Stroke survivors' long-term participation in paid employment.

BACKGROUND: Knowledge on long-term participation is scarce for patients with paid employment at the time of stroke. OBJECTIVE: Describe the characteristics and the course of participation (paid employment and overall participation) in patients who did and did not remain in paid employment. METHODS: Patients with paid employment at the time of stroke completed questions on work up to 30 months after starting rehabilitation, and the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P, Frequency, Restrictions and Satisfaction scales) up to 24 months. Baseline characteristics of patients with and without paid employment at 30 months were compared using Fisher's Exact Tests and Mann-Whitney U Tests. USER-P scores over time were analysed using Linear Mixed Models. RESULTS: Of the 170 included patients (median age 54.2 interquartile range 11.2 years; 40% women) 50.6% reported paid employment at 30 months. Those returning to work reported at baseline more working hours, better quality of life and communication, were more often self-employed and in an office job. The USER-P scores did not change statistically significantly over time. CONCLUSION: About half of the stroke patients remained in paid employment. Optimizing interventions for returning to work and achieving meaningful participation outside of employment seem desirable.

What works and why in the implementation of eRehabilitation after stroke - a process evaluation.

BACKGROUND: Implementation of an eRehabilitation intervention named Fit After Stroke @Home (Fast@home) - including cognitive/physical exercise applications, activity-tracking, psycho-education - after stroke resulted in health-related improvements. This study investigated what worked and why in the implementation. METHODS: Implementation activities (information provision, integration of Fast@home, instruction and motivation) were performed for 14 months and evaluated, using the Medical Research Council framework for process evaluations which consists of three evaluation domains (implementation, mechanisms of impact and contextual factors). Implementation activities were evaluated by field notes/surveys/user data, it's mechanisms of impact by surveys and contextual factors by field notes/interviews among 11 professionals. Surveys were conducted among 51 professionals and 73 patients. User data (n = 165 patients) were extracted from the eRehabilitation applications. RESULTS: Implementation activities were executed as planned. Of the professionals trained to deliver the intervention (33 of 51), 25 (75.8%) delivered it. Of the 165 patients, 82 (49.7%) were registered for Fast@home, with 54 patient (65.8%) using it. Mechanisms of impact showed that professionals and patients were equally satisfied with implementation activities (median score 7.0 [IQR 6.0-7.75] versus 7.0 [6.0-7.5]), but patients were more satisfied with the intervention (8.0 [IQR 7.0-8.0] versus 5.5 [4.0-7.0]). Guidance by professionals was seen as most impactful for implementation by patients and support of clinical champions and time given for training by professionals. Professionals rated the integration of Fast@home as insufficient. Contextual factors (financial cutbacks and technical setbacks) hampered the implementation. CONCLUSION: Main improvements of the implementation of eRehabilitation are related to professionals' perceptions of the intervention, integration of eRehabilitation and contextual factors.Implication for rehabilitationTo increase the use of eRehabilitation by patients, patients should be supported by their healthcare professional in their first time use and during the rehabilitation process.To increase the use of eRehabilitation by healthcare professionals, healthcare professionals should be (1) supported by a clinical champion and (2) provided with sufficient time for learning to work and getting familiar with the eRehabilitation program.Integration of eRehabilitation in conventional stroke rehabilitation (optimal blended care) is an important challenge and a prerequisite for the implementation of eRehabilitation in the clinical setting.

The outcomes of a vocational rehabilitation and mentorship program in unemployed young adults with acquired brain injury.

BACKGROUND: Persons with disabilities are at risk for unemployment with negative long-term consequences. OBJECTIVE: This study aimed to explore the process and outcomes of a novel vocational rehabilitation (VR) program based on the concept of mentorship. METHODS: Observational, retrospective study including unemployed young adults with acquired brain injury (ABI) taking part in a VR program including assessment, training, individual counselling and mentor support from volunteering professionals. Adherence to the program and work status were registered and at follow-up all patients were invited to complete a general questionnaire and EuroQol 5D. RESULTS: 49 patients started the program, with 41 completing the follow-up. Median age was 31 years and 19 were male. Median duration of the program was 8 months. At follow-up, 9 patients had acquired paid employment, 7 with the support of a mentor; 6 of whom were bothered by health problems at work. Nine patients left the program prematurely, with insufficient financial support for continuation being the primary reason for withdrawal (n = 6). CONCLUSIONS: A VR program including a mentor may be a promising program for patients who are unemployed at onset of ABI. Lack of financial support to complete the program and concurrent health problems were found to hamper the process and outcomes of the program, respectively.

