Mild Impairment of Cognition Impacts on Activity Participation After Stroke in a Community-Dwelling Australian Cohort Jacinta Spitzer, Tamara Tse, Carolyn M. Baum, Leeanne M. Carey key words: occupation, cognition, engagement ABSTRACT Ongoing disability following stroke can severely impact activity participation and quality of life. The authors investigated the association between cognition and mood and activity participation in 30 survivors of stroke living in the community, using quantitative assessment tools. Non-parametric correlation analyses quantified the presence and strength of association between variables. Differences for those with cognitive impairment or with depressive symptoms were investigated. Survivors of stroke with cognitive impairment of even mild severity had significantly reduced participation in all activity domains. Significant differences in activity participation were not found with mood, although relatively few were identified as being depressed. The findings suggest that mild cognitive impairment after stroke is associated with participation limitations that are important for occupational therapists to consider when planning intervention.
A
primary focus of occupational therapy is participation in occupations that are meaningful and purposeful to the individual (Law, Baum, & Baptiste, 2002). Kielhofner (2002) defined participation as “engagement in work, play, or activities of daily living that are part of one’s socio-cultural context and that are desired and/or necessary to one’s well-being” (p. 115). Despite the emphasis on participation in occupational therapy literature, it has been highlighted that stroke rehabilitation services rarely focus on participation beyond meaningful self-care occupations (Cott, Wiles, & Devitt, 2007). Cott et al. described the transition from inpatient stroke rehabilitation to community living as
difficult for survivors of stroke. Further, Desrosiers et al. (2006) found that a lack of focus on return to community participation in stroke rehabilitation negatively impacted an individual’s level of engagement in the long-term. The World Health Organization (2001) highlights the importance of outcomes related to participation, yet only a limited number of studies have investigated the relationship between activity participation, functional outcome, and quality of life. Edwards, Hahn, Baum, and Dromerick (2006) explored life satisfaction and engagement in meaningful occupations following mild stroke in 219 participants living in the community 6 months after stroke. They found that
Jacinta Spitzer, BOT (Hons), was an Occupational Therapy student, School of Occupational Therapy, La Trobe University, Victoria, Australia. Tamara Tse, BOT, PGDipGer, MGer, is Research Therapist, National Stroke Research Institute, Florey Neuroscience Institutes, and Tutor, School of Occupational Therapy, LaTrobe University, Victoria, Australia. Carolyn M. Baum, PhD, OTR/L, FAOTA, is Professor, Occupational Therapy and Neurology, and Elias Michael Director, Program in Occupational Therapy, Washington University School of Medicine, St. Louis, Missouri. Leeanne M. Carey, BAppSci(OT), PhD, is Division Head and ARC Future Fellow, Division of Neurorehabilitation and Recovery, National Stroke Research Institute, Florey Neuroscience Institutes, and Adjunct Professor, School of Occupational Therapy, LaTrobe University, Victoria, Australia. Originally submitted December 23, 2009. Accepted for publication April 8, 2010. The authors have no financial or proprietary interest in the materials presented herein. Address correspondence to Leeanne Carey at [email protected]. doi: 10.3928/15394492-20101108-03
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reduced participation in meaningful occupations was associated with lowered life satisfaction despite independence in activities of daily living. Depression and stroke-related impairment (including altered cognition) were identified as other significant predictors of lowered life satisfaction following mild stroke. Further, depression has been identified as a major contributing factor to the reduction in activity participation among survivors of stroke in Australia in qualitative analyses (George, Wilcock, & Stanley, 2001; White, MacKenzie, Magin, & Pollack, 2008). In an Israeli population living in the community, it was found that stroke survivors (n = 56) had given up on average 57.8% of pre-morbid activities due to stroke (Hartman-Maeir, Soroker, Ring, Avni, & Katz, 2007). The authors highlighted that activity participation was more strongly associated with life satisfaction than functional independence in basic activities of daily living. Participation in high-demand leisure activities, including recreational activities and driving (Rochette, Desrosiers, Bravo, St.-Cyr/Tribble, & Bourget, 2007), were the most frequently diminished even in those with only mild stroke (Edwards et al., 2006; Hartman-Maeir et al., 2007). Knowledge of participation outcomes following stroke is important because activity participation is a modifiable factor affecting stroke survivors’ health-related quality of life (Kwok et al., 2006). Although current literature emphasizes the importance of activity participation following stroke and the use of participation measures (Edwards et al., 2006; Hartman-Maeir et al., 2007), to date quantitative measures of participation following stroke are rarely used. The Activity Card Sort (ACS) (Baum, 1995) is a quantitative measure of participation that has recently been modified and validated for use in the Australian population aged 60 to 95 years (ACS-Aus) (Doney & Packer, 2008; Packer, Boshoff, & DeJonge, 2007). The potential now exists to use this quantitative measure of participation to explore and quantify activity participation outcomes in an Australian cohort. In particular, the potential impact of mood and cognition on retention of participation in activities after stroke is indicated. Depression is frequently experienced by survivors of stroke (34% versus 13% in the general population) (Lindén, Blomstrand, & Skoog, 2007), has a negative impact on quality of life (Edwards et al., 2006; Kwok et al., 2006), and is reported to have a negative impact on activity participation in a qualitative analysis (White et al., 2008). Similarly, impaired cognition is common after stroke, is often associated with depression (Hackett & Anderson, 2005), has a negative impact on work and social
functioning in a sample with mild to moderate impairment (Hommel, et al., 2009), and is a significant factor in quality of life following mild stroke (Edwards et al., 2006). In particular, an impact on social/educational (Hommel et al., 2009) and highdemand leisure is likely (Edwards et al., 2006; Hartman-Maeir et al., 2007; Rochette et al., 2007), even in those with mild impairment. The aim of this study was to investigate the relationship of activity participation to cognition and mood in people who have had a stroke and live in the community. Participation in household, social/educational, high-demand, and lowdemand leisure activities was quantified using the ACS-Aus. It was hypothesized that (1) survivors of stroke with mild cognitive impairment will have lower levels of retained participation in social/educational and high-demand leisure activities and (2) survivors of stroke with depressive symptoms (at or above criterion on the Center for Epidemiological Studies Depression Scale [CES-D]) will have lower levels of engagement across all participation domains.
