Wilbert Bakx

Quality of Life after Brain Injury (QOLIBRI): Scale Validity and Correlates of Quality of Life

The QOLIBRI (Quality of Life after Brain Injury) is a novel health-related quality-of-life (HRQoL) instrument specifically developed for traumatic brain injury (TBI). It provides a profile of HRQoL in six domains together with an overall score. Scale validity and factors associated with HRQoL were investigated in a multi-center international study. A total of 795 adults with brain injury were studied from 3 months to 15 years post-injury. The majority of participants (58%) had severe injuries as assessed by 24-h worst Glasgow Coma Scale (GCS) score. Systematic relationships were observed between the QOLIBRI and the Glasgow Outcome Scale-Extended (GOSE), Hospital Anxiety and Depression Scale (HADS), and SF-36. Within each scale patients with disability reported having low HRQoL in two to three times as many areas as those who had made a good recovery. The main correlates of the total QOLIBRI score were emotional state (HADS depression and anxiety), functional status (amount of help needed and outcome on the GOSE), and comorbid health conditions. Together these five variables accounted for 58% of the variance in total QOLIBRI scores. The QOLIBRI is the first tool developed to assess disease-specific HRQoL in brain injury, and it contains novel information not given by other currently available assessments.

Life after survival: long-term daily life functioning and quality of life of patients with hypoxic brain injury as a result of a cardiac arrest

Objectives : To determine the level of daily functioning and quality of life of patients with hypoxic brain injury after a cardiac arrest and to investigate the predictive value of the duration of coma and post-traumatic amnesia in long-term functioning. Design : A retrospective cohort study. Setting : A Dutch rehabilitation centre. Subjects : Thirty-two patients with hypoxic brain injury caused by a cardiac arrest 2—7 years ago, who were admitted to a brain injury rehabilitation programme. Main outcome measures : Cognitive Failures Questionnaire (CFQ), Frenchay Activities Index (FAI), Impact on Participation and Autonomy Questionnaire (IPAQ) and Quality of Life after Brain Injury questionnaire (QOLIBRI). Data on duration of coma and post-traumatic amnesia were retrieved from medical files. Results : A significant association was found between duration of coma, complaints of cognitive functioning (r = 0.57, P < 0.05) and quality of life after brain injury (r = —0.70, P < 0.01). Duration of post-traumatic amnesia was associated with both daily functioning (r = —0.70, P < 0.01) and quality of life (r = —0.70, P < 0.01). Furthermore complaints of cognitive functioning were associated with both the level of participation in society (r = 0.76, P < 0.01) and quality of life (r = 0.77, P < 0.01). Conclusions : Long-term outcome of patients with hypoxic brain injury after a cardiac arrest shows that this group is limited in cognitive and daily functioning, participation and quality of life. Based on the duration of coma and post-traumatic amnesia, an estimation of daily life functioning and quality of life 2—7 years after a cardiac arrest can be made.

QOLIBRI Overall Scale: a brief index of health-related quality of life after traumatic brain injury

Background The Quality of Life after Brain Injury (QOLIBRI) scale is a recently developed instrument that provides a profile of health-related quality of life (HRQoL) in domains typically affected by brain injury. However, for global assessment it is desirable to have a brief summary measure. This study examined a 6-item QOLIBRI Overall Scale (QOLIBRI-OS), and considered whether it could provide an index of HRQoL after traumatic brain injury (TBI). Methods The properties of the QOLIBRI-OS were studied in a sample of 792 participants with TBI recruited from centres in nine countries covering six languages. An examination of construct validity was undertaken on a subsample of 153 participants recruited in Germany who had been assessed on two relevant brief quality of life measures, the Satisfaction With Life Scale and the Quality of Life Visual Analogue Scale. Results The reliability of the QOLIBRI-OS was good (Cronbachs α=0.86, test–retest reliability =0.81) and similar in participants with higher and lower cognitive performance. Factor analysis indicated that the scale is unidimensional. Rasch analysis also showed a satisfactory fit with this model. The QOLIBRI-OS correlates highly with the total score from the full QOLIBRI scale (r=0.87). Moderate to strong relationships were found among the QOLIBRI-OS and the Extended Glasgow Outcome Scale, Short-Form-36, and Hospital Anxiety and Depression scale (r=0.54 to -0.76). The QOLIBRI-OS showed good construct validity in the TBI group. Conclusions The QOLIBRI-OS assesses a similar construct to the QOLIBRI total score and can be used as a brief index of HRQoL for TBI.

