The Effects of a Blended Care Intervention in Partners of Patients With Acquired Brain Injury - Results of the CARE4Carer Randomized Controlled Trial.

OBJECTIVE: To assess effects of the CARE4Carer blended care intervention on caregiver mastery and psychosocial functioning compared with usual care in partners of patients with acquired brain injury (ABI). DESIGN: Multicenter randomized controlled trial. SETTING: Nine sites for rehabilitation medicine. PARTICIPANTS: 120 partners of outpatients with ABI were randomly allocated to blended care (N=59) or usual care (N=61). INTERVENTION: The blended care intervention (20 weeks) was aimed at improving caregiving skills and consisted of 9 online sessions, combined with 2 face-to-face consultations with a social worker. MAIN OUTCOME MEASURES: Mastery was assessed with the Caregiver Mastery Scale, secondary outcome measures were caregiver strain (Caregiver Strain Index), family functioning (Family Assessment Device), anxiety and depression (Hospital Anxiety and Depression Scale), burden (self-rated), and quality of life (CarerQol). Assessments were performed at baseline, 24, and 40 weeks. RESULTS: The adjusted mean difference in caregiver mastery between intervention and control group at week 24 was 1.31 (SD3.48, 95% confidence interval (CI) -0.12 to 2.74, P=.072) and at week 40 was 1.31 (SD3.69, 95% CI -0.26 to 2.88, P=.100). In the per protocol analysis, the adjusted mean difference in caregiver mastery at week 24 was 1.53 (SD3.38, 95% CI 0.10 to 2.96, P=.036) and at week 40 was 1.57 (SD3.63, 95% CI 0.01 to 3.14, P=.049). Regarding secondary outcomes, caregiver strain was lower in the intervention group in the per protocol analysis at week 40. Family functioning was higher in the intervention group in week 24, whereas anxiety was lower at both timepoints. CONCLUSIONS: In the subset of participants who were able to complete the intervention, caregiver mastery and psychosocial functioning improved. Future work should focus on improving adherence as this will optimize beneficial effects of blended care.

Burden, anxiety and depressive symptoms in partners - course and predictors during the first two years after stroke.

BACKGROUND: Partners of patients with stroke are at high risk for burden, anxiety and depressive symptoms. Previous studies have reported contradictory results and did not investigate these three courses simultaneously. In this study we comprehensively studied the courses and predictors of burden, anxiety and depressive symptoms in partners of patients with stroke during the first two years after stroke. They were analyzed as outcomes as well as predictors for each other. METHODS: Six general hospitals recruited 215 patients with stroke and their partners for a longitudinal cohort study. Mixed model analyses were performed for burden (CSI), anxiety (HADS-A) and depressive symptoms (HADS-D) as time-varying outcome variables, measured at four time points during two years after stroke. RESULTS: Burden and depressive symptoms did not significantly change over time, whereas anxiety symptoms initially decreased followed by an increase. Higher burden was predicted by partners' younger age, higher education, more symptoms of anxiety and depression, and by patients' greater stroke severity, lower cognitive functioning and more symptoms of anxiety and depression. More anxiety symptoms were predicted by higher burden, more depressive symptoms, and lower self-efficacy of the partner. More depressive symptoms were predicted by older age, higher burden, more symptoms of anxiety, less proactive coping strategies of the partner, and more depressive symptoms of the patients. CONCLUSIONS: Burden, anxiety and depressive symptoms are interrelated and become chronic in partners of patients with stroke. It is important to screen partners early after stroke to identify partners who are at risk for negative outcomes.

The longitudinal association between movement behavior patterns and the course of participation up to one year after stroke.