Methods
Study Design A cross-sectional design was used, with the evaluation of survivors of stroke being performed at a single point in time in the chronic phase. Relationships between variables were investigated using a quantitative, exploratory approach and correlation method (Portney & Watkins, 2000). Participants A convenience sample of 30 survivors of stroke, living in the community of metropolitan Melbourne, within the Australian population was planned. A relatively even number of men and women were approached. To meet the selection criteria for recruitment to the study, participants were required to have a history of stroke, be medically stable, be at least 6 months poststroke in the post-rehabilitation phase, and be living in the community. The participants were required to communicate in English, comprehend two to three stage commands, and sustain attention adequate for testing on outcome measures. Sustained attention was assessed using the star cancellation test (Weintraub & Mesulam, 1987) and the therapists’ clinical judgment. Background Information Background information on neurological status, sensorimotor function (particularly in the upper
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limb), quality of life, and reintegration to normal living was obtained using valid and reliable measures, as outlined below. The National Institute of Health Stroke Scale (NIHSS) was used to examine the severity of neurological impairment (Brott et al., 1989). The Fugl-Meyer Assessment (Fugl-Meyer, Jääskö, Leyman, Olsson, & Steglind, 1975) of the upper extremity was used to determine upper limb motor impairment of the hemiplegic side. The Action Research Arm Test (Lyle, 1981) was employed to assess upper limb function. The Tactile Discrimination Test (Carey, Oke, & Matyas, 1997) assessed tactile discrimination, using a recently developed short version (Carey et al., 2009). The Wrist Position Sense Test (Carey, Oke & Matyas, 1996) was used as a measure of limb position sensation. The Stroke Impact Scale Version 3, a commonly used measure, assessed nine domains of quality of life, including subjective evaluation of recovery (Duncan, Bode, Min Lai, & Perera, 2003). The Reintegration to Normal Living Index (Wood-Dauphinee, Opzoomer, Williams, Marchand, & Spitzer, 1988) measured ability to resume normal life following development of impairments, based on a questionnaire. Outcome Measures Participation Measure. The ACS-Aus (Packer et al., 2007), based on the original ACS (Baum, 1995), is an interview-based assessment comprising 82 pictorial cards of activities identified as being regularly participated in by older Australians. The pictorial cards are categorized into subgroups of leisure activities, social/educational activities, and household activities. The ACS-Aus has been validated for use as a measure of participation in the older adult population of Australia (Doney & Packer, 2008). The ACS-Aus consists of three different administrative versions, including a recovering version to measure change in activity participation following onset of illness/injury. The recovering version was used in this study as the most appropriate to measure activity participation after stroke. Each activity card is placed in one of five categories as follows: “not done prior to the illness/injury”; “continued to do during the illness/injury”; “given up due to the illness/injury”; “beginning to do again”; and “new activity since the illness/injury.” Cards are sorted into the category that best describes the individual’s involvement in the activity from his or her perspective. Previous activity level, current activity level, percentage of retained activity, and percentage of lost activity are then calculated to determine activity participation following illness or injury.
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In this study, hypotheses and analyses focused on percentages of retained activity participation following stroke in each participation domain. The Australian version of the ACS does not distinguish between high- and low-demand leisure. To address our hypotheses, we categorized leisure activities into high and low demand, with reference to the original version (Baum, 1995) in which they were assessed separately. Cognitive Performance Capacity Measure. The Montreal Cognitive Assessment (MoCA) (Nasreddine et al., 2005) assessed mild cognitive impairment, with a focus on identifying mild impairment in cognition. The MoCA was originally developed as a screening tool for people presenting with mild cognitive impairment who performed within the normal range on the Mini-Mental State Examination (MMSE) (Folstein, Folstein, & McHugh, 1975). The MoCA is a 30-point performance test providing a global assessment of eight domains of cognition. Cognitive domains of short-term memory, working memory, visuospatial ability, executive function, attention, concentration, language, and orientation are assessed. This assessment has been validated as a screening tool to assess mild cognitive impairment (Nasreddine et al., 2005). The MoCA has established a high sensitivity rating for mild cognitive impairment (90%) compared with the MMSE (18%). High specificity is evident in both the MoCA (87%) and MMSE (100%). Test–retest reliability of the MoCA has also been established with a correlation coefficient of .92 (p < .001) (Nasreddine et al., 2005). A score of less than 26 of 30 is reported to indicate mild cognitive impairment (Nasreddine et al., 2005). Depression Measure. The CES-D, a widely used and validated measure of depressive symptoms (Shinar et al., 1986), was used as a standardized measure of depressive symptoms. A maximum score of 60 is possible, with a score of 16 or above indicating evidence of depression (Radloff, 1977). Procedures Ethics approval was granted and all procedures were in compliance with procedures approved by the hospital and university human ethics committees. A convenience sample of survivors of stroke who had previously participated in stroke studies at a clinical research center and had indicated interest in future studies were approached for recruitment. Participants were assessed on the outcome measures across one or two sessions with rest breaks, dependent on the participants’ ability to sustain concentration. All except one participant were tested
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Table 1
Descriptive Statistics for Retained Participation in Activities Post-Stroke Using the Activity Card Sort (ACS) Percentiles (Median) ACS Retained Participation Categories (%)a
Mean
SD
Minimum
Maximum
25th
50th
High-demand leisure
68.82
23.18
27.78
100.00
53.41
65.84
93.40
Low-demand leisure
86.53
14.47
54.76
100.00
74.31
91.89
100.00
Social/educational
90.48
12.57
50.00
100.00
85.38
94.68
100.00
Household
77.12
27.71
0.00
100.00
59.58
88.20
100.00
Total
83.11
13.43
48.98
100.00
71.01
83.84
95.50
75th
SD = standard deviation. a Scores are recorded as percentage of retained activity participation within categories, as outlined in the ACS.
in a single session. To ensure consistency with data collection, the two researchers conducted testing collaboratively and were delegated specific assessments to conduct with each participant in a consistent order. Where both upper limbs were tested, the unaffected hand was tested first. Measures presented were counterbalanced between performance capacity, quality of life, mood, and participation to minimize bias in the testing sequence (Portney & Watkins, 2000). Data Analysis Descriptive statistics were used to characterize the performance of the group and relationships between measures were investigated using Spearman rank correlation coefficients (rs). The strength of the relationships were analyzed relative to predictions and hypotheses. Differences in participation outcomes in subgroups with and without depressive symptoms and with and without mild cognitive impairment were tested using the non-parametric Mann–Whitney U test and box plots were used to visually represent the differences in participation in the outlined subgroups (Portney & Watkins, 2000). Data were entered into and analyzed using Microsoft Office Excel 2003 (Microsoft Corporation, Redmond, WA) and Statistical Package for Social Sciences (SPSS) Version 17.0 (SPSS, Inc., Chicago, IL).
