Assessment of depression in adults with severe or profound intellectual disability

Journal of lntellectual & DevelopmentaI Disability, Vol. 24, No. 2, pp. 147-160, 1999

Assessment of depression in adults with severe or profound intellectual disability 1

K. M. EVANS

Stockton Centre, Hunter Region Developmental Disability Service

M. M. COTTON

Depar tmen t of" Psychology, University o f Newcas t le

S. L. EINFELD

T. FLORIO

School of Psychiatry, University of New South Wales

Depression is said to be under-recognised in persons with a severe intellectual disability (ID ) as a result o f difficulties in diagnosis attributable to the inability o f such persons to describe their mood. The main aim of the present study was to examine whether the behavioural criteria for Major Depression (DSM-III-R, American Psychiatric Association, 1987) could be used by nurses to recognise depression in 89 adults with a severe or profound ID living in a large residential centre. Each resident was rated by two nurses (different for each resident). Results indicated that the nurse pairs were reliable in the manner in which they assessed the residents in their care. The study also sought to determine i f a relationship existed between total scores on the DSM-III-R checklist o f behavioural criteria for depression and other observable behaviours not listed by DSM as symptoms o f depression. Results indicated that several behaviours not listed as criteria for major depression in DSM-III-R but listed in the Aberrant Behavior Checklist (Aman & Singh, 1986) and the Developmental Behaviour Checklist (Einfeld & Tonge, 1991) may be associated with the disorder. The suitability o f using DSM criteria to diagnose psychiatric disorders in people with a severe or profound ID is discussed.

~Address for Correspondence: Kim Evans, Stockton Centre, Hunter Region Developmental Disability Service, Stockton, NSW 2295, Australia

1326-978X/99/020147-14 © 1999 Australian Society for the Study of Intellectual Disability Inc.

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148 Evans, Cotton, Einfeld, & Florio

There has been considerable concern in the literature that people with an ID may be suffering from unrecognised depression (Einfeld, 1992; Howland, 1992; Guattieri, 1989; Molony, 1991; Menolascino, Gilson, & Levitas, 1986; Sovner & Hurley, 1983). As a result some individuals continue to suffer from an illness which is not diagnosed and remains untreated (Howland, 1992; Reiss & Benson, 1985; Reynolds & Baker, 1988; Sovner & Lowry, I990).

It has also been frequently asserted in the literature that the recognition and diagnosis of depression in people with a severe or profound ID is difficult (Pirodsky, Gibbs, Hesse, Hsieh, Krause, & Rodriguez, 1985; Sovner & Lowry, 1990; Sovner, 1986; Chandler, Gualtieri, & Fahs, 1988; Einfeld, 1992; Gualtieri, 1989), and that this may account for the presumed under-recognition.

A number of attempts have been made to redress the apparent difficulties in diagnosis. Some scales have been designed specifically to assess depression in people with an ID, or to assess depression as a subscale of a broad based questionnaire regarding psychopathology in people with an ID. These include:

(a) The Self Report Depression Questionnaire (Reynolds & Baker, 1988), which was designed to assess depression in people with a mild or moderate ID, rather than those with a severe or profound ID.

(b) The affective disorders subscale of the Psychopathology Instrument for Mental- ly Retarded Adults (PIMRA) (Matson, 1988; Senatore, Matson, & Kazdin, 1985), which is based on the DSM-III. Several authors have found problems with its inter-rater reliability, internal consistency and validity (Aman, 1991; Vitiello, & Behar, 1992; Watson, Aman, & Singh, 1988). Linaker and Nitter (1990) contend the scale does not assess affective disorders adequately, partic- ularly for people functioning in the profound range of ID .

(c) The Reiss Screen for Maladaptive Behaviour (Reiss, 1988) has subscales "Depression (Behavioural signs)" and "Depression (Physical signs)" and can be used for people with all ranges of ID, but it has validity only as a general screen, not for the diagnosis of individual disorders such as depression (Aman, 1991).

Given that the DSM and ICD are the most widely accepted diagnostic criteria for mental disorders, it is pertinent to ask if the criteria for depression from these classification systems can be reliably rated when applied to people with ID. The need for such evaluation has previously been documented by Einfeld and Aman (1995).