PURPOSE: (1) To investigate the differences in the course of participation up to one year after stroke between distinct movement behavior patterns identified directly after discharge to the home setting, and (2) to investigate the longitudinal association between the development of movement behavior patterns over time and participation after stroke. MATERIALS AND METHODS: 200 individuals with a first-ever stroke were assessed directly after discharge to the home setting, at six months and at one year. The Participation domain of the Stroke Impact Scale 3.0 was used to measure participation. Movement behavior was objectified using accelerometry for 14 days. Participants were categorized into three distinct movement behavior patterns: sedentary exercisers, sedentary movers and sedentary prolongers. Generalized estimating equations (GEE) were performed. RESULTS: People who were classified as sedentary prolongers directly after discharge was associated with a worse course of participation up to one year after stroke. The development of sedentary prolongers over time was also associated with worse participation compared to sedentary exercisers. CONCLUSIONS: The course of participation after stroke differs across distinct movement behavior patterns after discharge to the home setting. Highly sedentary and inactive people with stroke are at risk for restrictions in participation over time.Implications for rehabilitationThe course of participation in people with a first-ever stroke up to one year after discharge to the home setting differed based on three distinct movement behavior patterns, i.e., sedentary exercisers, sedentary movers and sedentary prolongers.Early identification of highly sedentary and inactive people with stroke after discharge to the home setting is important, as sedentary prolongers are at risk for restrictions in participation over time.Supporting people with stroke to adapt and maintain a healthy movement behavior after discharge to the home setting could prevent potential long-term restrictions in participation.

Validity of the Utrecht scale for evaluation of rehabilitation-participation restrictions scale in a hospital-based stroke population 3 months after stroke.

BACKGROUND: The Utrecht Scale for Evaluation of Rehabilitation-Participation Restrictions scale (USER-P-R) is a promising patient-reported outcome measure, but has currently not been validated in a hospital-based stroke population. OBJECTIVE: To examine psychometric properties of the USER-P-R in a hospital-based stroke population 3 months after stroke onset. METHODS: Cross-sectional study including 359 individuals with stroke recruited through 6 Dutch hospitals. The USER-P-R, EuroQol 5-dimensional 5-level questionnaire (EQ-5D-5 L), Patient Reported Outcomes Measurement Information System 10-Question Global Health Short Form (PROMIS-10), modified Rankin Scale (mRS) and two items on perceived decrease in health and activities post-stroke were administered in a telephone interview 3 months after stroke. The internal consistency, distribution, floor/ceiling effects, convergent validity and discriminant ability of the USER-P-R were calculated. RESULTS: Of all participants, 96.9% were living at home and 50.9% experienced no or minimal disabilities (mRS 0-1). The USER-P-R showed high internal consistency (α = 0.90) and a non-normal left-skewed distribution with a ceiling effect (21.4% maximum scores). A substantial proportion of participants with minimal disabilities (mRS 1) experienced restrictions on USER-P-R items (range 11.9-48.5%). The USER-P-R correlated strongly with the EQ-5D-5 L, PROMIS-10 and mRS. The USER-P-R showed excellent discriminant ability in more severely affected individuals with stroke, whereas its discriminant ability in less affected individuals was moderate. CONCLUSIONS: The USER-P-R shows good measurement properties and provides additional patient-reported information, proving its usefulness as an instrument to evaluate participation after 3 months in a hospital-based stroke population.

Differences in Societal Participation Across Diagnostic Groups: Secondary Analyses of 8 Studies Using the Utrecht Scale for Evaluation of Rehabilitation-Participation.

OBJECTIVE: To determine differences in participation problems between diagnostic groups and to examine diagnosis as a determinant of participation with and without statistically accounting for confounders. DESIGN: Secondary analyses of data from 8 studies. SETTING: Community, the Netherlands. PARTICIPANTS: Participants (N=1735) in diagnostic groups: stroke (n=534), subarachnoid hemorrhage (n=104), other acquired brain injury (n=163), progressive neurologic diseases (n=112), acute coronary syndrome (n=536), and spinal cord injury (n=286). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participation was measured with the Utrecht Scale for Evaluation of Rehabilitation-Participation. This measure has 3 scales: Restrictions, Satisfaction, and Frequency. In this study, scores were also computed for 3 domains across these scales: Productivity, Leisure, and Social. Scores ranged from 0 (worst) up to 100 (best). Possible confounders were age, sex, level of education, marital status, and time since onset of the condition. RESULTS: Significant differences were found in levels of participation between diagnostic groups. Individuals with acute coronary syndrome showed better participation scores in all scales and domains compared with most or all other diagnostic groups, except for the Social domain. Individuals with progressive neurologic diseases showed the lowest (worst) Restriction and Satisfaction scores, whereas those with stroke showed the lowest Frequency scores. After correcting for confounders, diagnosis explained significant proportions of the variance of participation (Frequency, 6.4%; Restrictions, 15.1%; Satisfaction, 5.1%; Productivity, 13.2%; Leisure, 13.8%; Social, 6.9%). CONCLUSIONS: Participation problems occurred in all 6 diagnostic groups within this study. Differences were found in participation between diagnostic groups, demonstrating diagnosis-specific participation profiles, including after correcting for confounders.

