WHILE RESEARCH has failed to support the view that. Anxiety and Depression After Spinal Cord Injury: A Longitudinal Analysis

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1 932 Anxiety and Depression After Spinal Cord Injury: A Longitudinal Analysis Paul Kennedy, DPhil, Ben A. Rogers, BSc ABSTRACT. Kennedy P, Rogers BA. Anxiety and depression after spinal cord injury: a longitudinal analysis. Arch Phys Med Rehabil 2000;81: Objective: To examine the prevalence of anxiety and depression longitudinally in a sample of patients with a spinal cord injury (SCI). Design: A prospective, longitudinal, multiple wave panel design with measures taken on 14 observational periods ranging from initial contact in the acute stages of hospitalization to 2 years postdischarge to the community. Setting: The National Spinal Injuries Centre, Stoke Mandeville Hospital, Aylesbury, UK, and the general community. Participants: The cohort consisted of 104 patients with traumatic SCI (19 women, 85 men), although the numbers assessed at each interval ranged from 5 to 85. Main Outcome Measures: Measures included the Beck Depression Inventory, the Beck Hopelessness scale, the State Anxiety Inventory, the functional independence measure, and the Social Support Questionnaire. Results: When examined longitudinally, the data illustrate a consistent pattern of results across measures, with scores highest in the acute phase of the injury and during the months leading up to discharge. Conclusion: The numbers of persons scoring above clinical cut-off scores for anxiety and depression highlight the need to continue to ensure that appropriate psychological care is available within SCI rehabilitation settings. Moreover, the nature of the longitudinal results provides an indicator of subtle changes in anxiety and depression over time. Key Words: Anxiety; Depression; Spinal cord injuries; Longitudinal studies; Rehabilitation by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation WHILE RESEARCH has failed to support the view that adjustment to spinal cord injury (SCI) is accompanied by depression, 1 early studies identified as many as 100% of SCI patients suffering from deep depression. 2 Researchers at this time suggested that after a SCI, patients must suffer from depression to achieve healthy adjustment, and that for a patient not to demonstrate depression is an indication of denial. 3,4 Indeed, it has been proposed that depression should be induced in nondepressed patients so that appropriate grieving be initiated. 5 From the National Spinal Injuries Centre, Stoke Mandeville Hospital, Aylesbury, Bucks, UK, and the Oxford Clinical Psychology Doctorate, Isis Education Centre, Oxford, UK (Kennedy); and the University of Southampton, UK (Rogers). Submitted July 1, Accepted in revised form October 27, No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the authors or upon any organization with which the authors are associated. Reprint requests to Paul Kennedy, DPhil, Department of Clinical Psychology, National Spinal Injuries Centre, Stoke Mandeville Hospital NHS Trust, Mandeville Road, Aylesbury, Bucks, HP21 8AL, UK /00/ $3.00/0 doi: /apmr Stage models of adjustment to SCI propose that depression is one of a number of phases occurring in a specific temporal sequence through which a patient must pass to attain appropriate adjustment to the injury. Models have comprised two, 6 three, 7 four, 8 and five 9 stages. However, little empirical validation supports the existence, sequence, and duration of these stages, 10,11 and the underlying assumptions of these models are not related to contemporary theories of depression. 12 A critical implication of these studies is that the injury itself is the primary factor influencing postinjury behavior, and that as a result of this assumption, premorbid personality characteristics and postinjury situational differences are considered secondary to the injury. 1 There is a need to consider phenomenological stressors other than the SCI when considering the nature of depressive behavior in SCI rehabilitation. 