Acquired brain injury (ABI) may cause fatigue and participation restrictions in young patients. However, knowledge regarding the course of these problems over time is lacking. This study aims to... Show moreAcquired brain injury (ABI) may cause fatigue and participation restrictions in young patients. However, knowledge regarding the course of these problems over time is lacking. This study aims to describe the course of fatigue and participation and their relationship over time in an observational two-year follow-up study among patients(5-24 years) with ABI referred for outpatient rehabilitation and their parents. Patients/parents completed the PedsQL (TM) Multidimensional-Fatigue-Scale(PedsQL (TM) MFS, totalscore/3-domains) and the Child/Adolescent-Scale of Participation(CASP, totalscore/4-domains). Scores ranged from 0-100: lower scores = more fatigue/participation problems. Linear mixed models and repeated measures correlations were used to determine the course over time (change-scores/95%CI) and correlations between fatigue/participation. At baseline, 223 patients/246 parents participated with 94/104 at either T1, T2 or both. Median age was 15 years (IQR:12-17), 74% had a traumatic brain injury. Mean(SD) patient/parent-reported PedsQL (TM) MFS totalscores(baseline) were: 50.3(17.3) and 53.8(19.1), respectively. CASP totalscores were 78.0(16.4) and 87.1(13.6). Over time, patient-reported scores improved significantly (fatigue: + 8.8 (2.9;14.7), p < 0.05)/participation: + 10.5 (6.3;14.7), p < 0.05)). Similar results were found regarding parent-reported fatigue: + 8.7 (3.4;13.9), p < 0.05 but not regarding participation. Two years later, fatigue was still considerable(patients:59.1/parents:62.5). Moderate/fair correlations between fatigue/participation over time were found. Fatigue and participation in young patients with ABI improved two years after referral to rehabilitation. However, fatigue remained a considerable problem. Show less
Objective: To investigate factors that cause impairment of hand function in children with an upper Neonatal Brachial Plexus Palsy (NBPP), we performed an in-depth analysis of tactile hand... Show moreObjective: To investigate factors that cause impairment of hand function in children with an upper Neonatal Brachial Plexus Palsy (NBPP), we performed an in-depth analysis of tactile hand sensibility, especially the ability to correctly localize a sensory stimulus on their fingers.Design: A cross-sectional investigation of children with NBPP, compared with healthy controls. The thickest Semmes-Weinstein (SW) monofila-ment was pressed on the radial or ulnar part of each fingertip (10 regions), while a screen prevented seeing the hand.Setting: Tertiary referral center for nerve lesions in an academic hospital in The Netherlands. The control group was recruited at their school.Participants: Forty-one children with NBPP (mean age 10.0 y) and 25 controls (mean age 9.5 y; N=41). Interventions: Not applicable.Main Outcomes Measures: Correct localization of the applied stimuli was evaluated, per region, per finger, and per dermatome with a test score. The affected side of the NBPP group was compared with the non-dominant hand of the controls.Results: The ability to localize stimuli on the tips of the fingers in children with an upper NBPP was significantly diminished in all fingers, except for the little finger, as compared with healthy controls. Mean localization scores were 6.6 (thumb) and 6.3 (index finger) in the NBPP group and 7.6 in both fingers for controls (maximum score possible is 8.0). Localization scores were significant lower in regions attributed to dermatomes C6 (P<.001) and C7 (P=.001), but not to C8 (P=.115).Conclusion: Children with an upper NBPP showed a diminished and incorrect ability to localize sensory stimuli to their fingers. This finding is likely 1 of the factors underlying the impairment of hand function and should be addressed with sensory focused therapy. Archives of Physical Medicine and Rehabilitation 2023;104:872-7 & COPY; 2022 by the American Congress of Rehabilitation Medicine. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/) Show less
Meijeren-Pont, W. van; Arwert, H.; Volker, G.; Fiocco, M.; Achterberg, W.P.; Vlieland, T.P.M.V.; ... ; Stroke Cohort Outcomes REhabil (SCORE) Study Group 2023
