The development and descriptive use of the Lithium attitudes questionnaire

Journal ofAffectirv Disorders, 22 (1991) 211-219 0 1991 Elsevier Science Publishers B.V. 0165-0327/91/$03.50 ADONIS 0165032791001105

211

JAD 00821

The development and descriptive use of the Lithium Attitudes Questionnaire Norman Department of Psychiatv,

S. Harvey

Uniwrsity of Sheffield, Royal Hallamshire Hospital, Sheffield SIO UF, U.K. (Received 23 March 1989) (Revision received 25 April 1991) (Accepted 2 May 1991)

Summary Studies of patients’ attitudes towards lithium treatment are reviewed. In the present work, a brief questionnaire was developed as a means of identifying and grouping the problems patients commonly have with taking lithium regularly. This ‘Lithium Attitudes Questionnaire’ was found to yield consistent results which patients later confirmed at interview. It was also evaluated in relation to assessments patients made, prior to its first administration, of the main advantages and disadvantages of lithium treatment. Its subscores were then used to describe patients who expressed opposition to continuing on lithium, and those who missed their hypomanic episodes.

Key words: Lithium

treatment;

Lithium

Attitudes

Introduction Attitudes influencing lithium compliance have become a focus of study (Jamison and Akiskal, 19831, because even minor episodes of non-compliance are associated with a disproportionately high rate of relapse (Lapierre et al., 1980; Christodoulou and Lykouras, 1982; Tyrer, 1983). The clinicians’ understanding of their patients’

Address for correspondence: Norman S. Harvey, Lecturer in Psychiatry, University of Sheffield, Royal Hallamshire Hospital, Glossop Road, Sheffield SlO 2JF, U.K. Tel.: 0742. 766222, ext. 2870/2644.

Questionnaire;

Side-effects;

Compliance

attitudes towards long-term treatment can at best be only partial, particularly for those attitudes leading to rejection of treatment. Jamison et al. (1979) have surveyed attitudes of lithium patients that seem likely to affect compliance, and also the opinions of clinicians as to what these attitudes might be. The clinicians overestimated the role of somatic side-effects in promoting noncompliance, and underestimated the role of lithium’s effects on cognition. Jamison et al. found that most clinicians were impressed by their patients’ denial of the severity of their illness. They explored the notion that preference for a manic lifestyle may increase the risk of non-compliance (Van Putten, 1975), and

212

showed that only 55% considered fear of hypomania an important reason for taking lithium, compared with 96% who were motivated by depression to take lithium. The patients’ attitudes described by these workers that appear most likely to be amenable to change included perceived efficacy of treatment, degree and type of side-effects, and attitudes towards self and the aetiology of the disorder. A further suggestion was that social stigma may lead to a rejection of the illness role, and with it the treatment (Kerry, 1978). Vestergaard and Amdisen (1983) used a standard method of eliciting the spontaneous opinions of a group of long-term lithium patients, which has been employed in the present study. They asked what was the single most notable advantage and the single most notable disadvantage of the treatment. The advantages were freedom from symptoms (61%), stable social functioning (13%), and to satisfy the demands of others (16%). The disadvantages were somatic complaints (4%), psychological complaints (9%) and social and ‘existential’ problems (21%). Various research instruments have been used to study the attitudes of lithium patients. The Health Belief Model tests patients’ attitudes towards their illnesses, treatments and doctors. It has been used to identify predictors of compliance with a variety of treatment regimens (Becker et al., 1974). When given to outpatients on lithium maintenance treatment (Connelly et al., 1982) it accounted for only 7% of the variance in treatment adherence. The Illness Attitude Scales (Kellner et al., 1983) elicit attitudes associated with hypochondriasis and abnormal illness behaviour, which are no more prevalent in lithium patients than in the healthy population (Fava et al., 1984). It is clear that the attitudes arising from lithium treatment are so situation-specific that, for their study, a specially designed instrument is needed. The purpose of the present work is to develop such an instrument, which measures attitudes that may affect compliance and are amenable to change. The ultimate use for this instrument is in programmes that seek to improve treatment compliance by influencing patient attitudes towards lithium. Such programmes are still at a very early stage of development (Cochran, 1984; Frank et

