A longitudinal follow-up study of parent-reported family impact and quality of life in young patients with traumatic and non-traumatic brain injury.

PURPOSE: Brain injuries (traumatic-/nontraumatic, TBI/nTBI) in young patients may lead to problems e.g., decreased health-related quality of life (HRQoL), and causes family impact. Knowledge regarding the family impact and the relationship with patients' HRQoL over time is scarce. This follow-up study describes family impact/HRQoL and their mutual relationship in young patients (5-24 years) after TBI/nTBI. MATERIALS AND METHODS: Parents of patients that were referred to outpatient rehabilitation completed the PedsQL™Family-Impact-Module questionnaire to assess the family impact and the parent-reported PedsQL™Generic-core-set-4.0 to assess patients' HRQoL (lower scores: more family impact/worse HRQoL). Questionnaires were completed at the time of referral to rehabilitation (baseline) and one/two years later (T1/T2). Linear-mixed models were used to examine family impact/HRQoL change scores, and repeated-measure correlations (r) to determine longitudinal relationships. RESULTS: Two-hundred-forty-six parents participated at baseline, 72 (at T2), median patient's age at baseline was 14 years (IQR:11-16), and 181 (74%) had TBI. Mean (SD) PedsQL™Family-Impact-Module score at baseline was 71.7 (SD:16.4) and PedsQL™Generic-core-set-4.0: 61.4 (SD:17.0). Over time, PedsQL™Family-Impact-Module scores remained stable, while PedsQL™Generic-core-set-4.0 scores improved significantly(p < 0.05). A moderately strong longitudinal correlation was found between family impact&HRQoL (r = 0.51). CONCLUSIONS: Family impact does not tend to decrease over time but remained a considerable problem, although patients' HRQoL improved. Next to focusing on patients' HRQoL, it remains important to consider family impact and offer family support throughout rehabilitation.IMPLICATIONS FOR REHABILITATIONThis longitudinal study found that in young patients with traumatic brain injury (TBI) or non-traumatic brain injury (nTBI) referred for rehabilitation there is a considerable impact on the family until two years after referral, whereas the patients' health-related quality of life (HRQoL) improved significantly.Improvements in patients' quality of life status may not automatically lead to a decrease of family impact.Rehabilitation clinicians should monitor the impact on the family over time and provide long-term family support with special attention to parental worrying when needed.Clinicians should be aware that, despite significant differences between the clinical characteristics of patients with TBI and nTBI, the courses of family impact are very similar.

Parent-reported family impact in children and young adults with acquired brain injury in the outpatient rehabilitation setting.

Purpose: To increase knowledge/awareness on family impact (FI) after acquired brain injury (ABI) in rehabilitation settings, it is essential to investigate the associations between patient-functioning and impact on families. This has been explored in hospital-based cohorts, but not in rehabilitation settings.Methods: A cross-sectional, multi-center study among parents of children/young adults (aged 5-24 years) with ABI referred to rehabilitation was performed. Patient/injury/family-characteristics were noted, and parents completed the PedsQL™Family-Impact-Module and PedsQL™generic-core-4.0 to assess FI and health-related quality of life (HRQoL). Univariate- and multivariable-regression analyses were performed to investigate associations between HRQoL/patient/injury/family-related factors and FI.Results: 246 families participated; patients' median age was 14 year (IQR 11-16), 65 had non-traumatic-brain-injury (nTBI) (26%), 127 were female. FI was found to be considerable (median FIM-score 71.9, IQR:60-85). Especially referral to rehabilitation >6 months after onset, diminished patients' mental/emotional health and HRQoL (child/family factors), and premorbid problems were associated with higher FI.Conclusions: In this rehabilitation cohort, pediatric ABI caused considerably higher FI than in hospital-based studies with referral to rehabilitation >6 months, diminished child/family factors and presence of premorbid problems increasing FI. Assessing and monitoring FI and its associated factors enables professionals to individualize treatment, psychoeducation, support and follow-up.

Teachers' and students' perceptions on barriers and facilitators for eHealth education in the curriculum of functional exercise and physical therapy: a focus groups study.