13 In stark contrast to those investigations that have identified depression and anxiety not only as inevitable but also as necessary for adjustment, more recent empirical research has found little evidence for these claims. Using the Schedule of Affective Disorders and Schizophrenia 14 Howell and colleagues 15 conducted an assessment of 22 patients who had been injured for 6 months or less, finding that only 22.7% of them were experiencing some depressive disorder. This was compared with a control group taken from the urban community in which only 5.7% of people were found to be experiencing depressive episodes. In a follow-up of this study, 16 the sample size was expanded to 30, and patients were evaluated for current and previous mental disorders. Thirty percent of the sample qualified for a depressive disorder that had developed after the SCI. Incorporating a semistructured interview that permitted diagnosis by Diagnostic and Statistical Manual (DSM) III criteria with a sample of 32 patients, Frank and associates 17 identified that 44% of these patients met criteria for a depressive episode. Thus, while studies have illustrated that depression and anxiety is identifiable after SCI, and is higher than levels found in the general population, it is not an inevitable reaction to the injury. Studies have demonstrated not only that depression is not an inevitable reaction to injury, but also that it is not a necessary facet of rehabilitation, as proposed by stage theories. Depressive symptoms have been associated with increased stays in hospital, 18 fewer functional improvements in SCI rehabilitation, 18 and increased mortality and morbidity. 19 Moreover, it has been demonstrated that depressed individuals are less able to perform activities of daily living than are patients with chronic medical conditions such as diabetes or arthritis. 20 A primary criticism of existing SCI literature has been the apparent lack of longitudinal research investigating depression and anxiety. 13,21 Indeed, the necessity of future studies that adopt a more longitudinal method of inquiry has been emphasized. 22 To address this issue, Kennedy et al 23 cross-sectionally examined the psychological impact associated with SCI in a group of individuals 6 weeks after injury, and those 4 and 7 years postinjury. No significant differences were found between the groups for scores of psychological impact including depression, hopelessness, anxiety, and distress.

2 ANXIETY AND DEPRESSION AFTER SCI, Kennedy 933 Using a longitudinal analysis, Bracken and Shepard 9 examined anxiety and depression in SCI over the first 4 years following injury, finding only moderate changes over time that were generally in a positive direction. However, the use of one-item questions to measure affective reactions does not provide an empirically sound basis for comparison. Hancock and associates 21 conducted a longitudinal study investigating 41 patients who had recently been mobilized after acute SCI and 41 non-sci matched controls. The Beck Depression Inventory (BDI) and the Speilberger State Trait Anxiety Inventory were implemented. Results demonstrated significantly higher levels of depression and anxiety in the SCI group, although psychological morbidity was not considered to be an inevitable consequence of SCI. Moreover, no significant differences were found across time for either anxiety or depression, suggesting that SCI patients remained at a higher level of anxiety and depression than the matched controls. In a 1-year extension of this study, 24 no significant improvement was identified in the depression and anxiety scores illustrated for the SCI group, and no significant differences were identified in scores over time. It is concluded that psychological morbidity was confined to approximately 30% of the SCI group. In contrast to these findings, Richards 25 identified that immediately postdischarge, SCI patients were significantly more depressed than were controls; within 3 months of discharge, this difference was nonsignificant. The evidence presented identifies a greater existence of anxiety and depression in individuals who have sustained a SCI than in individuals in the general population. However, few of these studies examine scores across time, and those that do present conflicting findings. This study aims to investigate longitudinally the existence of anxiety and depression in a group of newly injured SCI patients and to examine the prevalence of these variables over time. METHODS Participants The sample group comprised 104 patients (19 women, 85 men) admitted to a national rehabilitation center for traumatic SCI between 1990 and Inclusion criteria required that participants were between 16 and 64 years old when injured, were not overseas patients, and had experienced a traumatic onset of the SCI. Complete tetraplegic injuries accounted for 24.2% of injuries, incomplete tetraplegic injuries