Sanne Smeets

Psychometric properties and feasibility of instruments used to assess awareness of deficits after acquired brain injury: a systematic review.

Background:Unawareness of deficits after acquired brain injury (ABI) is often reported in the clinic. Several methods have been developed to measure a patients awareness of deficits after ABI; however, no criterion standard currently exists to measure this phenomenon. Objective:To review all instruments for measuring awareness of deficits and evaluate their psychometric and conceptual properties as well as their feasibility. Methods:Systematic literature search for available awareness measurement instruments used in experimental ABI studies. Instruments were divided into the following 4 assessment methods: clinician ratings, structured interviews, performance-based discrepancy, and self-other rating discrepancy methods. The quality of the instruments was evaluated. Results:The literature search identified 39 instruments and 8 of these were selected. The following 3 instruments stood out in terms of quality: Self-Awareness of Deficits Interview, Patient Competency Rating Scale, and Awareness Questionnaire. Conclusion:Although these quantitative instruments are useful tools in research, they have limited utility in the clinic because they only measure intellectual awareness. Therefore, in addition to these instruments, qualitative tools should also be used to gain a complete view of a patients awareness problem.

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.

Associations between executive functioning, coping, and psychosocial functioning after acquired brain injury

OBJECTIVES To examine the relationships between executive functioning, coping, depressive symptoms, and quality of life in individuals with neuropsychiatric symptoms after acquired brain injury (ABI). DESIGN Cross-sectional study. METHODS Individuals (n = 93) in the post-acute and chronic phase (>3 months) after ABI and their significant others (N = 58) were recruited from outpatient clinics of four mental health centres in the Netherlands. Outcome measures were the Trail Making Test, Stroop Colour Word Test, Frontal Systems Behavioural Scale, Utrecht Coping List, Patient Health Questionnaire, and Life Satisfaction Questionnaire. Data were analysed with multiple regression analyses. RESULTS Self-reported executive dysfunction was associated with greater use of passive coping styles (β = .37, p < .01), and passive coping, in turn, was associated with lower quality of life (β = -.57, p < .001) and more depressive symptoms (β = .65, p < .001). Problem-focused coping was associated with higher quality of life among individuals who reported better executive functioning (β = -.94, p < .05). Performances on executive functioning tests were not associated with coping, depressive symptoms, or quality of life. CONCLUSIONS For clinicians, these data indicate that individuals who report greater difficulties with executive functioning after ABI are inclined to use maladaptive passive coping styles, which should be targeted in treatment. In comparison, individuals who report greater difficulties with executive functioning should not be prompted to use problem-focused coping styles. These individuals may benefit from other coping styles, such as the use of seeking social support or acceptance of problems. PRACTITIONER POINTS Coping influences the association between executive functioning and quality of life. Individuals who report difficulties with executive functioning after ABI may be inclined to use passive coping styles, which are maladaptive. Problem-focused coping strategies may be more useful for individuals who have strong executive abilities. This study was a cross-sectional study; thus, a cause-and-effect relationship could not be established between executive functioning, coping, and psychosocial functioning. As this research was part of standard clinical care, non-traditional tests for executive functioning were not administered.

Treatment of unawareness of deficits in patients with acquired brain injury: a systematic review.

Objective:To review and evaluate the effectiveness and methodological quality of available treatment methods for unawareness of deficits after acquired brain injury (ABI). Methods:Systematic literature search for treatment studies for unawareness of deficits after ABI. Information concerning study content and reported effectiveness was extracted. Quality of the study reports and methods were evaluated. Results:A total of 471 articles were identified; 25 met inclusion criteria. 16 were uncontrolled or single-case studies. Nine were of higher quality: 2 randomized controlled trials, 5 single case experimental designs, 1 single-case design with pre- and posttreatment measurement, and 1 quasi-experimental controlled design. Overall, interventions consisted of multiple components including education and multimodal feedback on performance. Five of the 9 high-quality studies reported a positive effect of the intervention on unawareness in patients with some knowledge of their impairments. Effect sizes ranged from questionable to large. Conclusion:Patients with ABI may improve their awareness of their disabilities and possibly attain a level at which they personally experience problems when they occur. At present, because of lack of evidence, no recommendation can be made for treatment approaches for persons with severe impairment of self-awareness in the chronic phase of ABI. We recommended developing and evaluating theory-driven interventions specifically focused on disentangling the components of treatment that are successful in improving awareness. High-quality intervention studies are urgently needed using controlled designs (eg, single-case experimental designs, randomized controlled trials) based on a theoretic perspective with a detailed description of the content of the intervention and suitable outcome measures.

Impaired awareness of deficits in individuals with neuropsychiatric symptoms after acquired brain injury: associations with treatment motivation and depressive symptoms.