Purpose: To assess the presence of upper extremity pain after stroke over time and the course of its intensity in patients with persistent pain. Materials and methods: Patients with stroke... Show morePurpose: To assess the presence of upper extremity pain after stroke over time and the course of its intensity in patients with persistent pain. Materials and methods: Patients with stroke completed a question on the presence of upper extremity pain (yes/no) and rated its intensity with a visual analogue scale (0-10) at 3, 18, and 30 months after starting multidisciplinary rehabilitation. The presence of upper extremity pain and its intensity over time were analysed with Generalized Estimating Equations models and Linear Mixed Models, respectively. Results: 678 patients were included. The proportions of patients reporting upper extremity pain were 41.8, 36.0, and 32.7% at 3, 18, and 30 months, respectively, with the decline in proportions reaching statistical significance (odds ratio 0.82, 95% confidence interval 0.74-0.92, p < 0.001). At all time points, in those reporting pain the median intensity was 5.0 (interquartile ranges (IQR) 4.0-7.0 at 3 and 3.0-6.0 at 18 and 30 months). In the 73 patients with persistent pain, there was no significant change in intensity over time. Conclusions: The proportion of patients reporting upper extremity pain after stroke was considerable, despite a significant decrease in 2.5 years. In patients reporting persistent pain, the intensity did not change over time. Show less
The concept of pulmonary embolism is evolving. Recent and emerging evidence on the treatment of specific patient populations, its secondary prevention, long-term complications, and the unmet need... Show moreThe concept of pulmonary embolism is evolving. Recent and emerging evidence on the treatment of specific patient populations, its secondary prevention, long-term complications, and the unmet need for rehabilitation has the potential to change clinical practice for the benefit of the patients. This review discusses the recent evidence from clinical trials, observational studies, and guidelines focusing on anticoagulation treatment, rehabilitation, emotional stress, quality of life, and the associated outcomes for patients with pulmonary embolism. Guidelines suggest that the type and duration of treatment with anticoagulation should be based on prevalent risk factors. Recent studies demonstrate that an anticoagulant treatment that is longer than two years may be effective and safe for some patients. The evidence for extended treatment in cancer patients is limited. Careful consideration is particularly necessary for pulmonary embolisms in pregnancy, cancer, and at the end of life. The rehabilitation and prevention of unnecessary deconditioning, emotional distress, and a reduced quality of life is an important, but currently they are unmet priorities for many patients with a pulmonary embolism. Future research could demonstrate optimal anticoagulant therapy durations, follow-ups, and rehabilitation, and effective patient-centered decision making at the end of life. A patient preferences and shared decision making should be incorporated in their routine care when weighing the benefits and risks with primary treatment and secondary prevention. 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
Groot, L.; Vlieland, T.P.M.V.; Peter, W.F.H.; Yildiz, U.; Reijman, M.; Gademan, M.G.J.; PaTIO Study Grp 2022
Background: Military members and veterans exhibit higher rates of injuries and illnesses such as posttraumatic stress disorder (PTSD) because of their increased exposure to combat and other... Show moreBackground: Military members and veterans exhibit higher rates of injuries and illnesses such as posttraumatic stress disorder (PTSD) because of their increased exposure to combat and other traumatic scenarios. Novel treatments for PTSD are beginning to emerge and increasingly leverage advances in gaming and other technologies, such as virtual reality. Without assessing the degree of technology acceptance and perception of usability to the end users, including the military members, veterans, and their attending therapists and staff, it is difficult to determine whether a technology-based treatment will be used successfully in wider clinical practice. The Unified Theory of Acceptance and Use of Technology model is commonly used to address the technology acceptance and usability of applications in 5 domains.Objective: Using the Unified Theory of Acceptance and Use of Technology model, the purpose of this study was to determine the technology acceptance and usability of multimodal motion-assisted memory desensitization and reconsolidation (3MDR) on a virtual reality system in the primary user group (military members and veterans with treatment-resistant PTSD, 3MDR therapists, and virtual reality environment operators).Methods: This mixed methods embedded pilot study included military members (n=3) and veterans (n=8) with a diagnosis of combat-related PTSD, as well as their therapists (n=13) and operators (n=5) who completed pre-post questionnaires before and on completion of 6 weekly sessions of 3MDR. A partial least