accounted for 19.8%, complete paraplegic injuries accounted for 41.8%, and incomplete paraplegic injuries accounted for 14.3%. Follow-up took place during respondents early treatment through rehabilitation and after discharge. Observational points were at the following times: initial week of admission, n 32; at 6 weeks postinjury, n 79; at 12 weeks postinjury, n 85; at 18 weeks, n 65; at 24 weeks, n 40; at 30 weeks, n 31; at 36 weeks, n 14; at 42 weeks, n 7; at 48 weeks, n 5; at 1 month postdischarge, n 52; at 3 months postdischarge, n 29; at 6 months, n 40; at 1 year postdischarge, n 46; and at 2 years postdischarge, n 36. Participants were interviewed by trained researchers during their rehabilitation and sent questionnaires after discharge. Note that postinjury refers to the hospitalized group, and postdischarge relates to respondents in the community. Measures Neurologic impact. Neurologic impact of the injury was assessed using a specially devised 5-point scale based on the Frankel classification. 26 Incomplete lesions (Frankel grades D and E) scored zero, while complete lesions (Frankel grades A, B, and C) were rated as follows: down to C4 5; C5 to C7 4; C8 to T7 3; T8 to T12 2; L1 and below 1. The boundaries were chosen so to be clinically and functionally significant. Dependency: functional independence measure. 27 The 18 items in the functional independence measure (FIM) are evaluated on a 7-point scale, with 7 being complete independence and 1 being total assistance. This provides a range of scores ranging from 18 (maximal dependence) to 126 (maximal independence). It is a standardized and internally consistent functional status measure 28 that assesses six areas of function: self-care activities, sphincter control, mobility, locomotion, communication, and social cognition, and has been used in the literature with a similar population of SCI patients. 23 Psychologic impact. Depression was measured using the BDI, 29 and anxiety was measured using the State Anxiety Inventory (SAI) (Form Y). 30 These scales have been successfully used in the literature to assess psychologic adjustment to injury and trauma, 23,24,31 and while there is some indication that the BDI may inflate estimates because of the somatic based items, 32 it has been shown to be generally reliable. 33 Social support: Social Support Questionnaire. 34 This Social Support Questionnaire provides two measures of social support: quantity (SSQN) and levels of satisfaction (SSQS). It is a reliable, psychometrically satisfactory instrument. 35 (This was administered on weeks 6, 12, and 18 only as a result of specific feedback from participants about excessive repetition). Procedure Patients were approached shortly after their admission to the rehabilitation center at a time when each participant was medically stable. They were provided with a summary of the study and asked to consider their participation in the study for 24 hours before signing the consent form. In the rehabilitation center, patients were administered questionnaires in face-toface interviews conducted by a psychologist. The questionnaires were completed every 6 weeks until discharge. After discharge, participants were sent questionnaire booklets to complete themselves at 1 month, 3 months, 6 months, 1 year, 2 years, and 3 years postdischarge. Those persons who required assistance in completing the questionnaire were requested to engage the help of their appropriate personal assistant. A number of participants withdrew from the study while it was in progress, and others failed to return the postal questionnaires. We followed up with these persons by a further letter and subsequent telephone call. The procedures described were in accordance with the ethical standards of Aylesbury Vale Local Research Ethics Committee. Data Analysis Two broad statistical analyses were performed on the data. Primarily, to illustrate the prevalence of anxiety and depression after SCI, means, standard deviations (SDs), and graphical representation of the data have been illustrated longitudinally, and where necessary, t tests were incorporated. Second, all variables were intercorrelated to produce a guide to the associations. Because of the nature of the multiple wave panel design used (ie, the same participants did not necessarily complete measures for every data collection point), it was not possible to conduct repeated-measures analysis of variance (ANOVA) to assess the stability of anxiety and depression across time.