It would be reasonable to presume that a lack of reliability of these diagnostic criteria in persons with an ID would be partly attributable to difficulties in persons with impaired communication skills reporting their mood. In this study, we focus on the DSM-III-R, although the issues are equally pertinent for the ICD. Many of the DSM- III-R criteria and the pages of explanation accompanying these criteria (DSM-III-R, p. 218-222), for Major Depressive Episode axe behavioural and therefore able to be observed by others. It should be noted that DSM-IV was not published at the time of this study, but that the behavioural criteria for the disorder have not changed. If it could be established that significant others could recognise these criteria reliably, this could provide a step towards improving valid recognition of depression in this population.

Another possible reason for lack of recognition of depression is that the disorder may be expressed differently in this population from the normal population (Sovner,

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Depression in adults with intellectual disability 149

1986; Sovner & Lowry, 1990). Lowry (1993) has contended that in persons with an ID, there is a clear link between mood disorders and other problem behaviours.

Symptoms not usually associated with depression in people without an ID which have been cited as being commonly associateA with depression in people with an ID have included: (a) self injurious behaviour (Chariot, Doucette, & Mezzacappa, 1993; Gualtieri, 1989; Hurley & Sovner, 1991; Jawed, Krishnan, Prasher & Corbett, 1993; Kastner, Finesmith, & Watsh, 1993; Luiselli, 1993; Lowry, 1993; Lowry, 1994; Lowry, & Sovner, 1992; Markowitz, 1992; Matson, 1986; Matin & Rundle, 1980; Pirodsky et al., 1985; Ruedrich, Wadle, Sallach, Hahn, & Menolascino, 1987; Rojahn & Dixon, 1989; Sovner, 1986; Sovner & Lowry, 1990; Sovner, Fox, Lowry, & Lowry, 1993); (b) repetitive stereotyped movements (Pirodsky et al., 1985); (c) vomiting (Reid & Leonard, cited in Sovner & Lowry, 1990); (d) temper tantrums (Pirodsky et al., 1985); (e) taking advantage of others, threatening others, getting into arguments (Laman & Reiss, 1987); (f) repetitive screaming (Field,Aman, White, & Vaithianath- an, 1986; Pirodsky et al., 1985); and (g) aggression (Chandler, Gualtieri, & Fahs, 1988; Gualtieri, 1989; Hurley & Sovner, 1991; Lowry, 1994; Reiss & Rojahn, 1993).

It would be valuable to ascertain whether these other behaviours, not included in the DSM criteria, covary with the behavioural criteria for depression from the DSM-III-R.

In this study, it was hypothesised that primary caregivers, namely nurses, will be able to agree on the extent to which people in their care with a severe or profound ID have displayed the behavioural DSM-III-R criteria for Major Depressive Episode during the past four weeks.

Second, it was hypothesised that nurses will be able to rate reliably the behavioural DSM-III-R criteria for Major Depressive Episode displayed during the past four weeks by people in their care who have a severe or profound ID.

Subsequently, the study aims to determine if a relationship exists between total scores on the DSM-III-R checklist of behavioural criteria for Major Depressive Episode and other observable behaviours not listed by the DSM-III-R. In this way it can be determined whether those individuals who display some/many of the behavioural criteria for Major Depressive Episode also display other behaviours in common. Therefore, the third hypothesis was that there will be a significant positive correlation between total scores for residents on the DSM-III-R checklist of the behavioural criteria for Major Depressive Episode and total scores on available measures of behavioural symptoms in this population, namely subscales of the Aberrant Behavior Checklist (Aman & Singh, 1986) and the Developmental Behaviour Checklist - Primary Carer Version (Einfeld & Tonge, 1991).

M E T H O D

Participants

The participants for the present study were 89 adults with an ID (38 male and 51 female; age range 18 years, 5 months to 51 years, 4 months; mean age 33 years, 5 months) residing permanently at Stockton Centre, a division of the Hunter Region

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Developmental Disability Service. All functioned in the severe or profound range of ID and required 24 hour care. Results of formal intellectual testing contained in residents' files indicated an IQ score within the severe or profound range. For some residents formal IQ testing had been attempted but was unsuccessful because of the person's lack of verbal skills, extremely limited attention span and inability to under- stand simple requests. These residents were therefore considered also to be functioning in the severe or profound range. All needed assistance to perform activities of daily living ranging from verbal prompts and reminders through to full physical assistance. Thirty-four residents lived in small cottages housing six to eight residents each. Fifty-five lived in large units housing between 24 and 38 residents each. Of the 89 residents, 46% were on no psychoactive medication, 35% were receiving anticon- vulsant medication and 26% were receiving psychoactive medication for the purposes of assisting to manage challenging behaviour.