Prevalence of cognitive impairment and change in patients with breast cancer: A systematic review of longitudinal studies.

OBJECTIVE: Patients with breast cancer face cognitive impairment that affects their quality of life; partially attributable to treatment. Our aim was to detail the prevalence and change of cognitive impairment during the course of treatment. We also investigated the effect of therapy (chemotherapy [CT]) vs. radiotherapy and/or endocrine therapy vs. healthy controls). METHODS: This article reviews longitudinal cohort studies published to date in Medline and Embase that (i) assess cognition before and after therapy, (ii) report prevalence cognitive impairment or change, and (iii) use standardized and valid neuropsychological tests. We used the original authors' criteria for cognitive impairment. RESULTS: The title and abstract of 891 articles were screened, resulting in the identification of 90 potentially relevant articles while applying the eligibility criteria. After full-text examination, 17 studies were included. Prevalence of cognitive impairment range from 25% before therapy, through 24% after therapy to 21% at maximal 1-year follow-up (FU). Compared to their pretreatment cognitive functioning, 24% of patients decline after treatment and 24% at 1-year FU. Some studies also reported cognitive improvement showing that 15% and 31% of patients improve, respectively. In general, patients undergoing CT have a higher chance of cognitive impairment and decline than no-CT patients and healthy controls. CONCLUSIONS: This study shows that one out of four breast cancer patients shows cognitive impairment prior to treatment administration CT and a significant number of patients decline during the course of disease, suggesting that cognitive impairment is not exclusively related to CT and/or no-CT therapies. This study shows that assessment of cognitive functioning, ideally over time, is crucial and may help the implementation of personalized rehabilitation pathways.

Comparison between EQ-5D-5L and PROMIS-10 to evaluate health-related quality of life 3 months after stroke: a cross-sectional multicenter study.

BACKGROUND: Although the use of patient-reported outcome measures to assess Health-Related Quality of Life (HRQoL) has been advocated, it is still open to debate which patient-reported outcome measure should be preferred to evaluate HRQoL after stroke. AIM: To compare the measurement properties (including concurrent validity and discriminant ability) between the 5-dimensional 5-level EuroQol (EQ-5D-5L) and the Patient-Reported Outcomes Measurement Information System 10-Question Global Health Short Form (PROMIS-10) to evaluate HRQoL 3 months after stroke. DESIGN: Cross-sectional study. SETTING: Neurology outpatient clinics in 6 Dutch hospitals. POPULATION: The participants 360 consecutive individuals with stroke. Their median age was 71 years, 143 (39.7%) were female and 335 (93.0%) had suffered an ischemic stroke. METHODS: The EQ-5D-5L, PROMIS-10, modified Rankin Scale and two items on experienced decrease in health and activities post-stroke were administered by a stroke nurse or nurse practitioner through a telephone interview 3 months after stroke. The internal consistency, distribution, floor/ceiling effects, inter-correlations and discriminant ability (using the modified Rankin Scale and experienced decrease in health and in activities post-stroke as external anchors) were calculated for both the EQ-5D-5L and PROMIS-10. RESULTS: Ninety-six percent of the participants were living at home and 50.9% experienced minimal or no disabilities (modified Rankin Scale 0-1) 3 months after stroke. A ceiling effect and a non-normal left skewed distribution were observed in the EQ-5D-5L. The PROMIS-10 showed higher internal consistency (α=0.90) compared to the EQ-5D-5L (α=0.75). Both the EQ-5D-5L and the PROMIS-10 were strongly correlated with the modified Rankin Scale (r=0.62 and 0.60 respectively). The PROMIS-10 showed better discriminant ability in less affected individuals with stroke, whereas the EQ-5D-5L showed slightly better discriminant ability in more affected individuals with stroke. CONCLUSIONS: Both EQ-5D-5L and PROMIS-10 prove to be useful instruments to evaluate HRQoL in patients who are living at home 3 months after stroke. CLINICAL REHABILITATION IMPACT: The clinical rehabilitation impact depended on the setting and underlying goal which patient-reported outcome measure is preferred to evaluate HRQoL 3 months after stroke. The PROMIS-10 should be preferred to detect differences in less affected stroke patients, whereas the EQ-5D-5L provides slightly more information in more affected stroke patients.