Results Thirty participants were recruited, comprising 19 men (63% of the sample) and 11 women (37%) with a mean age of 59 years (standard deviation = 14.91 years; range: 20 to 81 years). For 27 participants (90%), it was their first stroke. Time elapsed since most recent stroke ranged from 27 to 165 months with a mean of 58 months (standard deviation = 30.93 months).
Participant Performance on Outcomes Activity Participation. The median scores varied slightly between participation categories with the exception that fewer retained participation in highdemand leisure activities (Table 1). Descriptives of participant performance on the cognitive capacity and depression measures and background clinical data are shown in Table 2. Cognitive Performance Capacity. Twenty-four participants (80%) had mild cognitive impairment, defined as a score of less than 26 on the MoCA (Nasreddine et al., 2005). Fourteen participants (47%) scored between 23 and 25, suggesting only mild impairment. Six participants (20%) had scores ranging from 19 to 22, also consistent with mild cognitive impairment, and four participants (13%) had scores below 19, suggestive of more severe impairment (http://www.mocatest.org/validation_study. html). Six participants (20%) were cognitively intact with a score of 26 or greater on the MoCA. Mood. Only seven participants (23%) had depressive symptoms, indicated as a score of 16 or above on the CES-D (Radloff, 1977); however, there was some variation. Levels of Participation in Social/Educational and High-Demand Leisure Activities and Mild Cognitive Impairment Lower levels of participation in high-demand leisure activities, social/educational activities, and overall participation were found in those with mild cognitive impairment (as indicated by a score of less than 26 on the MoCA). Those with mild cognitive impairment had significantly lower levels of participation in not only total participation (U = 7.00; p = .001), high-demand leisure activities (U = 12.00; p = .002), and social/educational activities (U = 25.50; p = .013), but in all participation domains, including low-demand leisure activities (U = 21.00; p = .007)
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Table 2
Descriptive Statistics of Participant Performance on Measures of Cognitive Capacity and Depression and on Background Clinical Data Percentiles (Median) Outcome Measure
Mean
SD
Scale Range
Minimum
Maximum
25th
50th
75th
MoCA
22.67
4.26
0–30
9
28
21.00
23.00
25.00
CES-D
9.00
7.88
0–60
0
35
2.75
7.50
15.25
NIHSS
4.50
3.57
0–42
0
14
2.00
4.00
5.25
FMA
45.93
17.62
0–62
2
62
46.50
52.00
57.25
ARAT (affected)
41.83
19.74
0–57
0
57
37.25
50.00
56.25
TDT (%) (affected)
32.90
34.59
-50–100
-49.70
89.16
11.21
33.41
58.70
WPST (0) (affected)
13.48
6.41
3–45
6.05
31.55
8.05
11.88
16.39
SIS (%)
69.90
21.11
0–100
0.00
100.00
58.75
72.50
85.00
RNL
47.10
6.71
0–55
25
55
43.75
48.50
53.00
Note. SD = standard deviation. MoCA = Montreal Cognitive Assessment. A score of 25 or less is defined as mild cognitive impairment (Nasreddine et al., 2005). CES-D = Center for Epidemiological Studies Depression Scale. A score of 16 or above indicates evidence of depression (Radloff, 1977). NIHSS = National Institute of Health Stroke Scale. Scores of 5 or less = mild impairment, 6 to 14 = moderate impairment, and 15 or more = severe impairment. FMA = Fugl-Meyer Assessment. ARAT = Action Research Arm Test, 0 = no movement, 57 = normal movement. TDT = Tactile Discrimination Test. Score is the percentage of total possible area under the curve (AuC) of correct response after accounting for chance. Scores less than 64.78% AuC indicate impairment (Carey et al., 2009); WPST = Wrist Position Sense Test. Score represents degrees of average error in identifying wrist position in space. Scores greater than 11 degrees of average error indicate impairment (Carey et al., 1996). SIS = Stroke Impact Scale–Level of Recovery domain. A higher score indicates better recovery. RNL = Reintegration to Normal Living. A higher score indicates better reintegration.
Figure. Distribution of percentages of retained participation in high-demand, low-demand, and overall leisure activities, social/educational and household activities, and overall participation post-stroke for those with intact cognitive function compared to those with mild cognitive impairment. A score of 25 or less on the Montreal Cognitive Assessment = mild cognitive impairment (Nasreddine et al., 2005).
and household activities (U = 25.50; p = .015), when compared to those without cognitive impairment following stroke. The figure shows the distribution
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of percentages of retained participation in all activity domains for those with and without mild cognitive impairment.
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Levels of Participation in Activities and Depression There were negative relationships between all domains of participation and depressive symptoms following stroke, but none of these relationships were significant at the .05 level. Total percentage of retained participation and CES-D total score indicated no significant relationship (rs = .046; p = .810). Those with depressive symptoms (as indicated by a score of 16 or above on the CES-D) compared to those without depressive symptoms (indicated by a score of 15 or below) did not show significant differences in relation to percentage of total retained participation (U = 62.00, p = .364) or any other activity domain.