Activity and Life After Survival of a Cardiac Arrest (ALASCA) and the effectiveness of an early intervention service: design of a randomised controlled trial

BackgroundCardiac arrest survivors may experience hypoxic brain injury that results in cognitive impairments which frequently remain unrecognised. This may lead to limitations in daily activities and participation in society, a decreased quality of life for the patient, and a high strain for the caregiver. Publications about interventions directed at improving quality of life after survival of a cardiac arrest are scarce. Therefore, evidence about effective rehabilitation programmes for cardiac arrest survivors is urgently needed. This paper presents the design of the ALASCA (Activity and Life After Survival of a Cardiac Arrest) trial, a randomised, controlled clinical trial to evaluate the effects of a new early intervention service for survivors of a cardiac arrest and their caregivers.Methods/designThe study population comprises all people who survive two weeks after a cardiac arrest and are admitted to one of the participating hospitals in the Southern part of the Netherlands. In a two-group randomised, controlled clinical trial, half of the participants will receive an early intervention service.The early intervention service consists of several consultations with a specialised nurse for the patient and their caregiver during the first three months after the cardiac arrest. The intervention is directed at screening for cognitive problems, provision of informational, emotional and practical support, and stimulating self-management. If necessary, referral to specialised care can take place. Persons in the control group will receive the care as usual.The primary outcome measures are the extent of participation in society and quality of life of the patient one year after a cardiac arrest. Secondary outcome measures are the level of cognitive, emotional and cardiovascular impairment and daily functioning of the patient, as well as the strain for and quality of life of the caregiver. Participants and their caregivers will be followed for twelve months after the cardiac arrest.A process evaluation will be performed to gain insight into factors that might have contributed to the effectiveness of the intervention and to gather information about the feasibility of the programme. Furthermore, an economic evaluation will be carried out to determine the cost-effectiveness and cost-utility of the intervention.DiscussionThe results of this study will provide evidence on the effectiveness of this early intervention service, as well as the cost-effectiveness and its feasibility.Trial registrationCurrent Controlled Trials [ISRCTN74835019]

‘Stand still … , and move on’, a new early intervention service for cardiac arrest survivors and their caregivers: rationale and description of the intervention

This series of articles for rehabilitation in practice aims to cover a knowledge element of the rehabilitation medicine curriculum. Nevertheless they are intended to be of interest to a multidisciplinary audience. The competency addressed in this article is ‘The trainee demonstrates a knowledge of diagnostic approaches for specific impairments including cognitive dysfunction as a result of cardiac arrest.’ Abstract Objective: To describe a new early intervention service for survivors of cardiac arrest and their caregivers, and to explain the evidence and rationale behind it. Rationale: A cardiac arrest may cause hypoxic–ischaemic brain injury, which often results in cognitive impairments. Survivors of cardiac arrest can also encounter emotional problems, limitations in daily life, reduced participation in society and a decreased quality of life. A new early intervention service was designed based on literature study, expert opinion and patient experiences. Description of the intervention: The early intervention service is an individualized programme, consisting of one to six consultations by a specialized nurse for the patient and their caregiver. The intervention starts soon after discharge from the hospital and can last up to three months. The intervention consists of screening for cognitive and emotional problems, provision of information and support, promotion of self-management strategies and can include referral to further specialized care if indicated. Discussion: This intervention is assumed to reduce future problems related to hypoxic–ischaemic brain injury in the patient and caregiver, and its effectiveness is currently being investigated in a randomized controlled multicentre trial.