Selection of residents and raters

Residents were eligible for inclusion in the study if (a) they were functioning in the severe or profound range of ID; (b) they were not receiving anti-depressant medication; and (c) two nurses could be found who knew the resident well, could state with confidence what his/her behaviour had been like during the previous four weeks and were willing to participate in the study. Random selection of residents then took place from the group of residents who met this criteria. In almost all cases, raters had been a primary caregiver for the resident for at least six months, and many had cared for the resident/s they rated for several years. All were registered or enrolled nurses. In total, 62 different nurse raters participated.

Materials

Residents were assessed using the behavioural criteria for Major Depressive Episode as specified in the DSM-III-R (1987). The criteria were taken from the Diagnostic Criteria for Major Depressive Episode (DSM-III-R, p. 222-223) and also from the accompanying pages which provide an expanded list of the criteria for this disorder (DSM-III-R, p. 218-222). Criteria listed as commonly seen in adolescents and children were also included (Szymanski & Biederman, 1984). Only the behavioural criteria for this disorder were included in the checklist since these are the only ones which can be directly observed by others. In total, 38 observable items were obtained and listed in checklist form. The checklist used a seven point rating scale (Durand & Crimmins, 1988), where: 0 = never; 1 -- almost never; 2 = seldom; 3 = half the time; 4 = usually; 5 = almost always; 6 = always. The items are listed in Table 1.

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Table 1


List of items derived from DSM-111-R

1. Irritable 2. Slowed body movements (not due to physical disability) 3. Looks sad, depressed or unhappy 4. Withdraws from contact with others 5. Inability to sit still 6. Pacing 7. Handwringing 8. Pulling or rubbing hair or other objects 9. Tearful

10. Complains of being sick 11. Aggressive 12. Reacts negatively or shyly to praise 13. Disoriented 14. Inattentive 15. Difficulty falling asleep 16. Wakes up during the night and has difficulty going back to sleep 17. Wakes up early in the morning 18. Sleeping time has been longer than usual 19. Sleepy during the daytime 20. Takes lots of naps 21. Has lost interest or pleasure in activities they once enjoyed 22. Has low energy levels 23. Easily fatigued 24. Looks anxious 25. Has phobias about some things 26. Displays antisocial behaviour 27. Sulks 28. Reluctant to cooperate 29. Withdraws from social activity 30. Likes to be on his/her own 31. Reluctant to use self care skills they do have 32. Responds to positive relationships with negative behaviours 33. Increase in appetite 34. Decrease in appetite 35. Difficulty making choices 36. Memory loss 37. Weight gain 38. Weight loss

Residents were also assessed using the Aberrant Behaviour Checklist (ABC) (Aman & Singh, 1986) and the Developmental Behaviour Checklist - Primary Carer Version (DBC-P) (Einfeld & Tonge, 1994). These instruments are broad range measures of psychopathology in persons with an ID, with items covering 65 and 96 behaviours respectively. They were selected because they were recommended on the basis of their

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psychometric properties and utility in the extensive review of instruments for assessment of psychopathology and behaviour disturbance in persons with an ID conducted by Aman (1991).

Procedure

For each resident, two nurses completed the DSM-III-R (1987) checklist of the behavioural criteria for Major Depressive Episode. The nurses were blind to each other's ratings and to the exact purpose of the study. They were asked to rate what the resident's behaviour had been like for the previous four weeks. A four week period was chosen because (a) it was a relatively short period of time across which nurses were asked to remember how those in their care had behaved; and (b) it is the duration of the nursing roster at the Centre which means that over this period, nurses would have had the opportunity to observe both day and night time behaviours.

Following completion of the DSM-III-R checklist, analyses were carried out to determine the inter-rater agreement and inter-rater reliability of the data provided by the nurses.

If the two nurse raters for each resident demonstrated both inter-rater agreement greater than 70% and significant inter-rater reliability, then within seven days, one of the raters completed an ABC and the other rater completed a DBC-P for that resident.