al., 1985). They often lack goal-direction and are too time-consuming and ineffective for regular clinical use. However, it is hoped that the instrument will provide a new measure for the outcome of improved programmes of this kind. Method Preliminary work Twenty questionnaire items were devised, based on clinical experience and the suggestions of colleagues, and designed to detect attitudes likely to impair compliance in patients receiving lithium maintenance treatment. They were made into a yes or no forced response questionnaire which was given to a group of 10 established lithium clinic attenders. Their understanding of the items was assessed and test-retest reliability calculated. Some items were rejected and new ones generated to produce a second 19-item questionnaire. This was given to patients, who were retested in an interview, then the items were discussed with the patients and colleagues and prepared for use in a final questionnaire, the Lithium Attitudes Questionnaire (LAQ) (Harvey, 1991). The LAQ (Appendix) was produced by interspersing the items most likely to elicit direct criticisms of lithium treatment amongst the more positively worded questions. In addition, each reply tends to alternate between affirmation and denial for successive items, to obviate the effect of response set bias. The items were designated to seven attitude subcategories (Table 1) on clinical grounds, avoiding the artificial groupings of factor analysis, and each item scored one point for a response indicating a problem. A matching presentation of the LAQ in interview form (the LAI) was then constructed, to be administered to LAQ respondents by the clinic doctor. The interview provides a standard expanded version of each item, which seeks to orientate the respondents to its precise meaning without adding to the factual content of the item. For instance, for items 11 and 13 the LA1 prevents respondents from construing the implicit suggestion of intentional non-compliance which could possibly be inferred from the corresponding LAQ item. Individualistic interpretations of

213 TABLE THE

1

Results

LAO SUBSCORES

Subscore

Problem

area

Opposed to continuing Li treatment regimen Therapeutic effectiveness of Li not accepted Concerned about side-effects Difficulty maintaining pill-taking routines Denial of illness severity impairing Li prophylaxis Subcultural attitudes opposed to drug treatment Dissatisfaction with factual knowledge of Li

Constituent

items

1, 10, 12, 17 6, 19 3, 7 4. 11. 14, 18 2, 9, 15 5, 8, 13 16

items, such as number 11 by those patients living alone, or number 17 by those who had already been on lithium for long periods, were reconciled with the intended meanings by descriptions in the LA1 which placed these attitudes in a broader context. Patients and test procedure Sixty consecutive lithium clinic attenders were entered into the study over a 6-week period. Twenty-seven had a DSM-IIIR diagnosis of bipolar disorder, 12 had unipolar mania, 14 major depression, recurrent, four atypical disorder and three had dysthymic disorder. One patient refused further treatment after the first attendance, for reasons unrelated to the project. At the first test session the patients were asked by the clinic doctors what, in their experience, was the most notable advantage and the most notable disadvantage of lithium treatment and their replies were recorded. They were also asked whether they missed their hypomanic episodes, without any suggestion that their replies would have a negative construction placed on them. They were given the LAQ to complete, alone and in private, and it was again administered 6 weeks later. After a further 18 weeks they were given the LAQ under the same conditions and then the LA1 was conducted by the clinic doctors, who were blind to all previous results from the LAQ. The patients were blind to the intentions and design of the study.

The mean + SD characteristics of the group, of which 20 were males, were as follows: age 54.4 rt 13.2 years, duration of illness 17.9 + 10.8 years and total number of illness episodes 7.6 + 7.3. The mean dose of lithium was 1003 + 39.2 mg and the duration of lithium treatment was 7.0 k 5.2 years. They were all in remission at the times of testing, having been free of illness for a mean period of 4.5 i 4.4 years. Test-retest reliability All the LAQ items were answered by all the patients completing the study, for every test session. No patient had objections to completing the questionnaire. The results of the first two sessions were used to assess test-retest reliability. The percentage of patients giving identical responses on these two occasions was calculated for each item. As can be seen from Table 2, all the responses, with the exception of those for item 5, are strikingly consistent. However, percentage test-retest reliability is an inaccurate measure of reliability, so Cohen’s K was then used, which takes into account the possibility of chance agreement.

