.(1-4) ables, the most important of which The authors' clinical experience, include stability of the illness, loca- however, suggests that while MS tion of the patient, and mobility of patients often adopt an unrealistic the patient. or inappropriately optimistic atti- It is important to define eu- tude toward their illness, such feel- phoria, since clinicians' interpreta- ings may mask an underlying de- tions3 vary. Hinsie and Campbell6 pression. Moreover, many MS pa- define euphoria as a morbid or ab- tients appear overtly depressed' normal sense of well-being. Freed- and show none of the manifesta- man and associates' use the term to tions of so-called euphoria. The denote an altered state of con- -------------------------------------------------------------------------------------- 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. -------------------------------------------------------------------------------------- sciousness characterized by an ex- aggerated feeling of well-being in- appropriate to apparent events. Lidzl agrees that euphoria is a feel- ing of well-being but adds that it hes on an affective spectrum with depressed feelings at one end and elated feelings at the other. lie be- heves that all three responses can be either appropriate or inappro- priate to the circumstances, al- though euphoria is sometimes in- correctly equated with elation. He also notes that euphoria is patho- logic only when inappropriate. Fi- nally, Weinstein' writes that eu- phoria refers to a number of vary- ing psychological and neurophy- siologic states which may include: (1) the attitude of hope and opti- mism 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 indif- ferent to his or her problems, or may give socially inappropriate ex- hibitions of happiness when some gross neurologic deficit is present. Forced laughter or crying is a re- lated disturbance in emotional ex- pression. In this condition, the pa- tient will suddenly and explosively laugh or burst into tears in the absence of an adequate stimulus. The phenomenon occurs with se- vere brain stem involvement and reflects a physiologic defect in the control of affective expression, rather than a psychological mode of adaptation to stress.10 Horenstein1O has noted that a true elevation of mood in MS pa- tients 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 invali dism, or organic brain le- sion(s), or both. Finally, euphoric moods and attitudes are not limited to MS patients and have been re- ported in patients with frontal lobe tumors, Wemicke's aphasia, gen- eral paresis, focal brain lesions, Alzheimer's disease, and Korsa- koff'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 disease13,14 -decreased motor power, spasticity, ataxia, in- tention tremor, optic defects, basal ganglia dysfunction, speech de- fects, impaired sensation, decubitus and other ulcerations, pain, bowel and bladder problems, sexual dis- turbances, 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 mood15, while still others have described a combination of moods, 16-20 including euphoria, de- pression, anxiety, irritability, and general emotional instability. The causes for these mood changes have been ascribed variously to the process of adapting to a chronic disease" and to a period of "mourning." 22 There are also in- vestigators who claim that previous clinical observations regarding mood changes are inaccurate be- cause the researchers then may ------------------------------------ The largest within-group differences in mean scores for ekvated mood andfor overt depression were associated with mobility and location. ------------------------------------ have been unable to anticipate or understand the degree of successful adjustment possible under such ad-' verse 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 ques- tions, the authors instituted a pilot project to study possible relation- ships among a variety of pertinent variables. Materials and method Forty patients with MS partici- pated in the study. Of these, 16 were hospitalized inpatients, all consecutive admissions to the mul- tiple sclerosis unit of the Helen Hayes Hospital in West Haver- straw, 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 diag- nosed and remained physically ac- tive.) The other eight patients were residents of nursing homes. Information regarding patients was obtained from medical records, clinical interviews, and psychologi- cal 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 pa- tie'nt's mobility status-ambulant, wheelchair-confined, or bedridden. The record also served to charac- terize the previous course and cur- rent status of the disease. The length of time since diagnosis of the illness ranged from one to 31 years; half the patients had been diag- nosed 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 spe- cific 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 pro- gressing 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. Clin- ical interviews were conducted to elicit information regarding the characteristic nature of each pa- tient's overall emotional adjust- ment and to observe any evidence of (1) underlying organic mental involvement (suggested by signifi- cant 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 spe- cially constructed questionnaire designed to yield quantitative scores indicative of patients' rela- tive tendencies toward a depressed or elevated mood. In addition, in- terpretation of proverbs and per- formance on portions of the Wechsler Memory Scale were em- ployed 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 im- paired memory. Of these patients, three were nursing home residents with clinical signs of moderate memory impairment evident dur- ing 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, con firmed through their difficulties in abstraction on the proverb test. Two of the 12 patients displayed labile laughter, which was consid- ered grossly inappropriate. Classification of reactions As a basis for classifying patients' reactions to the disease, four gen- eral categories of affective reactions were defined as follows: >Overt depression-an acknowl- edged mood of sadness and dejec- --------------------------------------- The majority of pattents were judged clinically to display overt or concealed depressioi; but questionnaire scores were proportionately highest for concealed depression and neutral mood. --------------------------------------- tion, usually accompanied by one or more of the following: with- drawal from people and activities; psychomotor retardation, as shown by apathy, lethargy, and reduced emotional response not related to medication, fatigue, or other physi- cal causes; and expressions of futil. ity and hopelessness. >Concealed (masked) depres- sion-a conscious or unconscious effort on the part of the patient to control outward expression of the above symptoms as revealed by in- consistencies in behavior or by ex- pressed ideation. >Neutral mood-a realistic recog- nition of one's abilities and limita- tions, and an acceptance of the im- plications of the disease. (There is some question as to whether this category is appropriately named or even identifiable. A "neutral" mood might be considered nonex- istent 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 psy- chometrically.) >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 asso- ciated with overt psychotic symp- toms such as delusions. Most im- portant is that this mood is inap- propriate to the patient's awareness of the nature of his or her illness. For each patient, a consensus of the investigators was used to for- mulate 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 ques- tions with four possible multiple- choice responses for each, repre- senting the four categories, plus a fifth choice-a space for personal- ized write-in responses. The de- pression scales of Beck and asso- ciateS24 and of Zun g25 were re- viewed as guides to pertinent be- havioral characteristics to be included in the special question- naire. The investigators wrote rele- vant questions to determine the pa- tients' general mood, attitude toward future, social interests, ac- tivity levels, reactions to adversity, and self-concept. In scoring, re- sponses to six questions indicating occasional rather than predomin- ant feelings were given one half the weight of the remaining 14 re- sponses. 