A trial-based economic evaluation of the Restore4Stroke self-management intervention compared to an education-based intervention for stroke patients and their partners.

BACKGROUND: Since stroke survivors are increasingly responsible for managing stroke-related changes in their own health and lifestyle, self-management skills are required. In a recent randomised controlled trial a self-management intervention based on proactive coping action planning (SMI) in comparison with an education-based intervention (EDU) in stroke patients was investigated. However, no relevant treatment effects on the Utrecht Proactive Coping Competence scale (UPCC) and the Utrecht Scale for Evaluation of Rehabilitation Participation (USER-Participation) were found. The current study is a trial-based economic evaluation from a societal perspective comparing the same interventions (SMI versus EDU). METHODS: UPCC, USER-Participation and EuroQol (EQ-5D-3 L) and costs were measured at baseline, three, six and twelve months after treatment. For the cost-effectiveness analyses, incremental cost effectiveness ratios (ICERs) were calculated for UPCC and USER-Participation. For the cost-utility analyses the incremental cost utility ratio (ICUR) was expressed in cost per Quality Adjusted Life Years (QALYs). Outcomes were tested by means of AN(C)OVA analyses and costs differences by means of bootstrapping. Bootstrapping, sensitivity analyses and a subgroup analysis were performed to test the robustness of the findings. RESULTS: One hundred thirteen stroke patients were included in this study. The mean differences in USER-Participation scores (95%CI:-13.08,-1.61, p-value = .013) were significant different between the two groups, this does not account for UPCC scores (95%CI:-.267, .113, p-value = not significant) and QALYs (p-value = not significant) at 12 months. The average total societal costs were not significantly different (95%CI:€-3380,€7099) for SMI (€17,333) in comparison with EDU (€15,520). Cost-effectiveness analyses showed a mean ICER of 26,514 for the UPCC and 346 for the USER-Participation. Cost-utility analysis resulted in an ICUR of €44,688 per QALY. Assuming a willingness to pay (WTP) threshold of €50,000 per QALY, the probability that SMI will be cost-effective is 52%. Sensitivity analyses and subgroup analysis showed the robustness of the results. CONCLUSIONS: SMI is probably not a cost-effective alternative in comparison with EDU. Based on the current results, the value of implementing SMI for a stroke population is debatable. We recommend further exploration of the potential cost-effectiveness of stroke-specific self-management interventions focusing on different underlying mechanisms and using different control treatments.

Participation restrictions in patients after surgery for cerebral meningioma.

OBJECTIVES: To examine participation restrictions in patients after surgery for cerebral meningioma and to explore possible determinants of participation. DESIGN: Cross-sectional study. PATIENTS: Patients who had surgery for cerebral meningioma at the University Medical Center Utrecht, The Netherlands, between 2007 and 2009. METHODS: Clinical data were retrieved from medical files, and patients completed a postal questionnaire. Participation restrictions were measured with the Utrecht Scale for Evaluation of Rehabilitation-Participation. RESULTS: Of the 194 eligible patients, 76% (n = 136) participated in this study. Mean time after surgery was 32.6 months (standard deviation 10.6 months). Overall, patients showed favourable levels of participation. Nevertheless, many patients reported one or more problems of participation. Restrictions were most frequently reported regarding household duties, work or education. Twenty-three patients (32.9% of those who were in work before the meningioma) were not able to resume their job after surgery. Dissatisfaction was reported particularly regarding sports or other physical exercise. The presence of cognitive or emotional problems, multiple comorbidities and epilepsy were related to more participation problems. CONCLUSION: Patients who have had surgery for cerebral meningioma experience participation restrictions. The results of this study can be used to identify patients at risk of developing participation problems and to tailor rehabilitation goals.

Longitudinal course of depressive symptoms and anxiety after aneurysmal subarachnoid hemorrhage.

