PurposeBrain 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... Show morePurposeBrain 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 methodsParents of patients that were referred to outpatient rehabilitation completed the PedsQL (TM) Family-Impact-Module questionnaire to assess the family impact and the parent-reported PedsQL (TM) 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.ResultsTwo-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 (TM) Family-Impact-Module score at baseline was 71.7 (SD:16.4) and PedsQL (TM) Generic-core-set-4.0: 61.4 (SD:17.0). Over time, PedsQL (TM) Family-Impact-Module scores remained stable, while PedsQL (TM) 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).ConclusionsFamily 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. Show less
Allonsius, F.; Markus-Doornbosch, F. van; Kloet, A.J. de; Lambregts, S.; Vlieland, T.V.; Holst, M. van der 2022
Purpose: Fatigue in patients with acquired brain injury (ABI) is common. However, to better target fatigue, clear ways to categorize/interpret fatigue-severity in individual patients are lacking.... Show morePurpose: Fatigue in patients with acquired brain injury (ABI) is common. However, to better target fatigue, clear ways to categorize/interpret fatigue-severity in individual patients are lacking. This study aims to determine/categorize fatigue severity among children, adolescents, and young adults with ABI. Methods: This cross-sectional study included young patients admitted to outpatient rehabilitation and their parents. To determine fatigue, the PedsQL (TM) Multidimensional-Fatigue-Scale was used (MFS, scores 0-100, lower scores = higher fatigue, patient-/parent-reported). Based on scores from a reference population, four categories were formed: "1 = no/little fatigued" to "4 = severely-more fatigued." Results: All scores were lower than those from the reference population, with comparisons in the adolescent and young adult groups reaching statistical significance (p < .05). The proportions of patients in category 4 were: 9%/50%/58% among children/adolescents/young adults, showing that many patients were "severely-more fatigued"-than the reference population. Conclusions: Measuring fatigue and categorizing fatigue severity looks promising for clinical practice and could help to better target fatigue. Show less
Brouns, B.; Meesters, J.J.L.; Kloet, A.J. de; Vlieland, T.P.M.V.; Houdijk, S.; Arwert, H.J.; Bodegom-Vos, L. van 2022
Background Implementation of an eRehabilitation intervention named Fit After Stroke @Home (Fast@home) - including cognitive/physical exercise applications, activity-tracking, psycho-education -... Show moreBackground 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 rehabilitation To 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. Show less
Markus-Doornbosch, F. van; Meesters, J.J.; Volker, G.; Ijzereef, W.A.; Hout, W.B. van den; Vlieland, T.P.V.; Kloet, A.J. de 2022
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... Show moreBACKGROUND: 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. Show less
Objective: To compare the effect on disability and quality of life, of conventional rehabilitation (control group) with individualized, tailored eRehabilitation intervention alongside conventional... Show moreObjective: 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 (R)) and physical (Telere-validatie (R)/Physitrack (R)) exercises, activity-tracking (Activ8 (R)) 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 qual-ity of life, fatigue, self-management, participation and physical activity. Changes in scores be-tween 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. Show less
Allonsius, F.; Kloet, A.J. de; Markus-Doornbosch, F. van; Meesters, J.J.L.; Kromme, C.H.; Vlieland, T.P.M.V.; Holst, M. van der 2021
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... Show morePurpose: 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 57-<24 years) with ABI referred to rehabilitation was performed. Patient/injury/family-characteristics were noted, and parents completed the PedsQL (TM) Family-Impact-Module and PedsQL (TM) 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 117-<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. Show less
Markus-Doornbosch, F. van; Holst, M. van der; Kloet, A.J. de; Vlieland, T.P.M.V.; Meesters, J.J.L. 2019
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... Show morePurpose: 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 (TM) Multidimensional Fatigue Scale, Child & Adolescent Scale of Participation, and PedsQL (TM) 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 (beta 0.64, 95%CI 0.44, 0.85) and diminished QoL (beta 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. Show less
Brouns, B.; Meesters, J.J.L.; Wentink, M.M.; Kloet, A.J. de; Arwert, H.J.; Boyce, L.W.; ... ; Bodegom-Vos, L. van 2019
The results of the studies included in this thesis suggest that the incidence of ABI in children and youth is considerable. Moreover, it was found that relatively many have long-term health... Show moreThe results of the studies included in this thesis suggest that the incidence of ABI in children and youth is considerable. Moreover, it was found that relatively many have long-term health problems, including limitations in psychosocial functioning, participation and QoL and that the impact on their families is substantial. These findings underscore the need for an increasing awareness for the impact of paediatric ABI. One study explored the effects of usage of serious gaming found that physical activity, the speed of information processing, attention, response inhibition, and parent-perceived Quality of life (QoL) were improved directly after the intervention. Participation is the most relevant outcome of recovery and main goal of rehabilitation. However, a better general understanding and improvements of assessment and treatment are required to decrease the impact of paediatric ABI on participation of youth and their families. Recommendations based on this thesis are: a) implement the ICF-model to improve comprehension of participation (problems) after paediatric ABI; b) measure and monitor participation after paediatric TBI and NTBI and c) develop and evaluate trajectories optimising participation. Show less