Effect of a comprehensive eRehabilitation intervention alongside conventional stroke rehabilitation on disability and health-related quality of life: A pre-post comparison.

OBJECTIVE: To compare the effect on disability and quality of life, of conventional rehabilitation (control group) with individualized, tailored eRehabilitation intervention alongside conventional rehabilitation (Fast@home; intervention group), for people with stroke. METHODS: Pre-post design. The intervention comprised cognitive (Braingymmer®) and physical (Telerevalidatie®/Physitrack®) exercises, activity-tracking (Activ8®) and psycho-education. Assessments were made at admission (T0) and after 3 (T3) and 6 months (T6). The primary outcome concerned disability (Stroke Impact Scale; SIS). Secondary outcomes were: health-related quality of life, fatigue, self-management, participation and physical activity. Changes in scores between T0-T3, T3-T6, and T0-T6 were compared by analysis of variance and linear mixed models. RESULTS: The study included 153 and 165 people with stroke in the control and intervention groups, respectively. In the intervention group, 82 (50%) people received the intervention, of whom 54 (66%) used it. Between T3 and T6, the change in scores for the SIS subscales Communication (control group/intervention group -1.7/-0.3) and Physical strength (-5.7/3.3) were significantly greater in the total intervention group (all mean differences< minimally clinically important differences). No significant differences were found for other SIS subscales or secondary outcomes, or between T0-T3 and T0-T6. CONCLUSION: eRehabilitation alongside conventional stroke rehabilitation had a small positive effect on communication and physical strength on the longer term, compared to conventional rehabilitation only.

Correction to: Differences in factors influencing the use of eRehabilitation after stroke; a cross-sectional comparison between Brazilian and Dutch healthcare professionals.

An amendment to this paper has been published and can be accessed via the original article.

Differences in factors influencing the use of eRehabilitation after stroke; a cross-sectional comparison between Brazilian and Dutch healthcare professionals.

BACKGROUND: To improve the use of eRehabilitation after stroke, the identification of barriers and facilitators influencing this use in different healthcare contexts around the world is needed. Therefore, this study aims to investigate differences and similarities in factors influencing the use of eRehabilitation after stroke among Brazilian Healthcare Professionals (BHP) and Dutch Healthcare Professionals (DHP). METHOD: A cross-sectional survey study including 88 statements about factors related to the use of eRehabilitation (4-point Likert scale; 1-4; unimportant-important/disagree-agree). The survey was conducted among BHP and DHP (physical therapists, rehabilitating physicians and psychologists). Descriptive statistics were used to analyse differences and similarities in factors influencing the use of eRehabilitation. RESULTS: ninety-nine (response rate 30%) BHP and 105 (response rate 37%) DHP participated. Differences were found in the top-10 most influencing statements between BHP and DHP BHP rated the following factors as most important: sufficient support from the organisation (e.g. the rehabilitation centre) concerning resources and time, and potential benefits of the use of eRehabilitation for the patient. DHP rated the feasibility of the use of eRehabilitation for the patient (e.g. a helpdesk and good instructions) as most important for effective uptake. Top-10 least important statements were mostly similar; both BHP and DHP rated problems caused by stroke (e.g. aphasia or cognitive problems) or problems with resources (e.g. hardware and software) as least important for the uptake of eRehabilitation. CONCLUSION: The results indicate that the use of eRehabilitation after stroke by BHP and DHP is influenced by different factors. A tailored implementation strategy for both countries needs to be developed.

Fatigue, Participation and Quality of Life in Adolescents and Young Adults with Acquired Brain Injury in an Outpatient Rehabilitation Cohort.