BACKGROUND: Despite the growing importance of eHealth it is not consistently embedded in the curricula of functional exercise and physical therapy education. Insight in barriers and facilitators for embedding eHealth in education is required for the development of tailored strategies to implement eHealth in curricula. This study aims to identify barriers/facilitators perceived by teachers and students of functional exercise/physical therapy for uptake of eHealth in education. METHODS: A qualitative study including six focus groups (two with teachers/four with students) was conducted to identify barriers/facilitators. Focus groups were audiotaped and transcribed in full. Reported barriers and facilitators were identified, grouped and classified using a generally accepted framework for implementation including the following categories: innovation, individual teacher/student, social context, organizational context and political and economic factors. RESULTS: Teachers (n = 11) and students (n = 24) of functional exercise/physical therapy faculties of two universities of applied sciences in the Netherlands participated in the focus groups. A total of 109 barriers/facilitators were identified during the focus groups. Most related to the Innovation category (n = 26), followed by the individual teacher (n = 22) and the organization (n = 20). Teachers and students identified similar barriers/facilitators for uptake of eHealth in curricula: e.g. unclear concept of eHealth, lack of quality and evidence for eHealth, (lack of) capabilities of students/teachers on how to use eHealth, negative/positive attitude of students/teachers towards eHealth. CONCLUSION: The successful uptake of eHealth in the curriculum of functional exercise/physical therapists needs a systematic multi-facetted approach considering the barriers and facilitators for uptake identified from the perspective of teachers and students. A relatively large amount of the identified barriers and facilitators were overlapping between teachers and students. Starting points for developing effective implementation strategies can potentially be found in those overlapping barriers and facilitators. REGISTRATION: The study protocol was a non-medical research and no registration was required. Participants gave written informed consent.

Why the uptake of eRehabilitation programs in stroke care is so difficult-a focus group study in the Netherlands.

BACKGROUND: The uptake of eRehabilitation programs in stroke care is insufficient, despite the growing availability. The aim of this study was to explore which factors influence the uptake of eRehabilitation in stroke rehabilitation, among stroke patients, informal caregivers, and healthcare professionals. METHODS: A qualitative focus group study with eight focus groups (6-8 participants per group) was conducted: six with stroke patients/informal caregivers and two with healthcare professionals involved in stroke rehabilitation (rehabilitation physicians, physical therapists, occupational therapists, psychologists, managers). Focus group interviews were audiotaped, transcribed in full, and analyzed by direct content analysis using the implementation model of Grol. RESULTS: Thirty-two patients, 15 informal caregivers, and 13 healthcare professionals were included. A total of 14 influencing factors were found, grouped to 5 of the 6 levels of the implementation model of Grol (Innovation, Organizational context, Individual patient, Individual professional, and Economic and political context). Most quotes of patients, informal caregivers, and healthcare professionals were classified to factors at the level of the Innovation (e.g., content, attractiveness, and feasibility of eRehabilitation programs). In addition, for patients, relatively many quotes were classified to factors at the level of the individual patient (e.g., patients characteristics as fatigue and the inability to understand ICT-devices), and for healthcare professionals at the level of the organizational context (e.g., having sufficient time and the fit with existing processes of care). CONCLUSION: Although there was a considerable overlap in reported factors between patients/informal caregivers and healthcare professionals when it concerns eRehabilitation as innovation, its seems that patients/informal caregivers give more emphasis to factors related to the individual patient, whereas healthcare professionals emphasize the importance of factors related to the organizational context. This difference should be considered when developing an implementation strategy for patients and healthcare professionals separately.

Adherence of stroke patients with an online brain training program: the role of health professionals' support.

Background Computer-based cognitive rehabilitation is used to improve cognitive functioning after stroke. However, knowledge on adherence rates of stroke patients is limited. Objective To describe stroke patients' adherence with a brain training program using two frequencies of health professionals' supervision. Methods This study is part of a randomized controlled trial comparing the effect of the brain training program (600 min playtime with weekly supervision) with a passive intervention in patients with self-perceived cognitive impairments after stroke. Patients randomized to the control condition were offered the brain training after the trial and received supervision twice (vs weekly in intervention group). Adherence was determined using data from the study website. Logistic regression analyses were used to examine the impact of supervision on adherence. Results 53 patients allocated to the intervention group (group S8; 64% male, mean age 59) and 52 patients who were offered the intervention after the trial (group S2; 59% male, mean age 59) started the brain training. The median playtime was 562 min (range 63-1264) in group S8 vs. 193 min (range 27-2162) in group S2 (p < 0.001, Mann Whitney U). Conclusions The overall adherence of stroke patients with a brain training was low and there are some implications that systematic, regular interaction with a supervisor can increase training adherence of stroke patients with a restitution-focused intervention performed at home.