Effectiveness of a low intensity outpatient cognitive rehabilitation programme for patients in the chronic phase after acquired brain injury

The aim of this prospective cohort study was to examine the effectiveness of a low intensity outpatient cognitive rehabilitation programme for patients with acquired brain injury in the chronic phase. Twenty-seven patients with acquired brain injury (i.e., stroke, traumatic brain injury, subarachnoid haemorrhage; 52% male) with a mean age of 49.5 (SD 9.2) years and 25 relatives with a mean age of 48.8 (SD 8.8) years were recruited to the study. Mean time since injury in the patient group was 1.9 years (SD 2.0). The group programme consisted of 15 weekly sessions of 2.5 hours and included cognitive strategy training, social skills training, and psycho-education. Patients also received homework. Relatives were invited to attend twice. Repeated measurements were taken: prior to treatment (baseline, T0); directly after treatment (T1, 21 weeks); and at follow-up (T2, 45 weeks). Primary outcome measures were individualised goals (GAS), cognitive failures (CFQ), and quality of life (SA-SIP). Patients did improve significantly on individual goals (p < .05) between T0 and T1 and the level of attainment remained stable between T1 and T2. Goals were mostly set in the cognitive and behavioural domains. There were no significant differences between the measurements (T0–T1–T2) on the CFQ and the SA-SIP. The programme had a positive effect on the individual goals set by the patients. However, this did not result in a higher participation level or a better quality of life. This may be due to the low intensity and short duration of the programme.

Accelerometry Measuring the Outcome of Robot-Supported Upper Limb Training in Chronic Stroke: A Randomized Controlled Trial

Purpose This study aims to assess the extent to which accelerometers can be used to determine the effect of robot-supported task-oriented arm-hand training, relative to task-oriented arm-hand training alone, on the actual amount of arm-hand use of chronic stroke patients in their home situation. Methods This single-blind randomized controlled trial included 16 chronic stroke patients, randomly allocated using blocked randomization (n = 2) to receive task-oriented robot-supported arm-hand training or task-oriented (unsupported) arm-hand training. Training lasted 8 weeks, 4 times/week, 2×30 min/day using the (T-)TOAT ((Technology-supported)-Task-Oriented-Arm-Training) method. The actual amount of arm-hand use, was assessed at baseline, after 8 weeks training and 6 months after training cessation. Duration of use and intensity of use of the affected arm-hand during unimanual and bimanual activities were calculated. Results Duration and intensity of use of the affected arm-hand did not change significantly during and after training, with or without robot-support (i.e. duration of use of unimanual use of the affected arm-hand: median difference of −0.17% in the robot-group and −0.08% in the control group between baseline and after training cessation; intensity of the affected arm-hand: median difference of 3.95% in the robot-group and 3.32% in the control group between baseline and after training cessation). No significant between-group differences were found. Conclusions Accelerometer data did not show significant changes in actual amount of arm-hand use after task-oriented training, with or without robot-support. Next to the amount of use, discrimination between activities performed and information about quality of use of the affected arm-hand are essential to determine actual arm-hand performance. Trial Registration Controlled-trials.com ISRCTN82787126