The scores for each subscale of the ABC and the DBC-P were calculated. These were correlated with the total scores for residents on the checklist of behavioural DSM-III-R (1987) criteria for Major Depressive Episode given by each nurse of the nurse rater pairs to determine if a relationship existed between them.

RESULTS

Data from the present study were analysed to determine inter-rater agreement and inter-rater reliability and are presented separately below.

Inter-rater agreement

In order to evaluate the first hypothesis, data were analysed to determine the level of inter-rater agreement between the nurse raters on the checklist of the DSM-III-R behavioural criteria for Major Depressive Episode.

Inter-rater agreement was calculated according to the methods described by Foxx (1982) and Zarcone, Rodgers, Iwata, Rourke, and Dorsey (1991). In the present study it was decided to examine both strict (identical) and lenient (adjacent) agreement between raters to obtain an unambiguous description of the data (Zarcone et al., 1991 ). Agreement between raters greater than 70% is generally considered acceptable (Foxx, 1982) and was the criterion adopted for the present study.

Results of the present investigation revealed that in terms of adjacent (lenient) agreement, 73 of 89 pairs of raters (82.0%) had agreement greater than 70%, and 55 of the 89 pairs of raters (61.8%) had agreement greater than 80%.

As would be expected, when a strict criterion of inter-rater agreement was era-

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ployed, the degree of agreement decreased. Specifically, for strict (identical) inter- rater agreement, 16 out of the total 89 pairs of nurse raters (18.0%) had agreement greater than 70%, and 8 out of the total 89 pairs (9.0%) had agreement greater than 80%.

Overall, these results indicate that the agreement between the nurse rater pairs is quite high. Specifically, when a lenient method of agreement is used, 82% of the nurse rater pairs had satisfactory agreement (using the criterion of Foxx, 1982).

Inter-rater reliability

To evaluate the second hypothesis, data were analysed to determine the inter-rater reliability of the nurse raters on the DSM-III-R checklist of the behavioural criteria for Major Depressive Episode (i.e. the degree to which the ratings of the two nurses for each resident were proportional when expressed as deviations from their means using the technique of Tinsley & Weiss, 1975). The inter-rater reliability was calculated using the intraclass correlation coefficient (ICC) (Bartko, 1976; Einfeld & Tonge, 1994; Martin, Haroldson, & Triden, 1984; Ottenbacher & Cusick, 1991; Shrout & Fleiss, 1979; Taylor, Rea, McNaughton, Smith, Mulder, Asher, Mitchell, Seelve, & Stewart, 1991; Tinsley &Weiss, 1975) using software developed by Chambers (1992). This technique is based on generalisability theory (Berk, 1979) and uses an analysis of variance procedure to determine the proportion of the total variance in a set of ratings due to the variance in the samples being rated (Martin et al., 1984). There are several versions of the intraclass correlation. Two versions were used in this study.

The first version was used to determine the overall reliability of the 89 pairs of nurses. The version corresponds to the one-way random effects model, ICC(1,1), outlined by Shrout and Fleiss (1979). Results indicated that the ICC for the 89 pairs of nurse raters was .50 which was significant at p < .01. This indicates that nurses were reliable in their ratings of the manner in which those in their care had displayed the behavioural criteria for Major Depressive Episode. A second version of the ICC was used to determine the reliability of each pair of nurse raters separately. This was necessary in order to analyse data for the second part of the study. The version of the ICC appropriate tbr this corresponds to the random effects two-way analysis of variance model, ICC(2,1) outlined by Shrout and Fleiss (1979). Results indicated that 66 of the 89 pairs of raters (74%) had an intraclass correlation coefficient which was significant at p < .05. The average intraclass correlation coefficient was .51, with a range of .00 to .96.

These results suggest that, in the present study, nurse raters can be regarded as having a high level of agreement and as having high reliability in the manner in which they rate the behavioural criteria for Major Depressive Episode displayed by residents with a severe or profound ID in their care.

In order to evaluate the subsequent aim of the study results, needed to determine which nurse pairs had both an acceptable level of agreement and a significant coefficient of reliability. Results indicated that overall, 56 of 89 pairs of nurse raters (63%) had both acceptable inter-rater reliability and inter-rater agreement.