PURPOSE: To study the association between fatigue and participation and QoL after acquired brain injury (ABI) in adolescents and young adults (AYAs). MATERIALS & METHODS: Cross-sectional study with AYAs aged 14-25 years, diagnosed with ABI. The PedsQL™ Multidimensional Fatigue Scale, Child & Adolescent Scale of Participation, and PedsQL™4.0 Generic Core Scales were administered. RESULTS: Sixty-four AYAs participated in the study, 47 with traumatic brain injury (TBI). Median age at admission was 17.6 yrs, 0.8 yrs since injury. High levels of fatigue (median 44.4 (IQR 34.7, 59.7)), limited participation (median 82.5 (IQR 68.8, 92.3)), and diminished QoL (median 63.0 (IQR 47.8, 78.3)) were reported. More fatigue was significantly associated with more participation restrictions (ß 0.64, 95%CI 0.44, 0.85) and diminished QoL (ß 0.87, 95%CI 0.72, 1.02). CONCLUSIONS: AYAs with ABI reported high levels of fatigue, limited participation and diminished quality of life with a significant association between fatigue and both participation and QoL. Targeting fatigue in rehabilitation treatment could potentially improve participation and QoL.

Factors associated with willingness to use eRehabilitation after stroke: A cross-sectional study among patients, informal caregivers and healthcare professionals.

OBJECTIVE: Despite the increasing availability of eRehabilitation, its use remains limited. The aim of this study was to assess factors associated with willingness to use eRehabilitation. DESIGN: Cross-sectional survey. SUBJECTS: Stroke patients, informal caregivers, health-care professionals. METHODS: The survey included personal characteristics, willingness to use eRehabilitation (yes/no) and barri-ers/facilitators influencing this willingness (4-point scale). Barriers/facilitators were merged into factors. The association between these factors and willingness to use eRehabilitation was assessed using logistic regression analyses. RESULTS: Overall, 125 patients, 43 informal caregivers and 105 healthcare professionals participated in the study. Willingness to use eRehabilitation was positively influenced by perceived patient benefits (e.g. reduced travel time, increased motivation, better outcomes), among patients (odds ratio (OR) 2.68; 95% confidence interval (95% CI) 1.34-5.33), informal caregivers (OR 8.98; 95% CI 1.70-47.33) and healthcare professionals (OR 6.25; 95% CI 1.17-10.48). Insufficient knowledge decreased willingness to use eRehabilitation among pa-tients (OR 0.36, 95% CI 0.17-0.74). Limitations of the study include low response rates and possible response bias. CONCLUSION: Differences were found between patients/informal caregivers and healthcare professionals. Ho-wever, for both groups, perceived benefits of the use of eRehabilitation facilitated willingness to use eRehabili-tation. Further research is needed to determine the benefits of such programs, and inform all users about the potential benefits, and how to use eRehabilitation.

What is Important in E-health Interventions for Stroke Rehabilitation? A Survey Study among Patients, Informal Caregivers and Health Professionals.

Incorporating user requirements in the design of e-rehabilitation interventions facilitates their implementation. However, insight into requirements for e-rehabilitation after stroke is lacking. This study investigated which user requirements for stroke e-rehabilitation are important to stroke patients, informal caregivers, and health professionals. The methodology consisted of a survey study amongst stroke patients, informal caregivers, and health professionals (physicians, physical therapists and occupational therapists). The survey consisted of statements about requirements regarding accessibility, usability and content of a comprehensive stroke e-health intervention (4-point Likert scale, 1=unimportant/4=important). The mean with standard deviation was the metric used to determine the importance of requirements. Patients (N=125), informal caregivers (N=43), and health professionals (N=105) completed the survey. The mean score of user requirements regarding accessibility, usability and content for stroke e-rehabilitation was 3.1 for patients, 3.4 for informal caregivers and 3.4 for health professionals. Data showed that a large number of user requirements are important and should be incorporated into the design of stroke e-rehabilitation to facilitate their implementation.

Neurological outcome in children and youth with acquired brain injury 2-year post-injury.

OBJECTIVE: To determine neurological outcome in children and youth with acquired brain injury (ABI) and explore associated factors. DESIGN: Cross-sectional study, two-years post-injury. PATIENTS: Hospital-based sample (n=112) aged 6-22 years. METHODS: Neurological outcome and participation were assessed with a multidimensional neurological examination and the Child and Adolescent Scale of Participation. Logistic regression analyses were used to explore the relationships. RESULTS: Both sensorimotor and cognitive deficits were found in 30-31%, language deficits and behavioural deficits in 10-17%. Non-traumatic injury had a negative impact on neurological outcome, specifically regarding sensorimotor and language deficits. Lower education level showed a significantly poorer neurological outcome. High levels of age-expected participation were reported, with a significant relation between deficits and participation restrictions, especially at school. CONCLUSION: One out of three have a poor neurological outcome, related to type of injury and lower level of education. The amount of deficits is associated with participation restrictions.