Life after survival

Endogenous free radical production by NADPH oxidase 2 contributes to the secondary injury cascade after traumatic brain injury in miceAccepted Abstracts from the International Brain Injury Association’s Ninth World Congress on Brain InjuryObjectives: Studies have shown that occupational therapy interventions for clients with cognitive impairment following acquired brain injury (CIABI) have a positive effect on performance of activities of daily living, although the exact nature of the interventions are not clearly described. A better understanding of current practice is therefore needed to move further in the search for evidence based occupational therapy for clients with CIABI. Research on occupational therapists’ (OTs’) practice can play an important role to explore and describe current practice and furthermore define and evaluate the effectiveness of different components in OT interventions. The aim of this study was to survey Swedish OTs’ practice patterns for clients having CIABI.Methods: The study had a cross-sectional design using a questionnaire developed in two former studies. A stratified random sample was done with 250 OTs each from the following areas: regional care, somatic county care, primary care and municipal eldercare. The questionnaire was sent out using on-line survey software and 462 participants responded. Data is currently analyzed by descriptive and comparative statistics.Results: Preliminary results show that the interventions targeted a wide range of cognitive impairments and its consequences. Interventions were both remedial and compensatory with graded activity as the most common remediating intervention. To compensate for activity limitations prescription, or recommendation, of assistive devices (AD) as well as supporting clients in finding internal strategies were used extensively. The ADs used consisted of both high and low technology devices. Eighty-two percent also included different specific interventions to improve clients’ decreased self-awareness in their practice. A vast majority of the OTs (94%) preferred to use observations in daily activities to assess both activity limitations and cognitive impairment. Almost all participants also used interviews and sixty-two percent used tests on impairment level. To support practice general Occupational Therapy models were widely used while theories focusing on cognitive impairments specifically were used less. The participants’ answers reflected a client-centered attitude with collaborative goal-setting and feedback discussions after each session. Eighty- four percent felt dependent on relatives to reach a successful outcome and most of them worked deliberately to involve relatives in the rehabilitation. The OTs responses were evenly distributed over the spheres of activity. Ninety-two percent of the participants worked in team and the most common diagnoses were stroke and traumatic brain injury. There were some differences in responses between the spheres.Conclusions: Preliminary conclusions are that the OTs practice patterns included interventions targeting most cognitive impairments and their consequences in daily activities. The use of daily activities as a mean was preferred irrespective of whether the interventions were remediative or compensatory. Interventions targeting decreased self-awareness as well as the use of ADs were common. A client-centered approach was dominating including collaboration with relatives.For personalcentered approach was dominating including collaborationwith relatives.Diagnosis of Disorders of Consciousness : Evoked Potentials and Behavioural Assessment in clinical practice

Life after survival : Long-term daily functioning and quality of life of patients after an outof-hospital cardiac arrest

Endogenous free radical production by NADPH oxidase 2 contributes to the secondary injury cascade after traumatic brain injury in miceAccepted Abstracts from the International Brain Injury Association’s Ninth World Congress on Brain InjuryObjectives: Studies have shown that occupational therapy interventions for clients with cognitive impairment following acquired brain injury (CIABI) have a positive effect on performance of activities of daily living, although the exact nature of the interventions are not clearly described. A better understanding of current practice is therefore needed to move further in the search for evidence based occupational therapy for clients with CIABI. Research on occupational therapists’ (OTs’) practice can play an important role to explore and describe current practice and furthermore define and evaluate the effectiveness of different components in OT interventions. The aim of this study was to survey Swedish OTs’ practice patterns for clients having CIABI.Methods: The study had a cross-sectional design using a questionnaire developed in two former studies. A stratified random sample was done with 250 OTs each from the following areas: regional care, somatic county care, primary care and municipal eldercare. The questionnaire was sent out using on-line survey software and 462 participants responded. Data is currently analyzed by descriptive and comparative statistics.Results: Preliminary results show that the interventions targeted a wide range of cognitive impairments and its consequences. Interventions were both remedial and compensatory with graded activity as the most common remediating intervention. To compensate for activity limitations prescription, or recommendation, of assistive devices (AD) as well as supporting clients in finding internal strategies were used extensively. The ADs used consisted of both high and low technology devices. Eighty-two percent also included different specific interventions to improve clients’ decreased self-awareness in their practice. A vast majority of the OTs (94%) preferred to use observations in daily activities to assess both activity limitations and cognitive impairment. Almost all participants also used interviews and sixty-two percent used tests on impairment level. To support practice general Occupational Therapy models were widely used while theories focusing on cognitive impairments specifically were used less. The participants’ answers reflected a client-centered attitude with collaborative goal-setting and feedback discussions after each session. Eighty- four percent felt dependent on relatives to reach a successful outcome and most of them worked deliberately to involve relatives in the rehabilitation. The OTs responses were evenly distributed over the spheres of activity. Ninety-two percent of the participants worked in team and the most common diagnoses were stroke and traumatic brain injury. There were some differences in responses between the spheres.Conclusions: Preliminary conclusions are that the OTs practice patterns included interventions targeting most cognitive impairments and their consequences in daily activities. The use of daily activities as a mean was preferred irrespective of whether the interventions were remediative or compensatory. Interventions targeting decreased self-awareness as well as the use of ADs were common. A client-centered approach was dominating including collaboration with relatives.For personalcentered approach was dominating including collaborationwith relatives.Diagnosis of Disorders of Consciousness : Evoked Potentials and Behavioural Assessment in clinical practice