K=-

PO- PC 1 -P,

PO = observed probability of agreement; PC = chance expected probability of agreement. There were no negative scores, which would have indicated less than chance agreement. The highest possible score for K is 1, and most of the K values show good observed probability of agreement. It can be seen that the four items with a K equal to 0 had a very high percentage agreement, due to their high incidence of agreement for negative replies. The reason for these items having a zero K was that they all had a very low incidence of positive replies, which resulted in high chance expected probabilities of agreement. This made it impossible to assess their observed probability of agreement using their K values. In this situation the zero K does not indicate low agreement but suggests that the par-

214 TABLE

2

THE PROPORTION OF PATIENTS WHOSE RESPONSES WERE TEST-RETEST RELIABLE AND THOSE ELICITED WITH THE LA1 (LA1 pod FOR EACH ITEM OF THE LAQ, THE RELATIVE AND THE K VALUES OF THE TEST-RETEST PROCEDURE (K(~) AND LA1 hp) COMPARISON

LAQ item 1 2 4

IO 11 12 13 14 15 16 17 18 19

Test-retest reliability h = 59) (%‘c)

Ktr

Test-retest relative risk

LA1 pm. (n = 59) (%‘c)

K*

LA1 pos. relative risk

88.2 81.4 91.5 91.5 57.6 96.6 83.1 Y3.2 88.1 89.8 91.5 94.9 79.7 88.1 69.5 74.6 16.3 76.3 78.0

0.6 0.1 0.3 0.0 0.2 0.0 0.3 0.5 0.9 0.7 0.6 0.0 0.6 0.6 0.4 0.5 0.4 0.4 0.0

3.42 1.27 2.82 0.59 1.32 0.x5 2.Y7 4.41 2.00 5.36 5.22 0.75 3.59 4.53 1.73 2.99 2.63 2.59 1.06

86.2 89.7 93.1 91.4 65.5 9x.3 89.7 98.3 93.1 79.3 94.8 94.x 72.4 87.9 70.7 89.7 82.8 87.9 94.8

0.5 0.0

3.74 0.73 4.38 3.50 1.49 9.24 4.53

titular group of patients in the present study were unresponsive to these items. Since the purpose of the LAQ is to screen for positive responses, that is those indicating problems with lithium treatment, it is also important to examine the consistency of such responses. The relative risk was therefore calculated for each item using the following equation:

Relative

IDENTICAL WITH RISK STATISTICS,

risk =

a/b

+ 0.1

c/d

+ 0.1

a = number of retested patients remaining positive; b = number of patients originally positive on

the item; c = number of retested patients becoming positive; d = number of patients originally negative on the item. Using this procedure, a comparison can be made between the tendency to stick consistently to a positive response and the tendency to produce a positive response through vacillation. The higher the relative risk, the more consistent is the positive response. The relative risks seen in Table 2 indicate that only three items showed relatively

0.5

0.3 0.2 0.9 0.5 0.0 0.5 0.5 0.6 0.0 0.4 0.5 0.3 0.5 0.5 0.7 0.4

I .oo 4.33 2.92 6.81 0.85 2.19 4.00 2.05 3.99 3.25 4.67 4.41

greater inconsistency, such as to produce a score less than one. Thus most items that were scored positively during the first administration of the LAQ remained consistently positive during retesting. Items scored negatively were less likely to be scored positively during the second test. Three of the items had a relative risk less than unity and all had KS equal to zero. It follows that on the relative risk formula ‘a’ equals zero for these items. In this situation, if the relative risk was 0.5, for example, one in 10 negative scores would have became positive during the retest. As the relative risk is greater than 0.5 for these three items, less than one in 10 change from negative to positive. Thus in addition to most patients not agreeing to these items, relatively few changed their minds and responded positively to them during the retest. No more than one of these items is to be found amongst those comprising any single subscore of the LAQ. L.AI identical responses The patients’ responses to the LAQ from the third test session were then compared with the