Discussion
Activity Participation Following Stroke A major finding of this study identified that reduced participation in at least one or more household, social/educational, or leisure activity following stroke is common, occurring in 29 participants (97%). This is consistent with previous studies using the ACS as a measure of activity participation (Edward et al., 2006; Hartman-Maeir et al., 2007; Katz, Karpin, Lak, Furman, & Hartman-Maeir, 2003). Reduced participation in more complex activities that require higher demands on cognitive, sensory, and motor capacities (such as high-demand leisure activities) have been reported following stroke (McKenna, Liddle, Brown, Lee, & Gustafsson, 2009). Participation in high-demand leisure activities was most frequently reduced in the current study and had the greatest percentage loss of activities. These findings extend the previous Australian findings through the use of a quantitative index of activity participation. Reduced participation in social/educational activities was also found and may be attributed to most of these activities occurring outside the home (e.g., visiting with friends). Due to reduced performance capacity in many survivors of stroke and higher demands on performance within the community-based environment (Kielhofner, 2002), community-based activities may be beyond their capacity, resulting in a loss in participation. Relationship Between Activity Participation and Cognitive Capacity Mild impairment in cognition has been previously identified as negatively impacting activity participation and an important factor in quality of life following mild stroke (Edwards et al., 2006). In the current study, a majority of participants (n = 24, 80%) were
found to have mild cognitive impairment, defined as scores less than 26 on the MoCA. However, it is important to realize that scores in the lower end of the scale may be indicative of more than just mild impairment. Similar to the study by Edwards et al., the cohort were, on average, considered to have had a mild stroke (mean NIHSS = 4.50). Our study found that those with even relatively mild impairment in cognition had significantly lower levels of participation in social/educational and high-demand leisure activities compared to those with no cognitive loss, as hypothesized. High-demand leisure and social/ educational activities are more complex activities to perform (e.g., require multiple cognitive functions such as problem solving and sequencing) (Edwards et al., 2006). Therefore, participation in these activities may expect to be lost with a reduced cognitive capacity following stroke, despite mild neurological impairment. However, a significant difference was also found for all other activity participation domains, suggesting that mild cognitive impairment has a broader impact on participation than highdemand leisure and social/educational activities alone. Activity Participation and Depression Depression following stroke has previously been reported as common with 34% reportedly experiencing depression (Lindén et al., 2007). In the current study, only a small number of the stroke sample were identified to experience depressive symptoms (n = 7, 23%). This is substantially lower when compared with studies conducted by Hartman-Maeir et al. (2006) in which 31% of a sample of 56 stroke survivors were identified as having probable depression. Likewise, Altindag, Soran, Demirkol, and Ozkul (2008) found that 39 of 40 stroke survivors in their study sample had mild to severe depression. Previous qualitative studies have identified post-stroke depression as having a significant impact on reduced activity participation levels following stroke (George et al., 2001; White et al., 2008). The current study did not find a significant difference in activity participation between those with and without depressive symptoms. However, a small convenience sample of stroke survivors with depressive symptoms in the current study may have reduced the ability to detect this phenomenon. Further, we were not able to define whether individuals had clinical depression or major depressive disorder. As has been identified in previous studies, having a larger sample of stroke survivors with depressive symptoms and more substantial depressive symptoms may have produced different results.
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Limitations A limitation of this study was the relatively small sample of 30 participants investigated. Further, generalization of results is limited with the sample primarily derived from metropolitan Melbourne with a lack of cultural diversity. Similar to Edwards et al. (2006), 77% of the sample was considered to have had a mild stroke. Further investigation of people with a wider range of neurological impairment following stroke is needed. The ability to detect an association may also be influenced by scores not being well distributed across the full scale range. It is noted that approximately 25% of the sample had the maximum 100% score for low-demand leisure, social/educational, and household domains, potentially reducing the ability to detect an association in these domains. In addition, a relatively small number of participants were identified as having depressive symptoms in the sample. The criterion used to detect presence of depressive symptoms (using the CES-D) and the selection process conducted in this study may have affected the number of participants with depressive symptoms recruited. A substantial number of participants reported depressive symptoms within the first 6 months following stroke; however, at the time of this study, an average of 58 months had elapsed since time of stroke. Finally, the ACS-Aus was developed for use with Australians 65 years and older (Packer et al., 2007) and some items were not relevant to all participants (especially those younger than 55 years). Further, the current ACS-Aus does not address work and study participation, commonly restricted following stroke, and was reported to be reduced by younger participants in this study. Implications for Practice This study found that reduced cognition has a negative association with participation in all activity domains, including high- and low-demand leisure, social/educational, and household activities following stroke. This was evident in a sample with primarily mild impairment in cognition and mild neurological impairment. Based on these findings, occupational therapy in stroke rehabilitation should ideally focus on return to participation in the full range of life activities, even in people who have relatively mild impairment in cognition after stroke. The benefits of using a quantitative measure of activity participation following stroke (the ACS) to accurately identify particular activities that an individual finds difficult to perform or has given up as a result of residual impairments related to stroke has been highlighted in this study.
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Conclusion Loss of activity participation following stroke is significantly associated with cognitive capacity. Cognitive loss following stroke has a negative association with participation in a wide range of activities: high-demand leisure, low-demand leisure, social/educational, and household. Despite previous findings identifying a significant relationship between depressive symptoms and activity participation, our ability to investigate this was limited. Further investigation of the relationship between depressive symptoms and participation following stroke in a larger cohort of Australian survivors of stroke is needed. Finally, development of the ACSAus to include activities for a wider age range of the adult Australian population, particularly work and study participation, would be of value because these are commonly reduced with onset of stroke. Acknowledgments
The authors thank the participants for their time and interest in participating in this study. They also thank Professor Tanya Packer, author of the ACS-Aus, Professor, School of Occupational Therapy, Dalhousie University, and Adjunct Professor, Curtin Health Innovation Research Institute, Curtin University for a pre-publication research version of the tool for use in this study. This project was supported by an Australian National Stroke Foundation Honours grant awarded to the first author (JS); a National Health and Medical Research Council Career Development Award and Australian Research Council Future Fellowship awarded to the senior author (LC); and the Victorian Government’s Operational Infrastructure Support Program.
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Fugl-Meyer, A. R., Jääskö, L., Leyman, I., Olsson, S., & Steglind, S. (1975). The post-stroke hemiplegic patient: A method for evaluation of physical performance. Scandinavian Journal of Rehabilitation Medicine, 7(1), 13-31. George, S., Wilcock, A., & Stanley, M. (2001). Depression and lability: The effects on occupation following stroke. British Journal of Occupational Therapy, 64, 455-461. Hackett, M. L., & Anderson, C. S. (2005). Predictors of depression after stroke: A systematic review of observational studies. Stroke, 36, 2296-2301. Hartman-Maeir, A., Soroker, N., Ring, H., Avni, N., & Katz, N. (2007). Activities, participation and satisfaction one-year post stroke. Disability & Rehabilitation, 29, 559-566. Hommel, M., Trabucco-Miguel, S., Joray, S., Naegele, B., Gonnet, N., & Jaillard, A. (2009). Social dysfunctioning after mild to moderate first-ever stroke at vocational age. Journal of Neurology, Neurosurgery & Psychiatry, 80, 371-375. Katz, N., Karpin, H., Lak, A., Furman, T., & Hartman-Maeir, A. (2003). Participation in occupational performance: Reliability and validity of the Activity Card Sort. OTJR: Occupation, Participation & Health, 23, 10-17. Kielhofner, G. (2002). Model of human occupation: Theory and application (3rd ed.). Baltimore: Lippincott, Williams & Wilkins. Kwok, T., Lo, R. S., Wong, E., Wai-Kwong, T., Mok, V., & KaiSing, W. (2006). Quality of life of stroke survivors: A 1-year follow-up study. Archives of Physical Medicine & Rehabilitation, 87, 1177-1182.