squares structural equation model was used to analyze the questionnaire results. Qualitative data from the interviews were assessed using thematic analysis.Results: Effort expectancy, which was the most notable predictor of behavioral intention, increased after a course of 3MDR with the virtual reality system, whereas all other constructs demonstrated no significant change. Participants' expectations of the technology were met, as demonstrated by the nonsignificant differences in the pre-post scores. The key qualitative themes included feasibility and function, technical support, and tailored immersion.Conclusions: 3MDR via a virtual reality environment appears to be a feasible, usable, and accepted technology for delivering 3MDR to military members and veterans who experience PTSD and 3MDR therapists and operators who facilitate their treatment. Show less
Adegeest, C.Y.; Gent, J.A.N. van; Stolwijk-Swuste, J.M.; Post, M.W.M.; Vandertop, W.P.; Oner, F.C.; ... ; Wengel, P.V. ter 2022
OBJECTIVE Secondary health conditions (SHCs) are long-term complications that frequently occur due to traumatic spinal cord injury (tSCI) and can negatively affect quality of life in this patient... Show moreOBJECTIVE Secondary health conditions (SHCs) are long-term complications that frequently occur due to traumatic spinal cord injury (tSCI) and can negatively affect quality of life in this patient population. This study provides an overview of the associations between the severity and level of injury and the occurrence of SHCs in tSCI. METHODS A systematic search was conducted in PubMed and Embase that retrieved 44 studies on the influence of severity and/or level of injury on the occurrence of SHCs in the subacute and chronic phase of tSCI (from 3 months after trauma). The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. RESULTS In the majority of studies, patients with motor-complete tSCI (American Spinal Injury Association [ASIA] Impairment Scale [AIS] grade A or B) had a significantly increased occurrence of SHCs in comparison to patients with motor-incomplete tSCI (AIS grade C or D), such as respiratory and urogenital complications, musculoskeletal disorders, pressure ulcers, and autonomic dysreflexia. In contrast, an increased prevalence of pain was seen in patients with motor-incomplete injuries. In addition, higher rates of pulmonary infections, spasticity, and autonomic dysreflexia were observed in patients with tetraplegia. Patients with paraplegia more commonly suffered from hypertension, venous thromboembolism, and pain. CONCLUSIONS This review suggests that patients with a motor-complete tSCI have an increased risk of developing SHCs during the subacute and chronic stage of tSCI in comparison with patients with motor-incomplete tSCI. Future studies should examine whether systematic monitoring during rehabilitation and the subacute and chronic phase in patients with motor-complete tSCI could lead to early detection and potential prevention of SHCs in this population. Show less
Objective: To determine the effects of behavioural interventions in people with oropharyngeal dysphagia. Methods: Systematic literature searches were conducted to retrieve randomized controlled... Show moreObjective: To determine the effects of behavioural interventions in people with oropharyngeal dysphagia. Methods: Systematic literature searches were conducted to retrieve randomized controlled trials in four different databases (CINAHL, Embase, PsycINFO, and PubMed). The methodological quality of eligible articles was assessed using the Revised Cochrane risk-of-bias tool for randomised trials (RoB 2), after which meta-analyses were performed using a random-effects model. Results: A total of 37 studies were included. Overall, a significant, large pre-post interventions effect size was found. To compare different types of interventions, all behavioural interventions and conventional dysphagia treatment comparison groups were categorised into compensatory, rehabilitative, and combined compensatory and rehabilitative interventions. Overall, significant treatment effects were identified favouring behavioural interventions. In particular, large effect sizes were found when comparing rehabilitative interventions with no dysphagia treatment, and combined interventions with compensatory conventional dysphagia treatment. When comparing selected interventions versus conventional dysphagia treatment, significant, large effect sizes were found in favour of Shaker exercise, chin tuck against resistance exercise, and expiratory muscle strength training. Conclusions: Behavioural interventions show promising effects in people with oropharyngeal dysphagia. However, due to high heterogeneity between studies, generalisations of meta-analyses need to be interpreted with care. 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