3 934 ANXIETY AND DEPRESSION AFTER SCI, Kennedy RESULTS Anxiety and Depression Graphical representation of BDI scores reveals a significant pattern, whereby scores of depression show a gradual increase between weeks 24 (at which time the mean BDI score was 11) and 48 (when a mean score of 21 was identified). Following discharge, these scores decrease significantly and remained below the clinical cut-off score ( 14) for months 1, 3, and 6, and years 1 and 2 (fig 1). SAI scores showed a similar pattern to those described above, in that there existed a conspicuous increase between weeks 24 (SAI 42) and 48 (SAI 51) (fig 2). Again, this is followed by a significant reduction in scores after discharge, which remained below the clinical cut-off score ( 48) for months 1, 3, and 6, and years 1 and 2. It is noteworthy that for both the BDI and SAI, scores were slightly higher in the initial week than in weeks 6 to 18 (figs 1,2). The greatest percentage of participants scoring above the clinical cut-off score for the BDI ( 14) occurred during week 48 postinjury, at which time 60% (n 3) of the participants who had returned questionnaire booklets scored above the clinical cut-off score for depression (fig 3). The pattern of results replicates those illustrated for depression in figure 1. Figure 4 shows that the time at which the greatest percentage of participants scored above the clinical cut-off score ( 48) for anxiety was at week 48 postinjury. The spread of scores generally replicates those seen in figure 2. Furthermore, as observed in figures 1 and 2, a tendency can be seen in figures 3 and 4 for scores at the initial week to be slightly higher than scores in weeks 6 to 18. Social Support The numbers of social support as measured by the SSQN remained stable across weeks 6 (mean 26.4), 12 (mean 21.6), and 18 (mean 22.6). This was also found to be the case for SSQS, quality of social support, which remained Fig 2. Mean SAI scores. stable across weeks 6 (mean 5.4), 12 (mean 5.7), and 18 (mean 5.4). Functional Independence Inspection of the mean FIM scores illustrated in figure 5 reveals improvement in function independence over time. This begins to level off at the first month after discharge and remains relatively stable during the remaining time points postdischarge. Correlations The multiple correlations in table 1 illustrate a number of salient issues. Primarily, highly significant correlations were found between mean depression and anxiety scores. The SSQN indicated produced nonsignificant, negative correlations with Fig 1. Mean BDI scores. See text for numbers of respondents for each observational period. Fig 3. Percentage of participants scoring above clinical cut-off for BDI.

4 ANXIETY AND DEPRESSION AFTER SCI, Kennedy 935 Table 1: Intercorrelations of Experimental Variables BDI SAI SSQN SSQS FIM Length of Stay Depression (BDI).823* * * Anxiety (SAI) * * Numbers of social support (SSQN).314* Quality of social support (SSQS) Functional independence (FIM).469* Length of stay * p.01. p.05. Fig 4. Percentage of participants scoring above clinical cut-off for SAI. all other variables. However, the SSQS indicated was found to be significantly, negatively correlated with anxiety, depression, and numbers of social support. Functional independence was found to be negatively correlated with depression. Length of stay was found to be highly correlated with depression (r(90).417, p.01) and anxiety (r(90).383, p.01), suggesting that the longer subjects stayed in hospital, the more depressed and anxious they became. Moreover, length of stay was negatively correlated with functional independence (r(90).469, p.01). DISCUSSION The mean scores of anxiety and depression obtained illustrate a specific pattern in mood during the first 2 years after a traumatic SCI. In the acute phase of hospital care, between the initial week of contact and week 18, there was a modest Fig 5. Mean FIM scores. decrease in scores of anxiety and depression. At week 18, a gradual increase commenced whereby scores rose steadily to a peak at week 48, at which time mean scores were above the clinical cut-off for both the BDI and SAI. Following discharge, scores decreased notably to within a similar, though slightly lower, range as identified in the acute phase of care. This distinctive pattern in mood may in part be the result of length of residence in a hospital environment; the high correlation found between length of stay and BDI and SAI scores suggests that the longer subjects stayed in a hospital environment, the more depressed and anxious they became. After discharge from the hospital, a significant reduction in mean scores was observed. The general stability in psychological impact variables corroborates existing research in this field, 9,21,23,24 which suggests that there are few differences in anxiety and depression over time and those that are identified are subtle at best. However, a nonsignificant downward trend was observable in both the mean and cut-off data for the postdischarge period, suggesting a positive outcome for measures of psychologic impact over time. There was some slight empirical indication that the longer subjects stayed in the hospital environment, the more depressed and anxious they became; this is in line with existing research. 