Portney, L. G., & Watkins, M. P. (2000). Foundations of clinical research: Applications to practice (2nd ed.). Upper Saddle River, NJ: Prentice Hall, Health. Radloff, L. S. (1977). The CES-D Scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401. Rochette, A., Desrosiers, J., Bravo, G., St.-Cyr/Tribble, D., & Bourget, A. (2007). Changes in participation after a mild stroke: Quantitative and qualitative perspectives. Topics in Stroke Rehabilitation, 14(3), 59-68. Shinar, D., Gross, C. R., Price, T. R., Banko, M., Bolduc, P. L., & Robinson, R. G. (1986). Screening for depression in stroke patients: The reliability and validity of the Centre for Epidemiologic Studies Depression Scale. Stroke, 17, 241-245. Weintraub, S., & Mesulam, M. M. (1987). Right cerebral dominance in spatial attention: Further evidence based on ipsilateral neglect. Archives of Neurology, 44, 621-625. White, J. H., MacKenzie, L., Magin, P., & Pollack, M. R. P. (2008). The occupational experience of stroke survivors in a community setting. OTJR: Occupation, Participation & Health, 28, 160-167. Wood-Dauphinee, S. L., Opzoomer, M. A., Williams, J. I., Marchand, B., & Spitzer, W. O. (1988). Assessment of global function: The Reintegration to Normal Living Index. Archives of Physical Medicine & Rehabilitation, 69, 583-590. World Health Organization. (2001). International Classification of Functioning, Disability & Health: ICF. Geneva: Author.
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A
primary focus of occupational therapy is participation in occupations that are meaningful and purposeful to the individual (Law, Baum, & Baptiste, 2002). Kielhofner (2002) defined participation as “engagement in work, play, or activities of daily living that are part of one’s socio-cultural context and that are desired and/or necessary to one’s well-being” (p. 115). Despite the emphasis on participation in occupational therapy literature, it has been highlighted that stroke rehabilitation services rarely focus on participation beyond meaningful self-care occupations (Cott, Wiles, & Devitt, 2007). Cott et al. described the transition from inpatient stroke rehabilitation to community living as
difficult for survivors of stroke. Further, Desrosiers et al. (2006) found that a lack of focus on return to community participation in stroke rehabilitation negatively impacted an individual’s level of engagement in the long-term. The World Health Organization (2001) highlights the importance of outcomes related to participation, yet only a limited number of studies have investigated the relationship between activity participation, functional outcome, and quality of life. Edwards, Hahn, Baum, and Dromerick (2006) explored life satisfaction and engagement in meaningful occupations following mild stroke in 219 participants living in the community 6 months after stroke. They found that
Jacinta Spitzer, BOT (Hons), was an Occupational Therapy student, School of Occupational Therapy, La Trobe University, Victoria, Australia. Tamara Tse, BOT, PGDipGer, MGer, is Research Therapist, National Stroke Research Institute, Florey Neuroscience Institutes, and Tutor, School of Occupational Therapy, LaTrobe University, Victoria, Australia. Carolyn M. Baum, PhD, OTR/L, FAOTA, is Professor, Occupational Therapy and Neurology, and Elias Michael Director, Program in Occupational Therapy, Washington University School of Medicine, St. Louis, Missouri. Leeanne M. Carey, BAppSci(OT), PhD, is Division Head and ARC Future Fellow, Division of Neurorehabilitation and Recovery, National Stroke Research Institute, Florey Neuroscience Institutes, and Adjunct Professor, School of Occupational Therapy, LaTrobe University, Victoria, Australia. Originally submitted December 23, 2009. Accepted for publication April 8, 2010. The authors have no financial or proprietary interest in the materials presented herein. Address correspondence to Leeanne Carey at [email protected]. doi: 10.3928/15394492-20101108-03
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reduced participation in meaningful occupations was associated with lowered life satisfaction despite independence in activities of daily living. Depression and stroke-related impairment (including altered cognition) were identified as other significant predictors of lowered life satisfaction following mild stroke. Further, depression has been identified as a major contributing factor to the reduction in activity participation among survivors of stroke in Australia in qualitative analyses (George, Wilcock, & Stanley, 2001; White, MacKenzie, Magin, & Pollack, 2008). In an Israeli population living in the community, it was found that stroke survivors (n = 56) had given up on average 57.8% of pre-morbid activities due to stroke (Hartman-Maeir, Soroker, Ring, Avni, & Katz, 2007). The authors highlighted that activity participation was more strongly associated with life satisfaction than functional independence in basic activities of daily living. Participation in high-demand leisure activities, including recreational activities and driving (Rochette, Desrosiers, Bravo, St.-Cyr/Tribble, & Bourget, 2007), were the most frequently diminished even in those with only mild stroke (Edwards et al., 2006; Hartman-Maeir et al., 2007). Knowledge of participation outcomes following stroke is important because activity participation is a modifiable factor affecting stroke survivors’ health-related quality of life (Kwok et al., 2006). Although current literature emphasizes the importance of activity participation following stroke and the use of participation measures (Edwards et al., 2006; Hartman-Maeir et al., 2007), to date quantitative measures of participation following stroke are rarely used. The Activity Card Sort (ACS) (Baum, 1995) is a quantitative measure of participation that has recently been modified and validated for use in the Australian population aged 60 to 95 years (ACS-Aus) (Doney & Packer, 2008; Packer, Boshoff, & DeJonge, 2007). The potential now exists to use this quantitative measure of participation to explore and quantify activity participation outcomes in an Australian cohort. In particular, the potential impact of mood and cognition on retention of participation in activities after stroke is indicated. Depression is frequently experienced by survivors of stroke (34% versus 13% in the general population) (Lindén, Blomstrand, & Skoog, 2007), has a negative impact on quality of life (Edwards et al., 2006; Kwok et al., 2006), and is reported to have a negative impact on activity participation in a qualitative analysis (White et al., 2008). Similarly, impaired cognition is common after stroke, is often associated with depression (Hackett & Anderson, 2005), has a negative impact on work and social
functioning in a sample with mild to moderate impairment (Hommel, et al., 2009), and is a significant factor in quality of life following mild stroke (Edwards et al., 2006). In particular, an impact on social/educational (Hommel et al., 2009) and highdemand leisure is likely (Edwards et al., 2006; Hartman-Maeir et al., 2007; Rochette et al., 2007), even in those with mild impairment. The aim of this study was to investigate the relationship of activity participation to cognition and mood in people who have had a stroke and live in the community. Participation in household, social/educational, high-demand, and lowdemand leisure activities was quantified using the ACS-Aus. It was hypothesized that (1) survivors of stroke with mild cognitive impairment will have lower levels of retained participation in social/educational and high-demand leisure activities and (2) survivors of stroke with depressive symptoms (at or above criterion on the Center for Epidemiological Studies Depression Scale [CES-D]) will have lower levels of engagement across all participation domains.