Activities and participation of children and adolescents after mild traumatic brain injury and the effectiveness of an early intervention (Brains Ahead!): study protocol for a cohort study with a nested randomised controlled trial.

BACKGROUND: Approximately 20 % of children and adolescents who have sustained mild traumatic brain injuries may experience long-term consequences, including cognitive problems, post-traumatic stress symptoms and reduced load-bearing capacity. The underestimation and belated recognition of these long-term consequences may lead to chronic and disruptive problems, such as participation problems in school and in social relationships. The aim of this study is to examine the level of activities and participation of children and adolescents up to 6 months after a mild traumatic brain injury and to identify possible outcome predictors. Another aim is to investigate the effectiveness of an early psychoeducational intervention and compare the results with those obtained with usual care. METHODS/DESIGN: This paper presents the Brains Ahead! study design, a randomised controlled trial nested within a multicentre, longitudinal, prospective cohort study. The eligible participants include children and adolescents between 6 and 18 years of age who have experienced a mild traumatic brain injury within the last 2 weeks. The cohort study will include 500 children and adolescents with a mild traumatic brain injury and their caregivers. A subset of 140 participants and their caregivers will be included in the randomised controlled trial. Participants in the randomised controlled trial will be randomly assigned to either the psychoeducational intervention group or the usual care control group. The psychoeducational intervention involves one face-to-face contact and one phone contact with the interventionist, during which the consequences of mild traumatic brain injury and advice for coping with these consequences to prevent long-term problems will be discussed. Information will be provided both verbally and in a booklet. The primary outcome domain is activities and participation, which will be evaluated using the Child and Adolescent Scale of Participation. Participants are evaluated 2 weeks, 3 months and 6 months after the mild traumatic brain injury. DISCUSSION: The results of this study will provide insight into which children with mild traumatic brain injury are at risk for long-term participation problems and may benefit from a psychoeducational intervention. TRIAL REGISTRATION: Netherlands Trial Register identifier NTR5153 . Registered on 17 Apr 2015.

Health-related quality of life in children and youth with acquired brain injury: Two years after injury.

OBJECTIVE: To determine health-related quality of life (HRQoL) in children and youth with acquired brain injury (ABI) two years post-injury and explore associated factors. DESIGN: Cross-sectional. SUBJECTS: Children and youth (n = 72; aged 6-22 years) with mild to severe ABI (87% mild). METHODS: The primary outcome measures self-reported and parent-reported HRQoL were assessed with the Paediatric Quality of Life Inventory (PedsQL) and compared with age-appropriate reference values of the Dutch population. Spearman correlation coefficients (Rs) were used to explore relationships between HRQoL and sociodemographic and ABI characteristics, severity of impairments and presence of post-injury problems. RESULTS: Children and youth with ABI and the reference population had similar self-reported HRQoL. However, as reported by parents, children with ABI aged 6-7 years and youth aged 13-18 years had poorer HRQoL regarding psychosocial health. Children's post-injury cognitive, behavioural and social problems were moderately associated with poorer HRQoL, especially psychosocial health (Rs ≥ 0.40). Severity nor type of injury were associated with children's HRQoL. CONCLUSION: Two years post-injury, in children and youth with mild to severe ABI, reported HRQoL is similar to that in the general population, whereas parents reported less favourable outcomes. Post-injury cognitive, behavioural and social problems require ongoing attention during long-term follow-up.

Determinants of participation of youth with acquired brain injury: A systematic review.

