Trajectories of fatigue and related outcomes following mild acquired brain injury: a multivariate latent class growth analysis.

OBJECTIVE: Fatigue is a common symptom following acquired brain injury although the severity and course differs for many individuals. This longitudinal study aimed to identify latent trajectory classes of fatigue and associated outcomes following mild brain injury. METHODS: 204 adults with mild traumatic brain injury (159; 78%) or minor stroke (45; 22%) were assessed 4 times over 1 year. Subjective measures of fatigue, anxiety, depression, cognitive complaints and societal participation were collected. Multivariate Latent Class Growth Analysis identified classes of participants with similar longitudinal patterns. Demographic and injury characteristics were used to predict class membership. RESULTS: Analysis revealed four classes. Class 1 (53%) had mild, decreasing fatigue with no other problems. Class 2 (29%) experienced high persistent fatigue, moderate cognitive complaints and societal participation problems. Class 3 (11%) had high persistent fatigue with anxiety, depression, cognitive complaints and participation problems. Class 4 (7%) experienced decreasing fatigue with anxiety and depression but no cognitive or participation problems. Women and older individuals were more likely to be in class 2. CONCLUSION: Half the participants had a favourable outcome while the remaining classes were characterised by persistent fatigue with cognitive complaints (class 2), decreasing fatigue with mood problems (class 4) or fatigue with both cognitive and mood problems (class 3). Fatigue treatment should target combinations of problems in such individual trajectories after mild brain injury.

The effects of etidronate on brain calcifications in Fahr's disease or syndrome: rationale and design of the randomised, placebo-controlled, double-blind CALCIFADE trial.

BACKGROUND: Fahr's disease and syndrome are rare disorders leading to calcification of the small arteries in the basal ganglia of the brain, resulting in a wide range of symptoms comprising cognitive decline, movement disorders and neuropsychiatric symptoms. No disease-modifying therapies are available. Studies have shown the potential of treatment of ectopic vascular calcifications with bisphosphonates. This paper describes the rationale and design of the CALCIFADE trial which evaluates the effects of etidronate in patients with Fahr's disease or syndrome. METHODS: The CALCIFADE trial is a randomised, placebo-controlled, double-blind trial which evaluates the effects of etidronate 20 mg/kg during 12 months follow-up in patients aged ≥ 18 years with Fahr's disease or syndrome. Etidronate and placebo will be administered in capsules daily for two weeks on followed by ten weeks off. The study will be conducted at the outpatient clinic of the University Medical Center Utrecht, the Netherlands. The primary endpoint is the change in cognitive functioning after 12 months of treatment. Secondary endpoints are the change in mobility, neuropsychiatric symptoms, volume of brain calcifications, dependence in activities of daily living, and quality of life. RESULTS: Patient recruitment started in April 2023. Results are expected in 2026 and will be disseminated through peer-reviewed journals as well as presentations at national and international conferences. CONCLUSIONS: Fahr's disease and syndrome are slowly progressive disorders with a negative impact on a variety of health outcomes. Etidronate might be a new promising treatment for patients with Fahr's disease or syndrome. TRIAL REGISTRATION: ClinicalTrials.gov, NCT05662111. Registered 22 December 2022, https://clinicaltrials.gov/ct2/show/NCT01585402 .

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.

Agreement and differences regarding family functioning between patients with acquired brain injury and their partners.

PRIMARY OBJECTIVE: To investigate the level of agreement and differences regarding the perception of family functioning between patients with acquired brain injury and their partners. Our hypothesis was that patients would report better family functioning than their partners. RESEARCH DESIGN: Cross-sectional studyMethods and Procedures: Baseline data were used from 77 patient-partner dyads (87.0% stroke) who were participating in the ongoing CARE4Patient and CARE4Carer trials. Family functioning was assessed using the General Functioning subscale of the McMaster Family Assessment Device (FAD-GF). Agreement was assessed with intraclass correlation coefficient, a Bland-Altman plot, percentages absolute agreement and weighted kappa values. Differences were tested with Wilcoxon signed-rank tests. MAIN OUTCOMES AND RESULTS: Patients and their partners differed in their perception of family functioning. Within-dyad agreement was poor regarding the overall FAD-GF scores with partners reporting significantly poorer family functioning compared to the patients (32.5% versus 18.2%). Agreement regarding the individual items ranged from slight to moderate. CONCLUSIONS: Health care professionals should assess family functioning after stroke in both patients and their partners, and any discrepancies should be discussed with both members of the patient-partner dyad.

Participation Restrictions and Satisfaction With Participation in Partners of Patients With Stroke.

OBJECTIVE: To investigate participation restrictions and satisfaction with participation in partners of patients with stroke. DESIGN: Cross-sectional study. SETTING: Five rehabilitation centers and 3 hospitals in The Netherlands. PARTICIPANTS: A consecutive sample of 54 partners of patients with stroke. The patients were participating in a multicenter randomized controlled trial. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participation restrictions as a result of the patient's stroke and satisfaction with participation measured with the Utrecht Scale for Evaluation of Rehabilitation-Participation. RESULTS: The number of participation restrictions differed between partners of patients with stroke. The median number of participation restrictions experienced was 2 for the 11 activities assessed. Most participation restrictions were reported regarding paid work, unpaid work, or education, relationship with partner (ie, patient), and going out. Partners were least satisfied regarding going out, sports or other physical exercise, and day trips and other outdoor activities. The participation restrictions and satisfaction with participation were significantly correlated (ρ=0.65; P<.001), although this relation between participation restrictions and satisfaction with participation differed for the various activities. Differences between satisfied partners with participation restrictions and dissatisfied partners concerned anxiety (U=93.0; P=.026), depression (U=81.5, P=.010), and the number of restrictions experienced (U=50.0; P<.001). CONCLUSIONS: There is great variety in restrictions experienced by partners regarding different activities and in their satisfaction with these activities. Specific assessment is therefore important when supporting partners of patients with stroke.