Methods
Study Design A cross-sectional design was used, with the evaluation of survivors of stroke being performed at a single point in time in the chronic phase. Relationships between variables were investigated using a quantitative, exploratory approach and correlation method (Portney & Watkins, 2000). Participants A convenience sample of 30 survivors of stroke, living in the community of metropolitan Melbourne, within the Australian population was planned. A relatively even number of men and women were approached. To meet the selection criteria for recruitment to the study, participants were required to have a history of stroke, be medically stable, be at least 6 months poststroke in the post-rehabilitation phase, and be living in the community. The participants were required to communicate in English, comprehend two to three stage commands, and sustain attention adequate for testing on outcome measures. Sustained attention was assessed using the star cancellation test (Weintraub & Mesulam, 1987) and the therapists’ clinical judgment. Background Information Background information on neurological status, sensorimotor function (particularly in the upper
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limb), quality of life, and reintegration to normal living was obtained using valid and reliable measures, as outlined below. The National Institute of Health Stroke Scale (NIHSS) was used to examine the severity of neurological impairment (Brott et al., 1989). The Fugl-Meyer Assessment (Fugl-Meyer, Jääskö, Leyman, Olsson, & Steglind, 1975) of the upper extremity was used to determine upper limb motor impairment of the hemiplegic side. The Action Research Arm Test (Lyle, 1981) was employed to assess upper limb function. The Tactile Discrimination Test (Carey, Oke, & Matyas, 1997) assessed tactile discrimination, using a recently developed short version (Carey et al., 2009). The Wrist Position Sense Test (Carey, Oke & Matyas, 1996) was used as a measure of limb position sensation. The Stroke Impact Scale Version 3, a commonly used measure, assessed nine domains of quality of life, including subjective evaluation of recovery (Duncan, Bode, Min Lai, & Perera, 2003). The Reintegration to Normal Living Index (Wood-Dauphinee, Opzoomer, Williams, Marchand, & Spitzer, 1988) measured ability to resume normal life following development of impairments, based on a questionnaire. Outcome Measures Participation Measure. The ACS-Aus (Packer et al., 2007), based on the original ACS (Baum, 1995), is an interview-based assessment comprising 82 pictorial cards of activities identified as being regularly participated in by older Australians. The pictorial cards are categorized into subgroups of leisure activities, social/educational activities, and household activities. The ACS-Aus has been validated for use as a measure of participation in the older adult population of Australia (Doney & Packer, 2008). The ACS-Aus consists of three different administrative versions, including a recovering version to measure change in activity participation following onset of illness/injury. The recovering version was used in this study as the most appropriate to measure activity participation after stroke. Each activity card is placed in one of five categories as follows: “not done prior to the illness/injury”; “continued to do during the illness/injury”; “given up due to the illness/injury”; “beginning to do again”; and “new activity since the illness/injury.” Cards are sorted into the category that best describes the individual’s involvement in the activity from his or her perspective. Previous activity level, current activity level, percentage of retained activity, and percentage of lost activity are then calculated to determine activity participation following illness or injury.
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In this study, hypotheses and analyses focused on percentages of retained activity participation following stroke in each participation domain. The Australian version of the ACS does not distinguish between high- and low-demand leisure. To address our hypotheses, we categorized leisure activities into high and low demand, with reference to the original version (Baum, 1995) in which they were assessed separately. Cognitive Performance Capacity Measure. The Montreal Cognitive Assessment (MoCA) (Nasreddine et al., 2005) assessed mild cognitive impairment, with a focus on identifying mild impairment in cognition. The MoCA was originally developed as a screening tool for people presenting with mild cognitive impairment who performed within the normal range on the Mini-Mental State Examination (MMSE) (Folstein, Folstein, & McHugh, 1975). The MoCA is a 30-point performance test providing a global assessment of eight domains of cognition. Cognitive domains of short-term memory, working memory, visuospatial ability, executive function, attention, concentration, language, and orientation are assessed. This assessment has been validated as a screening tool to assess mild cognitive impairment (Nasreddine et al., 2005). The MoCA has established a high sensitivity rating for mild cognitive impairment (90%) compared with the MMSE (18%). High specificity is evident in both the MoCA (87%) and MMSE (100%). Test–retest reliability of the MoCA has also been established with a correlation coefficient of .92 (p < .001) (Nasreddine et al., 2005). A score of less than 26 of 30 is reported to indicate mild cognitive impairment (Nasreddine et al., 2005). Depression Measure. The CES-D, a widely used and validated measure of depressive symptoms (Shinar et al., 1986), was used as a standardized measure of depressive symptoms. A maximum score of 60 is possible, with a score of 16 or above indicating evidence of depression (Radloff, 1977). Procedures Ethics approval was granted and all procedures were in compliance with procedures approved by the hospital and university human ethics committees. A convenience sample of survivors of stroke who had previously participated in stroke studies at a clinical research center and had indicated interest in future studies were approached for recruitment. Participants were assessed on the outcome measures across one or two sessions with rest breaks, dependent on the participants’ ability to sustain concentration. All except one participant were tested
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Table 1
Descriptive Statistics for Retained Participation in Activities Post-Stroke Using the Activity Card Sort (ACS) Percentiles (Median) ACS Retained Participation Categories (%)a
Mean
SD
Minimum
Maximum
25th
50th
High-demand leisure
68.82
23.18
27.78
100.00
53.41
65.84
93.40
Low-demand leisure
86.53
14.47
54.76
100.00
74.31
91.89
100.00
Social/educational
90.48
12.57
50.00
100.00
85.38
94.68
100.00
Household
77.12
27.71
0.00
100.00
59.58
88.20
100.00
Total
83.11
13.43
48.98
100.00
71.01
83.84
95.50
75th
SD = standard deviation. a Scores are recorded as percentage of retained activity participation within categories, as outlined in the ACS.