OBJECTIVES: Participation is considerably restricted in children and adolescents with acquired brain injury (ABI) as compared to their healthy peers. This systematic review aims to identify which factors are associated with participation in children and adolescents with ABI. METHODS: A systematic search in Medline and various other electronic databases from January 2001-November 2014 was performed. All clinical studies describing determinants of participation at least 1 year after the diagnosis of ABI by means of one or more pre-defined instruments in patients up to 18 years of age were included. Extracted data included study characteristics, patient characteristics, participation outcome and determinants of participation (categorized into: health conditions (including characteristics of ABI), body functions and structures, activities, personal factors and environmental factors). The methodological quality of the studies was evaluated based on three quality aspects (selection, information and statistical analysis bias) and scored as low, moderate or high. RESULTS: Eight studies using an explicit participation outcome measure were selected after review, including a total of 1863 patients, with a follow-up ranging from 1 up to 288 months. Three studies included patients with a traumatic or a non-traumatic brain injury (TBI or NTBI) and five studies with only TBI patients. Factors consistently found to be associated with more participation restrictions were: greater severity of ABI, impaired motor, cognitive, behavioural and/or sensory functioning, limited accessibility of the physical environmentand worse family functioning. Fewer participation problems were associated with a supportive/nurturing parenting style, higher household income, acceptance and support in the community and availability of special programmes. The overall methodological quality of the included studies was high in two and moderate in six studies. CONCLUSION: This systematic review shows that only a few, moderate quality, studies on the determinants of participation after paediatric ABI using recommended explicit measurement instruments are available. Various components of the ICF model: health condition, body functions and structures and environmental factors were consistently found to be associated with participation. More methodologically sound studies, using the recommended explicit outcome measures, a standardized set of potential determinants and long-term follow-up are suggested to increase the knowledge on participation in children and youth with ABI.

Family impact of acquired brain injury in children and youth.

OBJECTIVE: To assess the parental view on the impact of pediatric traumatic brain injury (TBI) and nontraumatic brain injury (NTBI) on the family and its determinants. METHODS: Follow-up study including parents of children with a hospital-based diagnosis of acquired brain injury (ABI) aged 4-20 years at onset of ABI. Parents completed the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM), which measures Parent Health-Related Quality of Life, Family Functioning, Communication, and Worry. Additional assessments included the Pediatric Stroke Outcome Measure (PSOM), the Child & Family Follow-up Survey (CFFS), PedsQL General Core and Multiple Fatigue Scales, and sociodemographic and disease characteristics. RESULTS: Parents of 108 patients, median age 13 years (range 5-22), completed the questionnaires 24-30 months after diagnosis. There were 81 patients with TBI of whom 11 (14%) with moderate/severe TBI and 27 patients with NTBI of whom 5 (19%) with moderate/severe NTBI. The median PedsQL FIM Total Scale was 80.4 (SD 16.1). The PedsQL FIM Total Scale and 4 out of 5 Subscale Scores were statistically significantly better in the TBI group than in the NTBI group and in patients with severe NTBI than with mild/moderate NTBI. Moreover, in the total group, there were significant univariate associations between the FIM Total Scale and/or one or more Subscale Scores and age, preinjury patient health problems, and the PSOM, CFFS, PedsQL General Core, and Multiple Fatigue Scales. In the multivariable analysis, the FIM Total Scale was significantly associated with type and severity of injury and preinjury patient health problems. CONCLUSIONS: Two years after onset, the parent-reported that impact of ABI on the family as measured by the PedsQL FIM was considerable especially in patients with moderate/severe NTBI.

Psychometric evaluation of the Dutch language version of the Child and Family Follow-up Survey.

AIM: The Child and Family Follow-up Survey (CFFS) is developed to monitor long-term outcomes of children and youth with acquired brain injury (ABI). The aim of this study was to translate and adapt it into the Dutch language and to evaluate its reliability and validity. METHODS: The CFFS includes the Child and Adolescent Scale of Participation (CASP), the Child and Adolescent Factors Inventory (CAFI) and the Child and Adolescent Scale of Environment (CASE). The CFFS was translated into Dutch following international guidelines and adapted. The internal consistency, validity and test-retest reliability were examined among two groups of patients (n = 140 and n = 27) in the age of 5-22 years with ABI and their parents. RESULTS: The translation and adaptation resulted in the CFFS-DLV, Dutch language version. The CASP-DLV, CAFI-DLV and CASE-DLV had a good internal consistency, with Cronbach's alpha being 0.95, 0.89 and 0.83, respectively. There were statistically significant correlations among the three CFFS subscale scores. These scores were also significantly correlated with the total scores of the Pediatric Quality of Life Inventory (PedsQL, parent) and the Pediatric Stroke Outcome Measure, but not with the domain scores of the Children's Assessment of Participation and Enjoyment (CAPE). The test-retest reliability was good to moderate, with the intra-class correlation coefficients being 0.90 for the CASP-DLV, 0.95 for the CAFI-DLV and 0.81 for the CASE-DLV. CONCLUSIONS: The CFFS-DLV, as translation and adaptation of the CFFS into Dutch, proved to be a promising instrument to measure long-term outcomes of children and youth with ABI. Further research is needed to examine its responsiveness to change and potential in other patient groups.