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 re- actions. Hence, this type of ques- tionnaire differs from most conven- tional depressive inventories in that the patient can depict his or her responses along the entire affective continuum, rather than simply in- dicate 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 catego- ries, the questionnaire provided a score for each category. For scoring purposes, write-in answers were evaluated and assigned to the ap- propriate category in order to as- sure an equal total possible score of 17 units for each patient. Results The study provided two indepen- dent 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) ques- tionnaire scores obtained from each patient, representing the dis- tribution of each patient's re- sponses among the four affective categories. Table I summarizes re- lationships 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 cate ones on the basis of clinical judgment and on the basis of the category in which they obtained their highest ques- tionnaire scores. (In determining the highest score, scores in all cate- gories were converted to compara- ble units of measurement by sub- tracting 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.) Com- parison of the data derived from questionnaire scores with the data based on clinical judgment pro- vides a means of assessing the ac- -------------------------------- The evidence suggests that functional limitations arising from progressive disability may constitute a major influence on the emotional response. -------------------------------- curacy 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 question- naire scores would enhance confi- dence 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 catego- ries-elevated mood, concealed de- pression, and overt depression. The level of statistical significance ob- tained (P <.001) indicates that correlations this large would occur by chance less than once per thou- sand samples. The correlation for the neutral mood category was not significant. The mean scores in Table I are intended to show the variation in group mean scores within each questionnaire cate- gory; 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 distri- butions, one derived from clinical ratings and the other from the highest questionnaire score, was also statistically significant. Recog- nizing that the number of patients was small, the evidence suggests that clinical judgments and ques- tionnaire scores tended to identify patients' emotional reactions simi- larly, 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 dis- play overt or concealed depression, but questionnaire scores were pro- portionately highest for concealed depression neutral mood. Whereas the highest questionnaire score identified 21 of the clinically cate- gorized patients, the second highest above-average score identified an additional ten patients for a com- bined 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 affec- tive response was most prevalent probably contributed to discrepan- cies between clinical judgments and questionnaire scores, especially for the neutral mood category. Variables. Affective responses were compared with a set of vari- ables, including duration of illness, progression of illness, course of ill- ness, current status of illness, loca- tion of patient, level of mobility, presence or absence of organic mental symptoms, and presence or absence of exacerbations and re- missions. A study of the relation- ships 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 con- cealed depression were associated with location and current status of illness. Current status score dif- ferences, however, were found only among six acutely ill patients, five of whom were hospitalized. Con- sequently, acute illness was not treated separately in the succeeding analysis. Mean questionnaire scores for eight groups of patients represent- ing eight combinations of mobility and location are presented graphi- cally in the Figure. It shows a gen- eral trend for elevated mood scores to diminish and an inconsistent tendency for overt depression scores to increase with the progres- sion in functional limitations rep- resented by the mobility-location groups. The small number of pa- tients and the degree of variability in scores within groups, however, preclude statistical significance for these tendencies. Concealed de- pression 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 volvement or effective psychologi- prompting the study was the exis- cal reinforcement of artificial hopes tence and cause of euphoria. It was of improvement. The latter might hypothesized that if euphoria were be derived from frequent remis- . present, it might be associated with sions characteristic of the illness. two factors- organic mental in- Scores for patients with and with- (continued) ----------------------------------------------------------------- TABLE 1 MEAN QUESTIONNAIRE SCORES BY CLINCAL GROUP CLINCAL MEAN SCORES CLASSIFICATION ON QUESTIONNAIRE --------------------------------------------------------------- PATIENT OVERT CONCEALED NUETRAL ELEVATED GROUP N DEPRESSION DEPRESSION MOOD MOOD --------------------------------------------------------------- ELEVATED MOOD 4 0.88 4.63 5.63 5.88 NEUTRAL MOOD 4 2.63 5.75 7.50 1.13 CONCEALED DEPRESSION 19 1.66 6.92 6.11 2.32 OVERT DEPRESSION 13 5.38 3.77 7.19 0.65 TOTAL 40 2.89 5.55 6.55 2.01 CORRELATIONS 0.62* 0.51 0.15 0.63 >Point biserial correlation between questionnaire score and inclusion or non-inclusion in the corresponding patient group. *P<.001 ----------------------------------------------------------------- TABLE 2 DISTRIBTION OF PATIENTS BY CLINICAL JUDGEMENT AND BY HIGHEST QUESTIONNAIRE SCORE ----------------------------------------------------------- CLINCAL PATIENTS CATAGORIZED CLASSIFICATION BY HIGHEST SCORE (N) --------------------------------------------------------------- PATIENT OVERT CONCEALED NUETRAL ELEVATED GROUP DEPRESSION DEPRESSION MOOD MOOD TOTAL ------------------------------------------------------------------- ELEVATED MOOD 1 3 4 NEUTRAL MOOD 2 2 4 CONCEALED DEPRESSION 2 12 2 3 19 OVERT DEPRESSION 4 2 7 13 TOTAL 6 17 11 6 40 X^2=25.75, P<.005 -----------------------------------------------------------------