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Correlation between total scores for the DSM-III-R checklist of the behavioural criteria for Major Depressive Episode and total scores on subscales of the ABC

Pearson's r correlation coefficients were calculated between total scores obtained on the DSM-III-R checklist and the five subscales of the ABC.

Table 2

Pearson's r coefficients for correlations between total scores on the DSM-III-R checklist and total scores for each subscale of the ABC.

ABC subscale Pearson's r

Irritability (I) +.50** Lethargy (II) +.44** Sterotypy (III) +.40* Hyperactivity (IV) +.41"* Speech (V) +.01

*~ p<.001 * p< .01

As can be seen from Table 2, there was a significant positive correlation between total scores on the DSM-III-R checklist and subscales I (Irritability), II (Lethargy), III (Stereotypy), and IV (Hyperactivity) of theABC. There was no significant correlation between total scores on the DSM-III-R checklist and subscale V (Speech) of theABC.

Subsequent to this analysis, further analyses were carried out to determine if the significant correlations were due to items common to both the DSM-III-R checklist and the ABC (i.e., to content overlap of the two scales). Consequently, items from the ABC which were also items on the DSM-III-R checklist were removed, total scores on the subscales adjusted accordingly and correlations between the scales re-determined.

From subscales I (Irritability), II (Lethargy), and IV (Hyperactivity) 4, 8, and 13 items respectively were found to be present in the DSM-III-R checklist. The Pearson's r coefficients for the correlations between total scores on the DSM-III-R checklist of the behavioural criteria for Major Depressive Episode and the adjusted total scores for subscales I, II, and IV of the ABC can be found in Table 3.

Table 3

Pearson's r coefficients for correlation between DSht-III-R checklist total scores and total scores for subscales of the ABC, with scores for common items removed from ABC subscale totals

ABC subscale Pearson's r

Irritability (I) +.49** Lethargy (II) +.43** Hyperactivity (IV) +.37 **

** p<.001

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As can be seen from Table 3, there was a significant positive correlation between total scores on the DSM-III-R checklist and subscales I (Irritability), II (Lethargy) and IV (Hyperactivity) of theABC. This indicates that significant correlations between the two checklists were not due to the fact that they contained items in common.

Subscale III (Stereotypy) of the ABC contained no items which were found in the DSM-III-R checklist and therefore no further analysis was necessary. Subscale V (Speech) total scores did not correlate positively with DSM-III-R checklist total scores and hence no analysis was necessary.

Correlation between DSM-III-R checklist of the behavioural criteria for Major Depressive Episode total scores and total scores for subscales of the DBC-P

Pearson's r correlation coefficients were also calculated between total scores on the DSM-III-R checklist and the six subscales of the DBC-P.

Table 4

Pearson's r coefficients for correlation between DSM-III-R checklist total scores and total scores for subscales of the DBC-P

DBC-P subscale Pearson's r

Disruptive (1) +.30 Self-absorbed (2) +.38" Communication disturbance (3) +.05 Anxiety (4) +.32* Autistic relating (5) +.44** Antisocial (6) +.05

** p<.001 * p < . 0 t

It can be seen from Table 4 that there was a significant positive correlation between total scores on the DSM-III-R checklist and subscales 2 (Self-absorbed), 4 (Anxiety) and 5 (Autistic Relating) of the DBC-P. There were no significant correlations between total scores for the DSM-III-R checklist and subscales 1 (Disruptive), 3 (Communication Disturbance) and 6 (Antisocial) of the DBC-P. As was the case previously, items common to the DBC-P and the DSM-III-R checklist were removed and data reanalysed. Subscales 1 (Disruptive), 3 (Communication Disturbance) and 6 (Antisocial) of the DBC-P did not correlate positively with the DSM-III-R checklist total scores and hence no analysis was necessary. For subscales 2 (Self-absorbed), 4 (Anxiety) and 5 (Autistic Relating) of the DBC-P, two, six and four items respectively were found to be present in the DSM-III-R checklist. The scores for these items were removed from the total scores for each subscale and new totals calculated. The Pearson's r coefficients for the correlations between the adjusted totals for subscales 2, 4 and 5 are found in Table 5.