BACKGROUND: Symptoms of anxiety and depression are present in almost half of the patients who survive an aneurysmal subarachnoid hemorrhage (aSAH), but the long-term course is unknown. AIM: To study the longitudinal course and predictors of symptoms of anxiety and depression after aSAH. DESIGN: Prospective longitudinal study with test occasions at 3 months (baseline), 1 year (T2) and 2-5 years (T3) post-aSAH. SETTING: SAH outpatient clinic. POPULATION: One hundred forty-three patients visiting the outpatient clinic. METHODS: Patients visiting our outpatient clinic 3 months after aSAH and living independently in the community completed the Beck Depression Inventory-II-NL and the State-Trait Anxiety Inventory at 3 months (T1), one year (T2) and 2-5 years (T3). Potential predictors were collected at T1. RESULTS: Complete datasets from 93 patients were analyzed. Depressive symptoms were present in 39% (T1), 41% (T2) and 54% (T3) of patients, symptoms of anxiety in 52% (T1), 48% (T2) and 53% (T3). Of patients with depressive symptoms at T1, 72% still had symptoms at T3, compared to 67% for anxiety. Disability on the Glasgow Outcome Scale (GOS), passive coping (UCL-PR) and depressive symptoms at T1 were significantly independent variables explaining 52% of the variance of depressive symptoms at T2. GOS and UCL-PR at T1 were variables explaining 25% of the variance of depressive symptoms at T3. Depressive symptoms and anxiety at T1 were predictive variables for anxiety at T2 (explained variance 43%) and UCL-PR for anxiety at T3 (explained variance 21%). CONCLUSIONS: The prevalence of symptoms of depression and anxiety remained high during the first 2-5 years after aSAH. Passive coping at 3 months after aSAH was the most consistent predictor of symptoms of anxiety and depression in the long term. CLINICAL REHABILITATION IMPACT: Since many patients who are initially free of symptoms of depression and anxiety develop such symptoms over time, we advocate screening for these symptoms and coping strategies to identify these patients and apply targeted therapy.

Effectiveness of the Restore4Stroke self-management intervention "Plan ahead!": A randomized controlled trial in stroke patients and partners.

OBJECTIVE: To investigate the effectiveness of a self-management intervention aimed at proactive coping for stroke patients and partners, compared with an education intervention. DESIGN: Multicentre randomized controlled trial. PARTICIPANTS: The study included 113 stroke patients (mean age 57.0 years (standard deviation (SD) 9.0), mean 18.8 months after stroke (SD 28.4)) and 57 partners (mean age 59.2 years (SD 8.3)). METHODS: Participants were randomized to a self-management intervention, or an education intervention, both 10 weeks' duration, outpatient, stroke-specific, and group-based. Main patient inclusion criteria were symptomatic stroke (≥ 6 weeks previously) and reporting ≥ 2 restrictions on the Restriction subscale of the Utrecht Scale for Evaluation of Rehabilitation Participation. Measurements were performed immediately after intervention, and at 3 and 9 months follow-up. Primary patient and partner outcomes were proactive coping and participation restrictions. Analyses were based on linear mixed modelling. RESULTS: A significant effect was found only in partners' increased proactive coping at T2 (compared with education intervention). Beneficial trends were found for the self-manage-ment intervention in partners' self-efficacy and patients' health-related quality of life, mood complaints and participation restriction. CONCLUSION: Little convincing evidence was found favouring our self-management intervention over the education intervention; therefore, the self-management intervention should not be implemented yet in clinical practice. Further research is needed to explore beneficial trends.

Course of social support and relationships between social support and patients' depressive symptoms in the first 3 years post-stroke.

OBJECTIVE: To describe the course of social support (everyday support, support in problem situations and esteem support) from initial inpatient rehabilitation until 3 years post-stroke and to examine the cross-sectional and longitudinal relationships of social support with depressive symptoms. DESIGN: Prospective cohort study. SUBJECTS: A total of 249 stroke patients. METHODS: Depressive symptoms were measured with the Center of Epidemiologic Studies Depression Scale. Perceived social support was assessed with the Social Support List-Interaction. Pearson correlations and multilevel analysis were performed. RESULTS: More than one-third of participants had depressive symptoms. Social support and its 3 subtypes declined significantly over time. Divergent relationships were found between subtypes of social support and depressive symptoms. Everyday support and esteem support had negative associations with depressive symptoms, whereas support in problem situations had a positive association. Social support in problem situations was a predictor of depressive symptoms over time. No effect-modification by participants with physical or cognitive limitations was found. CONCLUSION: Stroke survivors experience a decline in social support over time. Various subtypes of support show distinct relationships with depressive symptoms. Healthcare professionals should focus on the various subtypes of support when supporting patients to improve and maintain an adequate social support network.