215

analogous responses recorded during the standard interview using the LAI. This was to establish whether a quick screening instrument such as the LAQ was as effective as a more time-consuming method of examination. The results of the LAQ and LA1 were compared item by item. The percentage of patients with identical responses is given in Table 2, and is very high. Kappa was zero for three items. The same relative risk procedure was used for LA1 identical responses as for test-retest reliability (Table 2). Items 2 and 12 were the only items which were inconsistent under interview conditions, scoring less than one, and both had KS equal to zero. Thus most patients in the present study group did not agree to these two items, and less than one in 10 changed their minds and responded positively to them during the interview. Item 12 showed relative instability and zero KS during both the test-retest and LA1 comparison procedures. When evaluating the LA1 responses it should be borne in mind that, owing to the design of the study, the LAQ was administered repeatedly prior to its comparison with the LAI. Thus these results may not accurately represent those which would have been obtained at the time of its initial administration. Advantages / disadcantages The next task was to assess how important patients considered their problems with lithium to be. The most notable advantages and disadvantages they expressed at the start of the study were grouped into categories. The most notable advantage was considered by 40 patients to be its direct therapeutic effects, 32 of these regarding lithium as a mood stabiliser, while four attributed its effects to sedation, and four reported increased wellbeing and improved concentration. Of the remaining 20 patients, nine considered that lithium made a normal lifestyle possible, four thought it most important that lithium was tolerated better than alternative drugs, three thought that there were no beneficial effects, and four did not know. The main disadvantages of lithium corresponded with certain of the LAQ subscore categories. Twenty-one responses were within sub-

score 3, seven in subscore 4, six in subscore 6 and one in subscore 2. Any patient who complained of disadvantages and saw no advantage in lithium treatment was linked with subscore 1, opposition to remaining on lithium treatment. There was only one such patient, and it was subsequently noted that he was the one who refused further treatment during the study. Twenty-five patients denied any disadvantage. These results are similar in type to those obtained by Vestergaard and Amdisen (1983) with the same method, but the patients in the present study were more concerned with physical side-effects. The most frequent side-effects complained of were thirst, polyuria, obesity and gastrointestinal problems. In contrast with the findings of Jamison et al. (19791, only three complained of negative psychological effects, namely apathy, drowsiness or impaired memory. In Fig. 1 the number of patients scoring positively for each LAQ subscore during the first test completion are shown. The proportions of these patients who also complained of the corresponding notable disadvantages are included. This gives the percentage of patients indicating difficulties on the LAQ subscores who regard these as their most noteworthy problems with lithium treatment. The figure shows that LAQ subscore 3, regarding the side-effects of lithium, was considered a noteworthy disadvantage of treatment by the highest proportion of respondents. The LAQ

No.

Positive

Respondents

I

I q

No.

n

% Disadvantage

Positive

Fig. 1. The number of positive LAQ respondents for each LAQ subscore, and the proportion of those who consider each problem area the most notable disadvantage of lithium treatment.

216

subscore with the second highest disadvantage was subscore 6, for which subcultural attitudes were in opposition to drug treatment. Difficulty maintaining pill-taking routines, subscore 4, was a noteworthy disadvantage in 14% of the positive respondents. Thus the LAQ subscores may be ranked in a hierarchy on empirical grounds, although they cannot be quantified in relation to one another on the same scale, owing to conceptual differences and because they have different numbers of constituent items. It is of interest that no patients volunteered, as their most notable disadvantage, that they were on a potentially dangerous drug without knowing sufficient about it to deal with problems that might arise. This was despite a large number of patients indicating on the LAQ that they did not know enough about lithium. Use of the LAQ to describe special patient subgroups The present work includes some preliminary descriptive data, using the LAQ, though these are tentative owing to the relatively small numbers of patients involved, and no attempt has been made to subject the results to statistical analysis, which would involve using multiple tests of probability. Nonetheless, the findings are of interest, and demonstrate some of the potential uses of the LAQ. Though the group as a whole was ostensibly compliant, as many as 45% were prepared to express an opposition to continuing with lithium