in a single session. To ensure consistency with data collection, the two researchers conducted testing collaboratively and were delegated specific assessments to conduct with each participant in a consistent order. Where both upper limbs were tested, the unaffected hand was tested first. Measures presented were counterbalanced between performance capacity, quality of life, mood, and participation to minimize bias in the testing sequence (Portney & Watkins, 2000). Data Analysis Descriptive statistics were used to characterize the performance of the group and relationships between measures were investigated using Spearman rank correlation coefficients (rs). The strength of the relationships were analyzed relative to predictions and hypotheses. Differences in participation outcomes in subgroups with and without depressive symptoms and with and without mild cognitive impairment were tested using the non-parametric Mann–Whitney U test and box plots were used to visually represent the differences in participation in the outlined subgroups (Portney & Watkins, 2000). Data were entered into and analyzed using Microsoft Office Excel 2003 (Microsoft Corporation, Redmond, WA) and Statistical Package for Social Sciences (SPSS) Version 17.0 (SPSS, Inc., Chicago, IL).
Results Thirty participants were recruited, comprising 19 men (63% of the sample) and 11 women (37%) with a mean age of 59 years (standard deviation = 14.91 years; range: 20 to 81 years). For 27 participants (90%), it was their first stroke. Time elapsed since most recent stroke ranged from 27 to 165 months with a mean of 58 months (standard deviation = 30.93 months).
Participant Performance on Outcomes Activity Participation. The median scores varied slightly between participation categories with the exception that fewer retained participation in highdemand leisure activities (Table 1). Descriptives of participant performance on the cognitive capacity and depression measures and background clinical data are shown in Table 2. Cognitive Performance Capacity. Twenty-four participants (80%) had mild cognitive impairment, defined as a score of less than 26 on the MoCA (Nasreddine et al., 2005). Fourteen participants (47%) scored between 23 and 25, suggesting only mild impairment. Six participants (20%) had scores ranging from 19 to 22, also consistent with mild cognitive impairment, and four participants (13%) had scores below 19, suggestive of more severe impairment (http://www.mocatest.org/validation_study. html). Six participants (20%) were cognitively intact with a score of 26 or greater on the MoCA. Mood. Only seven participants (23%) had depressive symptoms, indicated as a score of 16 or above on the CES-D (Radloff, 1977); however, there was some variation. Levels of Participation in Social/Educational and High-Demand Leisure Activities and Mild Cognitive Impairment Lower levels of participation in high-demand leisure activities, social/educational activities, and overall participation were found in those with mild cognitive impairment (as indicated by a score of less than 26 on the MoCA). Those with mild cognitive impairment had significantly lower levels of participation in not only total participation (U = 7.00; p = .001), high-demand leisure activities (U = 12.00; p = .002), and social/educational activities (U = 25.50; p = .013), but in all participation domains, including low-demand leisure activities (U = 21.00; p = .007)
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Table 2
Descriptive Statistics of Participant Performance on Measures of Cognitive Capacity and Depression and on Background Clinical Data Percentiles (Median) Outcome Measure
Mean
SD
Scale Range
Minimum
Maximum
25th
50th
75th
MoCA
22.67
4.26
0–30
9
28
21.00
23.00
25.00
CES-D
9.00
7.88
0–60
0
35
2.75
7.50
15.25
NIHSS
4.50
3.57
0–42
0
14
2.00
4.00
5.25
FMA
45.93
17.62
0–62
2
62
46.50
52.00
57.25
ARAT (affected)
41.83
19.74
0–57
0
57
37.25
50.00
56.25
TDT (%) (affected)
32.90
34.59
-50–100
-49.70
89.16
11.21
33.41
58.70
WPST (0) (affected)
13.48
6.41
3–45
6.05
31.55
8.05
11.88
16.39
SIS (%)
69.90
21.11
0–100
0.00
100.00
58.75
72.50
85.00
RNL
47.10
6.71
0–55
25
55
43.75
48.50
53.00
Note. SD = standard deviation. MoCA = Montreal Cognitive Assessment. A score of 25 or less is defined as mild cognitive impairment (Nasreddine et al., 2005). CES-D = Center for Epidemiological Studies Depression Scale. A score of 16 or above indicates evidence of depression (Radloff, 1977). NIHSS = National Institute of Health Stroke Scale. Scores of 5 or less = mild impairment, 6 to 14 = moderate impairment, and 15 or more = severe impairment. FMA = Fugl-Meyer Assessment. ARAT = Action Research Arm Test, 0 = no movement, 57 = normal movement. TDT = Tactile Discrimination Test. Score is the percentage of total possible area under the curve (AuC) of correct response after accounting for chance. Scores less than 64.78% AuC indicate impairment (Carey et al., 2009); WPST = Wrist Position Sense Test. Score represents degrees of average error in identifying wrist position in space. Scores greater than 11 degrees of average error indicate impairment (Carey et al., 1996). SIS = Stroke Impact Scale–Level of Recovery domain. A higher score indicates better recovery. RNL = Reintegration to Normal Living. A higher score indicates better reintegration.
Figure. Distribution of percentages of retained participation in high-demand, low-demand, and overall leisure activities, social/educational and household activities, and overall participation post-stroke for those with intact cognitive function compared to those with mild cognitive impairment. A score of 25 or less on the Montreal Cognitive Assessment = mild cognitive impairment (Nasreddine et al., 2005).
and household activities (U = 25.50; p = .015), when compared to those without cognitive impairment following stroke. The figure shows the distribution
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of percentages of retained participation in all activity domains for those with and without mild cognitive impairment.
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Levels of Participation in Activities and Depression There were negative relationships between all domains of participation and depressive symptoms following stroke, but none of these relationships were significant at the .05 level. Total percentage of retained participation and CES-D total score indicated no significant relationship (rs = .046; p = .810). Those with depressive symptoms (as indicated by a score of 16 or above on the CES-D) compared to those without depressive symptoms (indicated by a score of 15 or below) did not show significant differences in relation to percentage of total retained participation (U = 62.00, p = .364) or any other activity domain.