18 There are a number of potential limitations in a study of this kind, the main issues being associated with attrition. In using a multiple wave panel design, the strength of results is in part dependent on the number of participants willing to participate at each data collection point. In this study, the relatively small number of people consistently participating prevented the completion of repeated-measures ANOVAs, because this statistical test requires that data are present for the same participants across all conditions. While this problem precluded the use of repeated-measures analyses, a longitudinal design of this type will inevitably encounter difficulties associated with attrition, because it is extremely unlikely that all participants will be able or willing to complete questionnaires at every data collection point over 2 years. Second, there are a number of methodologic problems associated with the measurement of depression. Although the BDI has been used successfully with SCI populations, it is suggested that the use of standardized rating scales such as the BDI in spinal cord injured populations is inappropriate, because these instruments contain somatic items. 32 Alternative scales are suggested that omit such factors. However, while the use of measures of general psychologic distress may lack

5 936 ANXIETY AND DEPRESSION AFTER SCI, Kennedy specificity for diagnostic purposes in SCI populations, the BDI can be used for screening purposes. 1 A number of clinical implications are indicated in these results. Primarily, the finding that scores of anxiety and depression exceeding clinical cut-off points were prevalent across time emphasizes the need for appropriate psychologic care to be available within both SCI rehabilitation and community settings. This is particularly meaningful in light of the subtle longitudinal differences ascertained from the data. From week 30 onward, mean scores for depression, anxiety, and hopelessness increase until discharge. This may suggest that this is an important time for possible psychologic intervention and monitoring, because it is a time at which anxiety and depression are both relatively high. However, because the changes indicated in the data are slight, the stability of scores across time allows the clinician to make an assessment of the individual in the early stages of rehabilitation that may indicate the level of anxiety and depression spanning rehabilitation. A final clinical implication is drawn from the slight indication that the longer patients remain in hospital, the more depressed and anxious they become. There is a need to examine the role of the hospital environment as a contributing factor in depression and anxiety. This may also reinforce the need to promote rehabilitation away from the hospital environment. However, we acknowledge that that in some health care systems, the length of stay in a hospital environment is much shorter. The problems associated with this study and implications highlighted by its findings indicate a number of issues that should be addressed by future research. Principally, while studies have ascertained that anxiety and depression are more prevalent in SCI populations than in the general population, few studies have provided an empirical analysis of why this difference is identified. In providing effective psychologic care for those people who have anxious or depressive symptoms after SCI, further studies are required to identify the causes of such symptoms after a traumatic SCI, by identifying vulnerability and risk factors. More detailed assessment is required for socioeconomic, demographic, personality, and comorbidity variables. Second, the criticism that the use of standardized rating scales such as the BDI in spinal cord injured populations is inappropriate 32 highlights the need for the use of rating scales that omit somatic factors in future research. Most appropriate would be a psychologic tool specifically developed to measure anxiety and depression in spinal cord injured populations. Finally, the problem of attrition, it is suggested, cannot be avoided in a study design of this kind. Future studies might therefore use a larger sample size and complete longitudinal analyses using only those participants who have provided data for each collection point. In conclusion, this study responds to the reported need for longitudinal research investigating anxiety and depression after SCI. 13,21,22 The results illustrate the prevalence of anxiety and depression within this group, and highlight a