OBJECTIVE The purpose of this study was to investigate impaired awareness of deficits in relation to treatment motivation and depressive symptoms in patients with neuropsychiatric symptoms after acquired brain injury. METHOD The study had a Cross-sectional design with 93 outpatient brain injury patients with neuropsychiatric symptoms in the chronic phase after injury. Awareness was measured by the discrepancy in answers between patients and significant others and/or clinicians. Patients were divided into 3 awareness groups: underestimation, accurate estimation, and overestimation of competencies. Treatment motivation and depressive symptoms were measured with self-report questionnaires. RESULTS Average discrepancy scores suggested patients had accurate awareness of deficits. However, when dividing patients into 3 awareness groups, 30% underestimated, 38% accurately estimated, and 32% overestimated their competencies. Linear regression analysis with discrepancy scores showed overestimation of competencies (positive discrepancy scores) was associated with less depressive symptoms, whereas underestimation (negative discrepancy scores) was associated with more depressive symptoms (β = -.28 to -.42, p < .05). Group analysis revealed that the underestimation group reported significantly more depressive symptoms than the overestimation group (β = .43 to .44, p < .05). No significant difference between the accurate estimation and overestimation group was found (p > .05). An association between awareness and treatment motivation was not statistically confirmed. CONCLUSION This study demonstrated that when considering awareness groups, more nuanced results arise than when only considering discrepancy scores. From a clinical and scientific standpoint, it is important to distinguish awareness groups in addition to considering mean discrepancy scores.

Further validation of the Motivation for Traumatic Brain Injury Rehabilitation Questionnaire (MOT-Q) in patients with acquired brain injury

The Motivation for Traumatic Brain Injury Rehabilitation Questionnaire (MOT-Q) evaluates motivation for rehabilitation in four subscales: Interest in rehabilitation, Lack of anger, Lack of denial, and Reliance on professional help. The objective of this study was to further validate the MOT-Q in 122 inpatients and 92 outpatients with acquired brain injury (ABI). The main measures were motivation for rehabilitation (MOT-Q), self-awareness (Patient Competency Rating Scale), and treatment motivation (Visual Analogue Scale). The MOT-Q showed adequate feasibility in terms of few items with missing responses and few undecided responses. We found no floor or ceiling effects, and significant item-total MOT-Q correlations for 29 of 31 items. Internal consistency was good for the MOT-Q total and acceptable to good for the subscales. The MOT-Q scores were significantly intercorrelated except for the subscales Lack of denial and Reliance on professional help in the inpatient group. The MOT-Q total and subscales were significantly associated with treatment motivation. The Lack of denial subscale showed no significant association with treatment motivation and no to moderate significant associations with self-awareness. In conclusion, the overall MOT-Q is a valid instrument to assess motivation for rehabilitation in patients with ABI. Further research is needed to examine the validity of the subscales.

Changes in impaired self-awareness after acquired brain injury in patients following intensive neuropsychological rehabilitation

The objective of this study was to investigate changes in self-awareness impairments in outpatients with acquired brain injury (ABI) and the effects these changes have on rehabilitation. Participants were 78 patients with ABI (8.3 years post-injury) who followed an intensive outpatient neuropsychological rehabilitation programme. This longitudinal study comprised pre (T1) and post (T2) measurements and a one-year follow-up (T3). Thirty-eight patients completed the study. The main outcome domains were self-awareness, depressive symptoms, psychological and physical dysfunction, and health-related quality of life (HRQoL). Patients were divided into three awareness groups: underestimation, accurate estimation, and overestimation of competencies. Most patients who underestimated their competencies at the start of treatment accurately estimated their competencies directly after treatment (9 out of 11 patients). These patients also exhibited the largest treatment effects regarding depressive symptoms, psychological and physical dysfunction, and HRQoL. Most patients with impaired self-awareness (i.e., overestimation of competencies) at the start of treatment continued to overestimate their competencies after treatment (10 out of 14 patients). These patients exhibited a significant decrease in depressive symptoms but no other treatment effects. The results indicate that changes in outcome are related to changes in awareness, which underline the importance of taking into account different awareness groups with respect to treatment effects.

Outcomes of a community-based treatment programme for people with acquired brain injury in the chronic phase: a pilot study

ABSTRACT The objective of the study was to evaluate the outcomes of Brainz, a low intensity community-based treatment programme for people with acquired brain injury (ABI). Participants were 62 people with sustained ABI (5.2 years post-injury, SD = 4.5) and 35 family caregivers. Participants attended two to five cognitive and physical group modules and received two hours of individual home treatment every two weeks. Primary outcomes for people with ABI were participation, perceived difficulties in daily life and need of care, level of goal attainment, and self-esteem. Primary family caregiver outcome was perceived burden of care. Attrition rate of people with ABI was 24% (n = 15), and of family caregivers was 31% (n = 11). People with ABI were more satisfied with the level of their participation after completing Brainz (p < .01), but showed no change in participation frequency or in restrictions (both ps > .01). They perceived fewer difficulties in daily life and less need of care (both ps < .01). Also, in two cognitive modules people improved on their goal achievement (p < .01). However, their self-esteem was reduced (p < .01). Caregiver burden was reduced (p < .01). This study has provided preliminary evidence of the effectiveness of a combined group-based clinical and individual home-based treatment programme, but more research is needed, preferably in larger controlled studies.