The patient perspective on the use of information and communication technologies and e-health in rehabilitation.

INTRODUCTION: Success of e-health relies on the extent to which the related technology, such as the electronic device, is accepted by its users. However, there has been limited research on the patients' perspective on use of e-health-related technology in rehabilitation care. OBJECTIVE: To explore the usage of common electronic devices among rehabilitation patients with access to email and investigate their preferences regarding their usage in rehabilitation. METHODS: Adult patients who were admitted for inpatient and/or outpatient rehabilitation and were registered with an email address were invited to complete an electronic questionnaire regarding current and preferred use of information and communication technologies in rehabilitation care. RESULTS: 190 out of 714 invited patients completed the questionnaire, 94 (49%) female, mean age 49 years (SD 16). 149 patients (78%) used one or more devices every day, with the most frequently used devices were: PC/laptop (93%), smartphone (57%) and tablet (47%). Patients mostly preferred to use technology for contact with health professionals (mean 3.15, SD 0.79), followed by access to their personal record (mean 3.09, SD 0.78) and scheduling appointments with health professionals (mean 3.07, SD 0.85). CONCLUSION: Most patients in rehabilitation used one or more devices almost every day and wish to use these devices in rehabilitation. Implications for Rehabilitation In a sample of 190 patients in rehabilitation with access to email, almost all patients used one or more electronic devices almost every day of the week, with the most frequently used devices were: a PC/laptop, smartphone and tablet. Most of the patients wish to incorporate electronic devices in their rehabilitation process and prefer to use those devices to have insight in their health record, communication with peers and scheduling appointments with health professionals. To better assist patients with e-health in rehabilitation care in the future, preferences could be implemented in rehabilitation care by using the most commonly used devices.

Cognitive function and participation in children and youth with mild traumatic brain injury two years after injury.

BACKGROUND: 10-20% of children and youth with mild traumatic brain injury (mTBI) suffer from long-term cognitive impairments with, supposedly, a negative impact on most domains of functioning. OBJECTIVES: To describe cognitive functioning and participation in children and youth two-years post-mTBI and to determine associated risk factors. METHODS: Cross-sectional study among 73 patients (aged 6-22 years), hospital diagnosed with mTBI. Linear regression modelling was used to investigate the effect of potential predictors on cognitive functioning as measured with a neuropsychological assessment (NPA), two-years post-injury. Extent of participation was assessed using the Child and Adolescent Scale of Participation and correlation analysis was conducted to examine its association with level of cognitive functioning. RESULTS: 7-15% of all participants had impaired cognitive functions, especially in the domains of processing speed, inhibitory control, cognitive flexibility, visuospatial constructional ability and visuospatial memory. Lower level of education and pre-injury cognitive problems were predictive for a lower level of long-term cognitive functioning. Slower inhibition speed, impaired visuospatial and verbal working memory were associated with reduced participation. DISCUSSION AND CONCLUSIONS: Persisting cognitive problems two years after mTBI were mostly related to the lower level of education and to pre-injury cognitive problems. Although participation of the patients was reported by parents to be relatively high, slower inhibition speed, impaired visuospatial and verbal working memory were associated with reduced participation.

Factors related to fatigue after paediatric acquired brain injury (ABI).

OBJECTIVE: To assess the degree of fatigue in children and youth after traumatic and non-traumatic brain injury (TBI and NTBI) and related factors. METHOD: Follow-up study including patients with a hospital-based diagnosis of acquired brain injury (ABI), aged 4-20 years at onset and their parents. Parents and children (dependent on age) completed the Paediatric Quality of Life Inventory™ Multidimensional Fatigue Scale (PedsQL™ MFS), which measures general fatigue (GF), sleep/rest fatigue (SRF) and cognitive fatigue (CF). Additional assessments included the Child & Family Follow-up Survey (CFFS) and PedsQL™ 4.0 General Core Scales and sociodemographic and disease characteristics. RESULTS: Eighty-eight parents completed the PedsQL™ MFS 24-30 months after diagnosis, with 49/88 patients (56%) completing the child version. The median age of the patients was 11 years (interquartile range [IQR] = 7). There were 69 patients with TBI (16% moderate/severe TBI) and 19 patients with NTBI (16% moderate/severe NTBI). The median parent-reported and child-reported PedsQL™ MFS Total Scale Scores were 76.5 (SD = 16.4) and 78.5 (12.9), respectively (Spearman r = 0.450, p = 0.001). Apart from NTBI, increasing age and a single-parent household were significantly associated with more fatigue according to the parent-reported PedsQL™ MFS Total Score (and/or one or more sub-scale scores). CONCLUSION: Two years after onset, in particular, the parent-reported fatigue after NTBI was considerable. Moreover, older children and children from a single-parent household were found to have higher fatigue levels.