Associations of proactive coping and self-efficacy with psychosocial outcomes in individuals after stroke.

OBJECTIVE: To examine the associations of proactive coping and self-efficacy with psychosocial outcomes in individuals after stroke. DESIGN: Cross-sectional study. Regression analyses were performed. SETTING: Outpatient settings of hospitals and rehabilitation centers. PARTICIPANTS: Individuals after stroke (N=112; mean age ± SD, 57.1±8.9y; mean time ± SD since stroke, 18.9±28.5mo). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Proactive coping was measured using the Utrecht Proactive Coping Competence scale (UPCC), and self-efficacy was measured using the General Self-Efficacy Scale (GSES). Psychosocial outcomes were measured as (1) participation with the use of the restriction and satisfaction subscales of the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation); (2) emotional problems with the use of the Hospital Anxiety and Depression Scale (HADS); (3) life satisfaction with the use of 2 questions (2LS); and (4) health-related quality of life (HRQOL) with the use of the Short Stroke-Specific Quality of Life scale (SS-QOL-12). RESULTS: Higher UPCC scores were associated with lower HADS scores (ß=-.55, P<.001) and with higher USER-Participation satisfaction (ß=.31, P=.001), 2LS (ß=.34, P<.001), and SS-QOL-12 scores (ß=.44, P<.001). The influence of UPCC scores on HRQOL was indirect through self-efficacy. Higher GSES scores were associated with higher UPCC scores (ß=.65, P<.001), which in turn were associated with lower HADS scores (ß=-.51, P<.001). GSES scores were directly associated with higher SS-QOL-12 scores (ß=.32, P=.002). GSES scores did not influence the association between UPCC scores and any of the psychosocial outcomes (all P>.0025). CONCLUSIONS: Proactive coping and self-efficacy have different associations with each of the psychosocial outcomes. Therefore, outcome-specific models appear to be necessary to describe these associations.

Cognitive and emotional problems in patients after cerebral meningioma surgery.

OBJECTIVES: To determine long-term cognitive complaints and symptoms of depression or anxiety in patients following surgery for a cerebral meningioma, and to examine factors associated with these outcomes. DESIGN: Cross-sectional study. PATIENTS: Patients operated on for a cerebral meningioma in the University Medical Center Utrecht, The Netherlands, between 2007 and 2009. METHODS: Clinical data were retrieved from medical files. Patients completed a postal questionnaire. Cognitive complaints were measured with the Cognitive Failures Questionnaire. A score above 43.5 was defined as presence of cognitive complaints. Anxiety and depressive symptoms were measured with the Hospital Anxiety and Depression Scale, and were considered present if the scale score was ≥ 8. RESULTS: The response rate was 76% (n = 136). Mean time after operation was 32.6 months (standard deviation 10.6 months). Overall, 40% of patients experienced cognitive and/or emotional problems. Thirty-one patients (23%) experienced cognitive complaints, 39 (29%) showed anxiety, and 31 (23%) showed depressive symptoms. Country of birth and previous depression/burn-out were the most important factors. Scores on all outcome measures were related to each other. CONCLUSION: Forty percent of patients experienced cognitive or emotional problems following surgery for a cerebral meningioma. Screening for these problems is therefore important in order to provide patients with the care they require as soon as possible.

Proactive coping poststroke: psychometric properties of the Utrecht Proactive Coping Competence Scale.

OBJECTIVE: To examine psychometric properties of the Utrecht Proactive Coping Competence scale (UPCC) and explore relations of proactive coping with health-related quality of life (HRQOL) and characteristics of patients with stroke. DESIGN: Cross-sectional study. Reliability and convergent validity, and associations with HRQOL and characteristics of patients with stroke were examined. SETTING: Inpatient and outpatient settings of hospitals and rehabilitation centers in The Netherlands. PARTICIPANTS: Patients with stroke (N=55; mean age, 58.7±12.8y; mean months since stroke, 25.0± 38.5). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: UPCC, Utrecht Coping List (UCL), and the short Stroke Specific Quality of Life scale (SS-QOL-12). RESULTS: The UPCC showed excellent reliability (Cronbach's α=.95) without floor/ceiling effects or skewed score distribution. Convergent validity was shown by moderate positive relations with the UCL subscale active problem solving (r=.38) and moderate negative relations with the UCL subscales passive reactions (r=-.50), avoidance (r=-.40), and expression of emotions (r=-.42). Correlations between the UPCC and HRQOL domains were moderate to strong (r=.48-.61) and stronger than those between UCL subscales and HRQOL domains. The only characteristic of patients with stroke associated with proactive coping was time after stroke (r=-.52). CONCLUSIONS: The UPCC appears reliable and valid for patients with stroke. Moreover, we found positive associations between proactive coping and HRQOL. Future research is recommended to confirm our results and to explore ways to enhance proactive coping in patients with stroke.