Discussion
Activity Participation Following Stroke A major finding of this study identified that reduced participation in at least one or more household, social/educational, or leisure activity following stroke is common, occurring in 29 participants (97%). This is consistent with previous studies using the ACS as a measure of activity participation (Edward et al., 2006; Hartman-Maeir et al., 2007; Katz, Karpin, Lak, Furman, & Hartman-Maeir, 2003). Reduced participation in more complex activities that require higher demands on cognitive, sensory, and motor capacities (such as high-demand leisure activities) have been reported following stroke (McKenna, Liddle, Brown, Lee, & Gustafsson, 2009). Participation in high-demand leisure activities was most frequently reduced in the current study and had the greatest percentage loss of activities. These findings extend the previous Australian findings through the use of a quantitative index of activity participation. Reduced participation in social/educational activities was also found and may be attributed to most of these activities occurring outside the home (e.g., visiting with friends). Due to reduced performance capacity in many survivors of stroke and higher demands on performance within the community-based environment (Kielhofner, 2002), community-based activities may be beyond their capacity, resulting in a loss in participation. Relationship Between Activity Participation and Cognitive Capacity Mild impairment in cognition has been previously identified as negatively impacting activity participation and an important factor in quality of life following mild stroke (Edwards et al., 2006). In the current study, a majority of participants (n = 24, 80%) were
found to have mild cognitive impairment, defined as scores less than 26 on the MoCA. However, it is important to realize that scores in the lower end of the scale may be indicative of more than just mild impairment. Similar to the study by Edwards et al., the cohort were, on average, considered to have had a mild stroke (mean NIHSS = 4.50). Our study found that those with even relatively mild impairment in cognition had significantly lower levels of participation in social/educational and high-demand leisure activities compared to those with no cognitive loss, as hypothesized. High-demand leisure and social/ educational activities are more complex activities to perform (e.g., require multiple cognitive functions such as problem solving and sequencing) (Edwards et al., 2006). Therefore, participation in these activities may expect to be lost with a reduced cognitive capacity following stroke, despite mild neurological impairment. However, a significant difference was also found for all other activity participation domains, suggesting that mild cognitive impairment has a broader impact on participation than highdemand leisure and social/educational activities alone. Activity Participation and Depression Depression following stroke has previously been reported as common with 34% reportedly experiencing depression (Lindén et al., 2007). In the current study, only a small number of the stroke sample were identified to experience depressive symptoms (n = 7, 23%). This is substantially lower when compared with studies conducted by Hartman-Maeir et al. (2006) in which 31% of a sample of 56 stroke survivors were identified as having probable depression. Likewise, Altindag, Soran, Demirkol, and Ozkul (2008) found that 39 of 40 stroke survivors in their study sample had mild to severe depression. Previous qualitative studies have identified post-stroke depression as having a significant impact on reduced activity participation levels following stroke (George et al., 2001; White et al., 2008). The current study did not find a significant difference in activity participation between those with and without depressive symptoms. However, a small convenience sample of stroke survivors with depressive symptoms in the current study may have reduced the ability to detect this phenomenon. Further, we were not able to define whether individuals had clinical depression or major depressive disorder. As has been identified in previous studies, having a larger sample of stroke survivors with depressive symptoms and more substantial depressive symptoms may have produced different results.
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Limitations A limitation of this study was the relatively small sample of 30 participants investigated. Further, generalization of results is limited with the sample primarily derived from metropolitan Melbourne with a lack of cultural diversity. Similar to Edwards et al. (2006), 77% of the sample was considered to have had a mild stroke. Further investigation of people with a wider range of neurological impairment following stroke is needed. The ability to detect an association may also be influenced by scores not being well distributed across the full scale range. It is noted that approximately 25% of the sample had the maximum 100% score for low-demand leisure, social/educational, and household domains, potentially reducing the ability to detect an association in these domains. In addition, a relatively small number of participants were identified as having depressive symptoms in the sample. The criterion used to detect presence of depressive symptoms (using the CES-D) and the selection process conducted in this study may have affected the number of participants with depressive symptoms recruited. A substantial number of participants reported depressive symptoms within the first 6 months following stroke; however, at the time of this study, an average of 58 months had elapsed since time of stroke. Finally, the ACS-Aus was developed for use with Australians 65 years and older (Packer et al., 2007) and some items were not relevant to all participants (especially those younger than 55 years). Further, the current ACS-Aus does not address work and study participation, commonly restricted following stroke, and was reported to be reduced by younger participants in this study. Implications for Practice This study found that reduced cognition has a negative association with participation in all activity domains, including high- and low-demand leisure, social/educational, and household activities following stroke. This was evident in a sample with primarily mild impairment in cognition and mild neurological impairment. Based on these findings, occupational therapy in stroke rehabilitation should ideally focus on return to participation in the full range of life activities, even in people who have relatively mild impairment in cognition after stroke. The benefits of using a quantitative measure of activity participation following stroke (the ACS) to accurately identify particular activities that an individual finds difficult to perform or has given up as a result of residual impairments related to stroke has been highlighted in this study.
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Conclusion Loss of activity participation following stroke is significantly associated with cognitive capacity. Cognitive loss following stroke has a negative association with participation in a wide range of activities: high-demand leisure, low-demand leisure, social/educational, and household. Despite previous findings identifying a significant relationship between depressive symptoms and activity participation, our ability to investigate this was limited. Further investigation of the relationship between depressive symptoms and participation following stroke in a larger cohort of Australian survivors of stroke is needed. Finally, development of the ACSAus to include activities for a wider age range of the adult Australian population, particularly work and study participation, would be of value because these are commonly reduced with onset of stroke. Acknowledgments
The authors thank the participants for their time and interest in participating in this study. They also thank Professor Tanya Packer, author of the ACS-Aus, Professor, School of Occupational Therapy, Dalhousie University, and Adjunct Professor, Curtin Health Innovation Research Institute, Curtin University for a pre-publication research version of the tool for use in this study. This project was supported by an Australian National Stroke Foundation Honours grant awarded to the first author (JS); a National Health and Medical Research Council Career Development Award and Australian Research Council Future Fellowship awarded to the senior author (LC); and the Victorian Government’s Operational Infrastructure Support Program.
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