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Table 5

Pearson's r coefficients for correlations between DSM-III-R checklist total scores and total subscale scores for the DBC-P, with common items removed from the DBC-P subscale scores

DBC-P subscale Pearson's r

Self-absorbed (2) +.40* Anxiety (4) +.23 Austistic relating (5) +.37*

* p<.01

As can be seen fromTable 5, there were significant positive correlations between the adjusted totals for subscales 2 (Self-absorbed) and 5 (Autistic Relating) of the DBC- P and the DSM-III-R checklist total scores.

Results indicate an overall significant and positive relationship between total scores for residents on the DSM-III-R checklist of the behavioural criteria for Major Depressive Episode and scores on certain subscales of the ABC and DBC-P.

DISCUSSION

Results provide support for the first two hypotheses. The majority of nurses were able to agree on the extent to which people with a severe or profound ID in their care had displayed the behavioural DSM-III-R criteria for Major Depressive Episode during the past four weeks. They could also reliably recognise these criteria. That is, acceptable levels of inter-rater reliability and inter-rater agreement were obtained.

Using percentage agreement greater than 70% (Foxx, 1982) and a lenient (adjacent) method of calculation (Zarcone et al., 1991), 82% of the nurse rater pairs displayed inter-rater agreement. The inter-rater reliability of the nurses was .50, which was significant at p < .01.

The study therefore adds support for the use of and reliance upon nursing evalua- tions of a resident's behaviour Nurses who participated in this study were a vital part of the environment of all aspects of the residents' lives. If reliable and accurate information is not provided by caregivers, incorrect and possibly detrimental decisions and plans may be made for that individual. The results of this study suggest that if one collects information from nurse primary caregivers, the DSM-III-R is a suitable instrument for examining the behavioural criteria for Major Depressive Episode in adults with a severe or profound ID living in large residential centres.

Results supported the third hypothesis, indicating there was a significant positive correlation between total scores for residents on the DSM-III-R checklist of the behavioural criteria for Major Depressive Episode and total scores on certain subscales of the Aberrant Behaviour Checklist (Aman & Singh, 1986) and the Developmental Behaviour Checklist-Primary Carer Version (Einfeld & Tonge, 1991).

The results suggest, as other researchers have claimed, that disorders such as depression may present differently in people with a severe or profound ID than they do in people without disability. Some authors have suggested that repetitive stereotyped movements and depression may be related (Pirodsky et al., 1985). Results of this

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Depress ion in adults with intellectual disabili ty 157

study support this association. Specifically, subscale III (Stereotypy) of the ABC and subscale 2 (Self-absorbed) of the DBC-P, both of which contain items related to stereotypic behaviom, correlated significantly with total scores on the checklist for Major Depressive Episode.

As described in the Introduction, many authors have suggested that self-injurious behaviour (which includes behaviours such as head banging, pica, picking and scratching wounds) is associated with depression. Results of this study indicated that self-injurious behaviour may indeed be associated with depression. Self-injury was included in various subscales which correlated significantly and positively with total scores on the DSM-III-R checklist tbr Major Depressive Episode, specifically subscale I (Irritability) of the ABC and subscale 2 (Self-absorbed) of the DBC-P.

Pirodsky et al. (1985) found temper tantrums and depression were related and Field et al. (1986) and Pirodsky et al. (1985) have suggested that depression may be associated with screaming. Screaming and temper tantrums were items which were included in subscales I (Irritability) of the ABC and 2 (Self-absorbed) of the DBC-P.

Results of this study have provided some support for the views of Ballinger, B allinger, Reid, and McQueen (1991), Feinstein, Kaminer, Barrett, andTylenda (1988), Lund (1985) and Russell (1989), who suggested that the application of standard psychiatric criteria to people with an ID may be a better option than developing a completely different diagnostic system. However, as suggested by Einfeld and Aman (1995), the standard criteria may require modification for use in this population.

Further research will be required to determine if these additional symptoms repre- sent comorbidity or an extended symptom spectrum of depression.

Overall, this study contributes empirical data to support the challenge of develop- ment of a taxonomy of psychopathology in persons with a severe or profound intellectual disability.

Acknowledgments

Our sincere thanks go to the nursing staff o f Stockton Centre for their willingness to participate in the study. Thanks also to Darryl Taylor who assisted with editing.

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Documents

Assessment of depression in adults with severe or profound intellectual disability