The effects of an 8-week computer-based brain training programme on cognitive functioning, QoL and self-efficacy after stroke.

Cognitive impairment after stroke has a direct impact on daily functioning and quality of life (QoL) of patients and is associated with higher mortality and healthcare costs. The aim of this study was to determine the effect of a computer-based brain training programme on cognitive functioning, QoL and self-efficacy compared to a control condition in stroke patients. Stroke patients with self-perceived cognitive impairment were randomly allocated to the intervention or control group. The intervention consisted of an 8-week brain training programme (Lumosity Inc.®). The control group received general information about the brain weekly. Assessments consisted of a set of neuropsychological tests and questionnaires. In addition, adherence with trained computer tasks was recorded. No effect of the training was found on cognitive functioning, QoL or self-efficacy when compared to the control condition, except for very limited effects on working memory and speed. This study found very limited effects on neuropsychological tests that were closely related to trained computer tasks, but no transfers to other tests or self-perceived cognitive failures, QoL or self-efficacy. These findings warrant the need for further research into the value of computer-based brain training to improve cognitive functioning in the chronic phase after stroke.

Youth with acquired brain injury in The Netherlands: a multi-centre study.

UNLABELLED: Abstract Aim: To describe the occurrence and causes of acquired brain injury (ABI), including traumatic brain injury (TBI) and non-traumatic brain injury (NTBI), among Dutch youth and estimate incidence rates from the data. PATIENTS: Aged 1 month-24 years, hospital diagnosed with ABI in 2008 or 2009. METHODS: In three major hospitals in the southwest region of the Netherlands patients with ABI were retrospectively identified by means of diagnosis codes and specific search terms. RESULTS: One thousand eight hundred and ninety-two patients were included: 1476 with TBI and 416 with NTBI. Causes of TBI and NTBI varied among the age groups 0-4, 5-14 and 15-24 years, with accidents (in traffic or at home) being the most common cause of TBI and hypoxic-ischemic events for NTBI, in all groups. The estimated yearly incidence rates per 100 000 for mild-moderate-severe TBI were 271.2-15.4-2.3 (0-14 years) and 261.6-27.0-7.9 (15-24 years), for mild-moderate-severe NTBI they were 95.7-11.8-1.3 (0-14 years) and 73.8-6.1-1.6 (15-24 years), respectively. CONCLUSION: More than 15% of TBI and NTBI in children and youth is classified as moderate or severe, with causes of TBI and NTBI varying among age groups. Based on the occurrence of ABI in three hospitals, the estimated incidence of ABI in children and youth in the southwest region of the Netherlands is substantial.

Gaming supports youth with acquired brain injury? A pilot study.

AIM: To explore the effects of usage of the Nintendo Wii on physical, cognitive and social functioning in patients with acquired brain injury (ABI). METHODS: This multi-centre, observational proof-of-concept study included children, adolescents and young adults with ABI aged 6-29 years. A standardized, yet individually tailored 12-week intervention with the Nintendo Wii was delivered by trained instructors. The treatment goals were set on an individual basis and included targets regarding physical, mental and/or social functioning. Outcome assessments were done at baseline and after 12 weeks and included: the average number of minutes per week of recreational physical activity; the CAPE (Children's Assessment of Participation and Enjoyment); the ANT (Amsterdam Neuropsychological Tasks); the achievement of individual treatment goals (Goal Attainment Scaling); and quality-of-life (PedsQL; Pediatric Quality of Life Inventory). Statistical analyses included paired t-tests or Wilcoxon-Signed-Rank tests. RESULTS: Fifty patients were included (31 boys and 19 girls; mean age 17.1 years (SD = 4.4)), of whom 45 (90%) completed the study. Significant changes of the amount of physical activity, speed of information processing, attention, response inhibition and visual-motor coordination (p < 0.05) were seen after 12 weeks, whereas there were no differences in CAPE or PedsQL scores. Two-thirds of the patients reported an improvement of the main treatment goal. CONCLUSION: This study supports the potential benefits of gaming in children and youth with ABI.