Development and content validity of the cognition in daily life scale (CDL).

Cognitive impairment can negatively influence daily functioning. Current cognitive measures are essential for diagnosing cognitive impairment, but findings on these tests do not always represent the level of cognitive functioning in daily life. Therefore, this study aimed to design a structured measurement instrument to observe and rate the impact of cognitive impairment in daily life, named the cognition in daily life scale for persons with cognitive problems (CDL). In this paper we describe the development, expected usability, and psychometric properties (content and face validity) of the instrument. The CDL was established through three consecutive development phases: (1) item selection, (2) item categorization and comparison, and (3) item revision and manual construction. Subsequently, a panel of eleven international experts rated the relevance of the selected items and provided comments on the expected usability and face validity. Content validity was estimated with the content validity index, based on which four items were removed. The experts' comments led to minor adjustments of the manual, domains, and formulation of the maintained items. The final instrument consists of 65 items describing behaviour that relies on cognitive functions within six domains. Future research should focus on evaluating the construct validity and reliability of the CDL.

Long-Term Follow-Up of Critically Ill Patients With Traumatic Brain Injury: From Intensive Care Parameters to Patient and Caregiver-Reported Outcome.

Abstract Traumatic brain injury (TBI) is associated with a high social and financial burden due to persisting (severe) disabilities. The consequences of TBI after intensive care unit (ICU) admission are generally measured with global disability screeners such as the Glasgow Outcome Scale-Extended (GOSE), which may lack precision. To improve outcome measurement after brain injury, a comprehensive clinical outcome assessment tool called the Minimal Dataset for Acquired Brain Injury (MDS-ABI) was recently developed. The MDS-ABI covers 12 life domains (demographics, injury characteristics, comorbidity, cognitive functioning, emotional functioning, energy, mobility, self-care, communication, participation, social support, and quality of life), as well as informal caregiver capacity and strain. In this cross-sectional study, we used the MDS-ABI among formerly ICU admitted patients with TBI to explore the relationship between dichotomized severity of TBI and long-term outcome. Our objectives were to: 1) summarize demographics, clinical characteristics, and long-term outcomes of patients and their informal caregivers, and 2) compare differences between long-term outcomes in patients with mild-moderate TBI and severe TBI based on Glasgow Coma Scale (GCS) scores at admission. Participants were former patients of a Dutch university hospital (total n = 52; mild-moderate TBI n = 23; severe TBI n = 29) and their informal caregivers (n = 45). Hospital records were evaluated, and the MDS-ABI was administered during a home visit. On average 3.2 years after their TBI, 62% of the patients were cognitively impaired, 62% reported elevated fatigue, and 69% experienced restrictions in ≥2 participation domains (most frequently work or education and going out). Informal caregivers generally felt competent to provide necessary care (81%), but 31% experienced a disproportionate caregiver burden. All but four patients lived at home independently, often together with their informal caregiver (81%). Although the mild-moderate TBI group and the severe TBI group had significantly different clinical trajectories, there were no persisting differences between the groups for patient or caregiver outcomes at follow-up. As a large proportion of the patients experienced long-lasting consequences beyond global disability or independent living, clinicians should implement a multi-domain outcome set such as the MDS-AB to follow up on their patients.

A cross-sectional comparison of patient characteristics across healthcare settings using the minimal dataset for adults with acquired brain injury (MDS-ABI).

Acquired Brain Injury (ABI) can have lifelong consequences and accordingly, persons with ABI often receive various types of healthcare. Facilities have their own preferences towards measurement instruments used to evaluate patients, impeding data comparison across healthcare settings. In this cross-sectional study, we used the previously developed minimal dataset for persons with ABI (MDS-ABI) to uniformly document and compare characteristics and outcomes of ABI patients in three healthcare settings: (1) residential care (n = 21), (2) non-residential care (n = 80), and (3) no ABI-related care (n = 22). Overall, patients of residential care settings had the lowest functional outcome compared with patients in the remaining groups. Nonetheless, all groups showed substantial disabilities within numerous life domains, indicating that the consequences of ABI are widespread among patients within and outside of healthcare facilities. These results demonstrate the need for a broad measurement of the potential consequences of ABI. The MDS-ABI covers twelve life domains most frequently affected by ABI and therefore helps to better recognize the consequences of ABI. In research contexts, implementation of the MDS-ABI allows for direct comparison of research findings. Future directions should be aimed at further implementation of the MDS-ABI to guide clinical decision-making and assist in identifying treatment goals specific to each healthcare setting.