Study protocol of the Restore4Stroke self-management study: a multicenter randomized controlled trial in stroke patients and their partners.

RATIONALE: Many stroke patients and their partners report long-term negative consequences of stroke on their health-related quality of life. Adequate self-management abilities may help manage the consequences of the stroke, but it is unknown what specific intervention might be effective to enhance self-management abilities of stroke patients and their partners. AIM: The study aims to investigate the effectiveness of a 10-week group self-management intervention addressing proactive coping strategies compared with a group education intervention in stroke patients and their partners. DESIGN: The study is a multicenter randomized controlled trial. A total of 106 stroke patients with, if applicable, their partners are randomly assigned to the self-management intervention or the education intervention within each of the 10 participating hospitals and rehabilitation centers. The main inclusion criteria are a symptomatic stroke at least six-weeks ago, living at home, and reporting at least two participation restrictions on the Utrecht Scale for Evaluation of Rehabilitation-Participation's restriction scale. Measurements are performed at baseline, immediately after intervention, three-months, and nine-months postintervention. STUDY OUTCOMES: Primary outcome measures are stroke patients' and partners' proactive coping competencies (Proactive Competence Inventory) and societal participation (Utrecht Scale for Evaluation of Rehabilitation-Participation's restriction scale). DISCUSSION: If effective, the results of this study will enable stroke patients and their partners to deal better with the lasting consequences of stroke. In the context of the growing number of people returning home after stroke, a large number of people may profit from this intervention.

Screening for poststroke depression using the patient health questionnaire.

BACKGROUND: Although poststroke depression has a significant impact on a patient's ability to recover after stroke, it is generally not recognized. Structured screening can help nurses identify symptoms of depression in stroke patients. In clinical practice, the utility of an instrument is as importantas its validity and reliability. OBJECTIVE: To investigate the reliability, validity, and clinical utility of the nine-item and two-item patient health questionnaires (PHQ-9 and PHQ-2, respectively) in stroke patients in a clinical nursing setting. The results of these questionnaires will be compared against those from the Geriatric Depression Scale. METHODS: The PHQ-9 was administered by 43 ward nurses in 55 patients with an intracerebral hemorrhage or ischemic infarction who were able to communicate adequately. The interrater reliability, test-retest reliability and internal consistency, concurrent validity, diagnostic accuracy, and clinical utility were evaluated. RESULTS: The interrater reliability (intraclass correlation [ICC] = 0.98, 95% CI [0.96, 0.99]), test-retest reliability (ρ(Sp) = 0.75, p < .001), and internal consistency (Cronbach's α = 0.79) of the PHQ-9 were good. The concurrent validity was moderate for the PHQ-9, with a Pearson's correlation of .7 (p < .001) and acceptable for the PHQ-2 with a Pearson's correlation of .8 (p < .01). The optimum cutoff point of the PHQ-9 for major depression was 10 (sensitivity, 100%; specificity,86%; positive predicted value, 50%; and negative predicted value, 100%). For the PHQ-2, the optimum cutoff point was 2 (sensitivity, 100%; specificity, 77%; positive predicted value, 38%; and negative predicted value, 100%). DISCUSSION: The PHQ is a brief and easy-to-use instrument for nursing practice. It shows good reliability, validity, and clinical utility when used in stroke patients who are able to communicate adequately.

Respite care after acquired brain injury: the well-being of caregivers and patients.