specific pattern in mood during hospitalization and the first 2 years following discharge. The authors thank all the patients who cooper- Acknowledgment: ated in this study. References 1. Frank RG, Elliott TR, Corcoran JR, Wonderlich SA. Depression after spinal cord injury: is it necessary? Clin Psychol Rev 1987;7: Wittokower ED, Gingras G, Mergler L, Wigdor B, Lepine MA. A combined psychosocial study of spinal cord lesions. Can Med Assoc J 1954;71: Nagler B. Psychiatric aspects of spinal cord injury. Am J Psychiatry 1950;107: Siller J. Psychological situation of the disabled with spinal cord injuries. Rehabil Lit 1969;30: Nemiah JC. The psychiatrist and rehabilitation. Arch Phys Med Rehabil 1957;38: Guttmann L. Spinal cord injuries: comprehensive management and research. 2nd ed. Oxford: Blackwell Scientific; Stewart T. Coping behavior and the moratorium following spinal cord injury. Paraplegia 1977;15: Rigoni H. Psychological coping in the patient with spinal cord injury. Boston: Little, Brown; Bracken M, Shepard M. Coping and adaptation to acute spinal cord injury: a theoretical analysis. Paraplegia 1980;18: Morris J. Psychological and sociological aspects of patients with spinal cord injuries. In: Frankel HL, editor. Handbook of clinical neurology: spinal cord trauma. London: Elsevier; p Wortman CB, Silver RC. The myths of coping with loss. J Consult Clin Psychol 1989;57: Woodbury B. Interaction in a spinal cord injury center: the task of the psychologist. Rehabil Psychol 1975;22: Elliott TR, Frank RG. Depression following spinal cord injury. Arch Phys Med Rehabil 1996;77: Endicott J, Spitzer RL. A diagnostic interview: the schedule for affective disorders and schizophrenia. Arch Gen Psychiatry 1978; 35: Howell T, Fullerton DT, Harvey RF, Klein M. Depression in spinal cord injured patients. Paraplegia 1981;19: Fullerton DT, Harvey RF, Klein MH, Howell T. Psychiatric disorders in patients with spinal cord injury. Arch Gen Psychiatry 1981;32: Frank RG, Kashani JH, Wonderlich SA, Lising A, Visot LR. Depression and adrenal function in spinal cord injury. Am J Psychiatry 1985;142: Malec J, Neimeyer R. Psychologic prediction of duration of inpatient spinal cord injury rehabilitation and performance of self-care. Arch Phys Med Rehabil 1983;64: Zimmerman M, Lish JD, Farber NJ, Hartung J, Lush D, Kuzme MA, et al. Screening for depression in medical patients. Is the focus too narrow? Gen Hosp Psychiatry 1994;16: Hays RD, Wells KB, Sherbourne CD, Rogers W, Spritzer K. Functioning and well-being outcomes of patients with depression compared with chronic general medical illnesses. Arch Gen Psychiatry 1995;5: Hancock KM, Craig AR, Dickson HG, Chang E, Martin J. Anxiety and depression over the first year of spinal cord injury: a longitudinal study. Paraplegia 1993;31: Trieschmann RB. Spinal cord injuries: psychological, social and vocational rehabilitation. 2nd ed. New York: Demos Publications; Kennedy P, Lowe R, Grey N, Short E. Traumatic spinal cord injury and psychological impact: a cross sectional analysis of coping styles. Br J Clin Psychol 1995;34: Craig A, Hancock K, Dickson H. A longitudinal investigation into anxiety and depression in the first two years following spinal cord injury. Paraplegia 1994;32: Richards JS. Psychologic adjustment to spinal cord injury during first year post discharge. Arch Phys Med Rehabil 1986;67: Frankel H, Hancock D, Hyslop G. The value of postural reduction in the initial management of closed injuries of the spine with tetraplegia. Paraplegia 1969;7: Hamilton B, Granger C. Guide for the use of the uniform data set for medical rehabilitation. Buffalo (NY): Research Foundation of State University of New York; Stineman MG, Shea JA, Jette A, Tassoni CJ, Ottenbacher KJ, Fielder R, et al. The functional independence measure: tests of

6 ANXIETY AND DEPRESSION AFTER SCI, Kennedy 937 scaling assumptions, structure, and reliability across 20 diverse impairment categories. Arch Phys Med Rehabil 1996;77: Beck AT, Steer ARA. Beck Depression Inventory manual. San Antonio (TX): Psychological Corp; Spielberger C, Gorsuch R, Lushene R, Vagg P, Jacobs G. Manual for the State Trait Anxiety Inventory (Form Y). Palo Alto (CA): Consulting Psychologist Press; Crewe NM, Krause JS. Spinal cord injury; psychological aspects. In: Kaplan B, editor. Rehabilitation psychology. Baltimore: Aspen; Jacob K, Zachariah K, Bhattacharji S. Depression in spinal cord injury: methodological issues. Paraplegia 1995;33: Judd F, Brown D, Burrows G. Depression, disease and disability: application to patients with traumatic spinal cord injury. Paraplegia 1991;29: Sarason I, Sarason B, Shearing E, Pierce G. A brief measure of social support: practical and theoretical implications. J Social Personal Relationships 1987;4: Sarason IG, Sarason BR. Experimentally provided social support. J Personality Social Support 1986;50:

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