From word list learning to successful shopping: The neuropsychological assessment continuum from cognitive tests to cognition in everyday life.

Cognitive deficits are common after brain injury and can be measured in various ways. Many neuropsychological tests are designed to measure specific cognitive deficits, and self-report questionnaires capture cognitive complaints. Measuring cognition in daily life is important in rehabilitating the abilities required to undertake daily life activities and participate in society. However, assessment of cognition in daily life is often performed in a non-standardized manner. In this opinion paper we discuss the various types of assessment of cognitive functioning and their associated instruments. Drawing on existing literature and evidence from experts in the field, we propose a framework that includes seven dimensions of cognition measurement, reflecting a continuum ranging from controlled test situations through to measurement of cognition in daily life environments. We recommend multidimensional measurement of cognitive functioning in different categories of the continuum for the purpose of diagnostics, evaluation of cognitive rehabilitation treatment, and assessing capacity after brain injury.

Efficacy and safety of amantadine as a treatment for apathy after brain injury: Two single-case experimental design studies.

Studies on the efficacy of amantadine as a treatment for apathy after brain injury are scarce and of low quality. We examined the efficacy and safety of amantadine for treatment of apathy in two individuals with brain injury.Two double-blind, randomized, single-case experimental (baseline-amantadine-placebo-withdrawal) design (SCED) studies. Apathy measures included a Visual Analogue Scale (VAS), the Neuropsychiatric Inventory (NPI) apathy subscale and the Behavior Rating Inventory of Executive Function for Adults "Initiate" subscale. Safety measures included a rating scale of possible side effects of amantadine and physical examinations.No difference in apathy symptoms (VAS) between baseline and amantadine phase was found in case 1 (NAP = 0.55). Surprisingly, in case 2, apathy symptoms deteriorated from baseline to amantadine phase (NAP = 0.28, 90% CI = -0.69 to -0.20) and improved from amantadine to placebo phase (NAP = 0.92, 90% CI = 0.60-1.00). This improvement was also found on the NPI apathy subscale. Side effects of amantadine were observed in case 2.In this SCED study, amantadine did not improve apathy symptoms in two individuals with brain injury. However, this study shows that side effects of amantadine can occur which lead to a significant decrease in well-being. More high quality studies are required.

Client experiences with holistic neuropsychological rehabilitation: "It is an ongoing process".

The effectiveness of holistic neuropsychological rehabilitation for people with acquired brain injury has previously been demonstrated by means of standardized and routinely administered outcome measures. However, the most important outcomes from the perspective of former clients are largely unknown. This study explored the experience of participating in a holistic neuropsychological rehabilitation programme by conducting three focus groups with twelve former clients who had sustained a brain injury. Data were transcribed verbatim and analysed using thematic analysis. "It is an ongoing process" emerged as the overarching theme for the experience of recovery from brain injury. Four subthemes, or phases, were identified. Participants went through (1) a phase of confrontation, after which they (2) trained their skills and strategies, and (3) experimented with these in daily life. In the end, clients reached a phase of (4) coming to terms with their injury. Participants described increased levels of self-esteem, sense of competence, and adaptation as the most important outcomes of the programme, as these factors helped them regain a sense of identity. The results indicate that including these factors in outcome evaluations of complex interventions after brain injury may be important as they appear essential for capturing the client's perspective on change.

Feasibility of a minimal dataset for adults with acquired brain injury in Dutch healthcare practice.