OBJECTIVE: To investigate satisfaction with respite care, the well-being of informal caregivers and patients with acquired brain injury (ABI) who receive respite care by day-care activity centers, and factors related to caregiver well-being. DESIGN: Cross-sectional cohort study. SETTING: Adult day-care activity centers. PARTICIPANTS: A sample of caregivers and patients (N=108) with ABI (mean of 8y since injury) enrolled in 1 of 7 day-care activity centers. The sample consisted predominantly (70%) of stroke patients. INTERVENTION: Respite care by adult day-care activity centers. MAIN OUTCOME MEASURES: Well-being was defined in terms of life satisfaction (Life Satisfaction Questionnaire [LiSat-9]), emotional functioning (Hospital Anxiety and Depression Scale [HADS]), and caregiver burden (Caregiver Strain Index [CSI]). Factors related to well-being were personal, injury related, and psychological. RESULTS: Satisfaction with day-care activity center care was high for caregivers (7.8) and patients (8.1). Caregiver satisfaction with care was unrelated to caregiver well-being. Most caregivers (61%) showed low life satisfaction and high subjective burden (69%), and 33% of caregivers and 42% of the patients reported depressive symptoms. Caregiver well-being was positively correlated with a high sense of mastery of caregivers and patients and low passive coping of the patient (LiSat-9 R(2)=.32; HADS R(2)=.55; CSI R(2)=.35). CONCLUSIONS: This study emphasizes the need for care for both caregivers and patients in the chronic phase after ABI. Although respite care is highly appreciated, it is not sufficient for caregivers to attain a healthy level of well-being. Results indicate that caregiver well-being might improve by targeting passive coping and mastery skills of caregivers and patients. Continuous support for both caregivers and patients is needed.

Life satisfaction of couples 3 years after stroke.

PURPOSE: To compare the life satisfaction of stroke patients to that of their spouses, and to examine spouses' variables as determinants of the patients' life satisfaction. METHOD: Patients with a first-ever stroke who were admitted to an inpatient rehabilitation centre and their spouses were included (n=78 couples). Measurements took place 3 years after the stroke. Life satisfaction was measured using the Life Satisfaction Questionnaire (LiSat-9). RESULTS: More spouses (50%) than patients (28%) were dissatisfied with their life as a whole. Spouses were also more likely to be dissatisfied with all other domains of life satisfaction than patients. The associations between the life satisfaction of patients and of spouses were weak (Cramer's V 0.00-0.43). In the backward linear regression analysis both patients' participation in social activities and spouses' life satisfaction were significantly related to patients' life satisfaction. A total of 17.8% of the variance of patients' life satisfaction could be explained by the model. CONCLUSIONS: Both spouse and patient in a couple experience decreased life satisfaction in the chronic phase after stroke, spouses even more so than patients. The life satisfaction of stroke patients was significantly related to spouses' life satisfaction. Family-centred care should be an important part of the rehabilitation process. [ IMPLICATIONS FOR REHABILITATION: • Both spouse and patient in a couple experience decreased life satisfaction in the chronic phase after stroke.• The life satisfaction of stroke patients was significantly related to spouses' life satisfaction.• Family-centred care, in which the spouse is closely involved, should be an important part of the rehabilitation process.]

Social activity one and three years post-stroke.

OBJECTIVE: To determine the long-term course of social activity after a stroke. DESIGN: Prospective cohort study. PATIENTS: Patients with a first-ever supratentorial stroke were selected in 4 Dutch rehabilitation centres. METHODS: Social activity was measured by the Frenchay Activities Index (FAI) at 1 and 3 years post-stroke to determine social activity. Changes in FAI scores ≥ 7 points were considered real change. RESULTS: Data from 190 patients were available for analysis. The mean FAI score was stable between 1 and 3 years post-stroke. A decline in social activity was seen in 12% of all individuals and improvement in another 12%. Inactivity at 1 year post-stroke was strongly associated with inactivity at 3 years post-stroke (odds ratio (OR) = 19.9; 95% confidence interval (CI) 9.1-43.3). Motor impairment of the leg (OR = 0.39; 95% CI 0.15-0.97) and being socially inactive at 1 year post-stroke (OR = 0.19; 95% CI 0.04-0.84) were associated with a lower risk of decline in FAI scores. CONCLUSION: For the majority of stroke patients, the level of social activity is stable during the chronic phase (beyond 1 year post-stroke). Only 1 in 10 patients showed improvement, and 1 in 10 declined. The level of social activity at 1 year post-stroke is indicative of the level of social activity at 3 years post-stroke. Rehabilitation professionals should focus their follow-up programmes on patients inactive at 1 year post-stroke, as this group is at risk for chronic inactivity, and should be stimulated to achieve social reintegration.