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.

Evaluating the CARE4Carer Blended Care Intervention for Partners of Patients With Acquired Brain Injury: Protocol for a Randomized Controlled Trial.

BACKGROUND: Support programs for partners of patients with acquired brain injury are necessary since these partners experience several unfavorable consequences of caregiving, such as a high burden, emotional distress, and poor quality of life. Evidence-based support strategies that can be included in these support programs are psychoeducation, skill building, problem solving, and improving feelings of mastery. A promising approach would seem to be to combine web-based support with face-to-face consultations, creating a blended care intervention. OBJECTIVE: This paper outlines the protocol of a randomized controlled trial to evaluate the CARE4Carer blended care intervention for partners of patients with acquired brain injury. METHODS: A multicenter two-arm randomized controlled trial will be conducted. A total of 120 partners of patients with acquired brain injury will be recruited from five rehabilitation centers in the Netherlands. The blended care intervention consists of a nine-session web-based support program and two face-to-face consultations with a social worker. Themes that will be addressed are: giving partners insight into their own situation, including possible pitfalls and strengths, learning how to cope with the situation, getting a grip on thoughts and feelings, finding a better balance in the care for the patient with acquired brain injury, thinking about other possible care options, taking care of oneself, and communication. The intervention lasts 20 weeks and the control group will receive usual care. The outcome measures will be assessed at baseline and at 24- and 40-week follow-up. The primary outcome is caregiver mastery. Secondary outcome measures are strain, burden, family functioning, emotional functioning, coping, quality of life, participation, and social network. RESULTS: The effect of the intervention on the primary and secondary outcome measures will be determined. Additional a process evaluation will be conducted. CONCLUSIONS: The findings of this study will be used to improve the care for partners of patients with acquired brain injury. Barriers and facilitators that emerge from the process evaluation will be used in the nationwide implementation of the intervention. TRIAL REGISTRATION: Dutch Trial Register NTR6197; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6197 (Archived by WebCite at http://www.webcitation.org/6xHBAxx0y).

A validation study of the Caregiver Mastery Scale for partners of patients with acquired brain injury.

OBJECTIVE: To validate the Caregiver Mastery Scale for partners of patients with acquired brain injury. DESIGN: The score distributions, internal consistency and convergent validity of the Caregiver Mastery Scale were determined. SUBJECTS: A total of 92 partners (53% male, age 62 years) of patients with acquired brain injury (91% stroke) discharged from inpatient rehabilitation (time since injury 32 months). MAIN MEASURES: Outcome measure: Caregiver Mastery Scale. Reference measures: Caregiver Strain Index, Hospital Anxiety and Depression Scale and CarerQoL. RESULTS: The Caregiver Mastery Scale has a normal distribution, with no floor or ceiling effects. Its internal consistency is acceptable (Cronbach's alpha: 0.75). The convergent validity analyses confirmed our hypothesis that higher scores on the Caregiver Mastery Scale correlate with less burden, lower levels of anxiety and depression and greater well-being. Furthermore, partners scoring high on the Caregiver Mastery Scale mostly scored below the clinical cut-off scores on the Caregiver Strain Index and the anxiety and depression subscales of the Hospital Anxiety and Depression Scale, whereas partners scoring low on the Caregiver Mastery Scale were more likely to score above the cut-off points. CONCLUSION: The Caregiver Mastery Scale is a valid instrument to assess the caregiver mastery of partners of patients with acquired brain injury.

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.

Process evaluation of the Restore4stroke Self-Management intervention 'Plan Ahead!': a stroke-specific self-management intervention.

OBJECTIVE: To investigate whether the self-management intervention was implemented as intended. Additionally, we studied involvement in and satisfaction with the intervention among patients, their partners and therapists. DESIGN: Mixed method, prospective study. SETTING: Outpatient facilities of hospitals/rehabilitation centres. PARTICIPANTS: Stroke patients, their partners and therapists from the experimental arm of the Restore4Stroke Self-Management study. INTERVENTION: 'Plan Ahead!' is a 10-week self-management intervention for stroke patients and partners, consisting of seven two-hour group sessions. Proactive action planning, education and peer support are main elements of this intervention. MAIN MEASURES: Session logs, questionnaires for therapists, patients and their partners, and focus groups. DATA ANALYSIS: Qualitative data were analysed with thematic analysis supplemented by quasi-statistics. Quantitative data were reported as descriptive statistics. RESULTS: The study sample consisted of 53 patients and 26 partners taking part in the intervention, and all therapists delivering the intervention (N = 19). At least three-quarters of the intervention sessions were attended by 33 patients and 24 partners. On a scale from 1 to 10, patients, partners and therapists rated the intervention with mean scores of 7.5 (SD1.6), 7.8 (SD.7) and 7.4 (SD.7), respectively. Peer support was the most frequently appreciated element for participants and therapists. The proactive action planning tool was adequately applied in 76 of the 96 sessions. CONCLUSION: Although the target audience was reached and both participants and therapists were satisfied with the intervention, the proactive action planning tool that distinguishes the current intervention from existing stroke-specific self-management interventions was only partly implemented according to protocol.

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.