OBJECTIVE: Data collection in the field of acquired brain injury (ABI) lacks uniformity due to the broad spectrum of available measurement instruments, leading to incomparability of data and the need for patients to 'repeat their story'. To pursue uniform data collection, an ABI-specific minimal dataset (MDS-ABI) is currently under development. The current study aimed to assess the feasibility (performance according to protocol, user opinion, potential implementation barriers, and suggested improvements) of the MDS-ABI in clinical settings. METHODS: A mixed-methods approach was used in a range of healthcare sectors for persons with ABI. Clinicians of several relevant disciplines within these sectors were asked to administer the MDS-ABI to five patients. Subsequently, feasibility according to clinicians was assessed by means of a paper questionnaire about every administration and an online questionnaire about the feasibility in general. Feasibility according to patients was assessed with a paper questionnaire and think aloud interviews. RESULTS: Thirteen clinicians and 50 patients were included. In general, the MDS-ABI performed according to protocol. Both clinicians and patients were overall satisfied with the content of the MDS-ABI. The Cumulative Illness Rating Scale was regarded incomprehensible, leading to missing data. Further, clinicians indicated that the MDS-ABI would not be suitable for all ABI-patients, as some are incapable of self-report due to potential cognitive problems, communicative problems, fatigue, perceptual problems, or impaired awareness of deficits. CONCLUSION: The MDS-ABI is a promising tool for obtaining core information on ABI-patients. The MDS-ABI will be adjusted according to the suggestions. For patients who are incapable of self-report, a proxy-reported version of the self-reported part was developed.

Defining the content of a minimal dataset for acquired brain injury using a Delphi procedure.

BACKGROUND: The lack of consistency in outcome measurement within the field of acquired brain injury (ABI) leads to incomparability of collected data and, consequently, reduced generalisation of findings. We aim to develop a set of standardised measures which can be used to obtain the minimum amount of data necessary to characterise ABI-patients across all healthcare sectors and disciplines and in every stage of recovery; i.e., an ABI-specific minimal dataset (MDS-ABI). The current study was conducted to identify the core outcome domains for adults with ABI (what to measure?) and to select the most suitable measurements within these domains (how to measure it?). METHODS: An initial comprehensive set of outcome domains and measurement instruments relevant for measuring the consequences of ABI was identified by a literature study. The selection of relevant domains was based on the International Classification of Functioning, Disability and Health framework. Measurement instruments were included in the Delphi procedure when they met pre-set requirements. A three-round Delphi study was conducted among Dutch experts (n = 48) using iterative web-based surveys to prioritise the proposed domains and instruments for the MDS-ABI. Throughout all rounds, participants could recommend additional or alternative domains and measurement instruments, and were fed back the collated group responses of the previous round. RESULTS: Response rates ranged from 89 to 100%. After three rounds, the expert panel reached consensus (≥51%) on the inclusion of 12 outcome domains (demographics, injury characteristics, comorbidity, cognitive functioning, emotional functioning, energy, mobility, self-care, communication, participation, social support and quality of life), measured with six measurement instruments, two screening questions and a registry of demographic- and injury information. No consensus was reached on how to measure quality of life. CONCLUSIONS: The current study achieved consensus on the content of a minimal dataset for patients with ABI. The current version of the MDS-ABI will be evaluated and optimised if necessary in the near future.

One-year follow-up results of a community-based treatment programme for people with acquired brain injury in the chronic phase.

Purpose: This study evaluated the long-term effects of Brainz, a community-based treatment programme for adults with acquired brain injury in the chronic phase of the injury.Materials and methods: The treatment consisted of group modules and biweekly individual home training sessions. Of the 62 subjects who participated in the original effect study, 30 subjects were available for follow-up assessment. Selection bias analysis of baseline characteristics revealed no significant differences between the included and the excluded group. Baseline measurements were compared with follow-up measurements to assess effect consolidation after treatment cessation.Results: The increased level of patient satisfaction with social participation found one year after baseline, was maintained at follow-up. The positive effects on the number of perceived difficulties in daily life and need of care that were found one year after baseline measurements were no longer present. However, an additional improvement in self-reported overall health was observed. The decreased level of self-esteem measured one year after baseline, was no longer present at follow-up.Conclusions: Overall, this study suggests consolidation of the effects of this community-based treatment programme. Further enhancement of treatment effects could be established by the implementation of booster sessions or peer support groups. Future controlled studies are needed.Implications for rehabilitationAcquired brain injury can lead to consequences in a variety of life domains that can persist after patients return to their homes.A low-intensity community-based rehabilitation programme called Brainz demonstrated to improve patient satisfaction with societal participation and reduce perceived difficulties in daily life and need of care.This study suggests the consolidation of these effects.