L

Fig. 3 LAQ subscores

A P Subscore

for patients missing/not manic episodes.

missing

hypo-

treatment on the LAQ. These patients, as can be seen from Fig. 2, complained of side-effects 11 times more often than those who were unopposed to treatment, and they were twice as likely to deny the severity of their illness and to have subcultural attitudes opposed to treatment. Lastly, patients missing their hypomanic episodes were studied. Only seven of the 40 patients who had experienced hypomanic episodes agreed that they missed them, and one patient was undecided. As can be seen from Fig. 3, comparing the seven patients with those not missing their hypomanic episodes, their opposition score was markedly higher, five of them scoring positively. All but one accepted the therapeutic effectiveness of lithium, but they expressed greater concern regarding side-effects. They showed only slightly more difficulty in maintaining pill-taking routines and from opposing subcultural attitudes. It was not expected that the denial subscore would be only barely raised. Discussion

Fig. 2. Patients opposed/not opposed to lithium treatment. Percentages with positive responses for each LAQ subscore.

There is no prescribed criterion against which to measure attitudes, but operational definitions may cover certain specific problem areas which are well known to clinicians and are likely to affect lithium compliance. Using this approach, an instrument has been designed which may be used to describe and compare patient groups on lithium. The LAQ is a rapid, reliable screening instrument which appears to be as effective as a

lengthier standard interview with a lithium clinic doctor, and which has a high level of acceptability to lithium patients. It was developed in response to a growing interest in this field, where no similar tests are to be found. The early formulation of the LAQ involved lithium patients in two phases of formal tests and informal discussions. Once the items represented the commonest problems, clearly and tactfully, and were arranged to avoid response set bias, the final form of the LAQ was tested on a large group of regular lithium users. The specificity of the items, their importance to the patients and the absence of extraneous influences during the test procedure have doubtless all contributed to the good test-retest reliability that was found. Patients scoring positively on the LAQ were more likely to remain consistent in these responses than to modify their negative responses to positive ones on retesting. Patients were unresponsive to a small number of items, the adequacy of which was difficult to assess. It is to be expected that in any patient group the prevalence of certain problems differs from that generally encountered, owing to situational differences and selective factors. Though patients appeared to understand the meaning of these items but did not score positively on them, it is possible that their relevance will emerge with future use of the LAQ. For example, item 12 performed worst overall because almost all the patients agreed with this item, but it must be remembered that most of them were on established lithium treatment. In a clinic with a larger proportion of patients recently placed on lithium, an overt antithesis to new routines may emerge. In comparing a brief questionnaire such as the LAQ with the more detailed questions of the LAI, it was considered possible that patients’ responses would differ substantially. However, the percentages of identical responses were high for all but three items, which had zero KS because few patients had responded positively to them. The relative risk statistics again showed consistent responses. The subcategories of items, from which the LAQ subscores derive, describe specific problem areas, most of which are considered by patients to represent noteworthy disadvantages of lithium

therapy. The three subcategories of most relevance to patients were for side-effects, subcultural attitudes and difficulty maintaining pill-taking routines. Past studies have identified patient groups of special interest among lithium clinic attenders, on which this study has made some preliminary observations using the LAQ. Jamison and Akiskal (1983) drew attention to the perplexing nature of ostensibly compliant patients who, from the clinician’s point of view, accepted powerful mind and mood altering drugs, for indeterminate periods, without protest or apparent concern for side-effects or the existential issues posed. In the author’s experience this behaviour need not reflect the severity of the illness prompting lithium treatment. The majority of the patients in the present study appeared agreeable to treatment, and indeed 87% believed in lithium’s therapeutic efficacy, but on closer inspection, using the LAQ, almost half of them expressed some opposition to continuing with lithium treatment. The present findings suggest that these patients tend to deny the severity of their illness so that subcultural pressures and the inconvenience of side-effects are sufficient to bring about opposition to treatment. Thus a number of interacting variables are likely to result in differing degrees of compliance. Finally, a small group who agreed to missing their hypomanic episodes showed higher opposition to treatment and concern regarding side-effects. Thus it appears that remediable factors may play a role in maintaining their attitude to their illness. It is of interest that they did not show a global denial of illness severity or disbelief in the therapeutic effectiveness of lithium, suggesting that adjusting their medications may be of greater benefit than impressing on them the need for treatment. Quite plainly, tentative observations of this special subgroup require further assessment with larger patient numbers, but they illustrate the LAQ’s potential use in obtaining standardised attitudinal profiles of clinical relevance. Acknowledgements This article forms part of an MD thesis by N.S. Harvey at the University of Sheffield. The author

218

thanks Dr. R. Kay and Prof. I.R. Dunsmore of the Statistical Services Unit, University of Sheffield, for their statistical advice, and Dr. M. Peet for providing the patients for the study and helping with testing. Thanks are also due to Mrs.

E. Klonecki for her administrative assistance, Mrs. E. Isles for her typing, and Mrs. J. D’Roza, Ms. B. Wilcox and their colleagues, from the Hallamshire Outpatient Department, for their help during the development of the LAQ.

Appendix Lithium Name

Attitudes

Questionnaire

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

.. . . . . . . .. . . . . . .

Date . . . . . . . . . .

Instructions The following questions are concerned with feelings you may have about taking lithium treatment. They apply to your present situation. Please answer yes or no by placing a cross (X > in the appropriate box after each one, to indicate whether or not it applies to you. Do not spend too long on each statement, but please answer every one. Thank you for your co-operation.

YES 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19.

I would find it perfectly acceptable having to take lithium for several years. I take lithium now and then, whenever I feel I need to. It is definitely worth taking lithium despite its side-effects. Taking lithium exactly as prescribed fits in very easily with my daily routine. Finding relief from personal stress is more important than taking lithium in keeping me well. I consider that lithium is at present necessary for my personal wellbeing. I worry about possible side-effects from my lithium tablets, even when I am feeling well. Most people I know would probably be in favour of my taking lithium. I sometimes try to forget I have been ill by taking a break from lithium tablets. I rely on my lithium tablets and if they were stopped for some reason I would be concerned. People often have to remind me to take my lithium tablets. Lithium is just as acceptable to me when I consider the need for repeated blood tests and check-ups. I often think that since taking lithium is an artificial way to keep stable I should be able to do without it. It is very easy to remember to take lithium at the right times. I often doubt that my condition is sufficiently serious to justify the long-term use of lithium. I have an adequate factual knowledge of lithium and its effects. Being well for several months would make me consider coming off lithium. If my daily routine changes for any reason I have difficulty in remembering to take my tablets. I am convinced of the beneficial effects of lithium from my own experience of

B

q q q q q

q q q

E! q q q

219

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Jamison, K.R., Gerner, R.H. and Goodwin, F.K. (1979) Patient and physician attitudes towards lithium. Relationship to compliance. Arch. Gen. Psychiatry 36, 866-869. Kellner, R., Abbott, P., Winslow, W.W. and Umland, B.E. (1983) Hypochondriacal beliefs and attitudes in family practice and psychiatric patients. Int. J. Psychiatry Med. 13, 127-139. Kerry, R.J. (1978) Recent developments in patient management. In: F.N. Johnson and S. Johnson (Eds.), Lithium in Medical Practice. University Park Press, Baltimore, MD pp. 337-353. Lapierre, Y.D., Gagnon, A. and Kokkinidis, L. (1980) Rapid recurrence of mania following lithium withdrawal. Biol. Psychiatry 15, 859-864. Tyrer, S.P. (1983) Dangers of reducing lithium. Br. J. Psychiatry 142, 427. Van Putten, T. (1975) Why do patients with manic-depressive illness stop their lithium? Comp. Psychiatry 16, 179-182. Vestergaard, P. and Amdisen, A. (1983) Patient attitudes towards lithium. Acta Psychiatr. Stand. 67, 8-12. Wallston, B.S., Wallston. K.A., Caplan, G.D. and Maides, S.A. (1976) Development and validation of the health locus of control (HLC) scale. J. Consult. Clin. Psychol. 44, 580-585.