Rafique, M.; Solberg, O.G.; Gullestad, L.; Bendz, B.; Holm, N.R.; Neghabat, O.; ... ; Lunde, K. 2021
Cardiac allograft vasculopathy (CAV) remains a leading cause of long-term mortality after heart transplantation. Both preventive measures and treatment options are limited. This study aimed to... Show moreCardiac allograft vasculopathy (CAV) remains a leading cause of long-term mortality after heart transplantation. Both preventive measures and treatment options are limited. This study aimed to evaluate the short-term effects of high-intensity interval training (HIT) on CAV in de novo heart transplant (HTx) recipients as assessed by optical coherence tomography (OCT). The study population was a subgroup of the 81-patient HITTS study in which HTx recipients were randomized to HIT or moderate intensity continuous training (MICT) for nine consecutive months. OCT images from baseline and 12 months were compared to assess CAV progression. The primary endpoint was defined as the change in the mean intima area. Paired OCT data were available for 56 patients (n = 23 in the HIT group and n = 33 in the MICT group). The intima area in the entire study population increased by 25% [from 1.8 +/- 1.4 mm(2) to 2.3 +/- 2.0 mm(2), P < .05]. The change was twofold higher in the MICT group (.6 +/- 1.2 mm(2)) than in the HIT group (.3 +/-.6 mm(2)). However, the treatment effect of HIT was not significant (treatment effect = -.3 mm(2), 95% CI [-.825 to .2 mm(2)] P = .29). These results suggest that early initiation of HIT compared with MICT does not attenuate CAV progression in de novo HTx recipients. Show less
Objective: To estimate societal costs and changes in health-related quality of life in stroke patients, up to one year after start of medical specialist rehabilitation.& nbsp; Design:... Show moreObjective: To estimate societal costs and changes in health-related quality of life in stroke patients, up to one year after start of medical specialist rehabilitation.& nbsp; Design: Observational.& nbsp; Patients: Consecutive patients who received med ical specialist rehabilitation in the Stroke Cohort Out-comes of REhabilitation (SCORE) study.& nbsp; Methods: Participants completed questionnaires on health-related quality of life (EuroQol EQ-5D-3L), absenteeism, out-of-pocket costs and healthcare use at start and end of rehabilitation and 6 and 12 months after start. Clinical characteristics and reha-bilitation costs were extracted from the medical and financial records, respectively.& nbsp; Results: From 2014 to 2016 a total of 313 stroke patients completed the study. Mean age was 59 (standard deviation (SD) 12) years, 185 (59%) were male, and 244 (78%) inpatients. Mean costs for inpatient and outpatient rehabilitation were US$70,601 and US$27,473, respectively. For in-patients, utility (an expression of quality of life) in-creased significantly between baseline and 6 months (EQ-5D-3L 0.66 & ndash;0.73, p = 0.01; visual analogue scale 0.77 & ndash;0.82, p < 0.001) and between baseline and 12 months (visual analogue scale 0.77 & ndash;0.81, p < 0.001).& nbsp; Conclusion: One-year societal costs from after the start of rehabilitation in stroke patients were con-siderable. Future research should also include costs prior to rehabilitation. For inpatients, health-related quality of life, expressed in terms of utility, improved significantly over time. 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
Allonsius, F.; Kloet, A. de; Bedell, G.; Markus-Doornbosch, F. van; Rosema, S.; Meesters, J.; ... ; Holst, M. van der 2021
Improving participation is an important aim in outpatient rehabilitation treatment. Knowledge regarding participation restrictions in children and young adults with acquired brain injury (ABI) is... Show moreImproving participation is an important aim in outpatient rehabilitation treatment. Knowledge regarding participation restrictions in children and young adults with acquired brain injury (ABI) is scarce and little is known regarding the differences in perspectives between patients and parents in the outpatient rehabilitation setting. The aims are to describe participation restrictions among children/young adults (5-24 years) with ABI and investigating differences between patients' and parents' perspectives. At admission in 10 rehabilitation centers, patients and parents were asked to complete the Child and Adolescent Scale of Participation (CASP; score 0-100; lower score = more restrictions) and injury/patient/family-related questions. CASP scores were categorized (full/somewhat-limited/limited/very-limited participation). Patient/parent-reported outcomes were compared using the Wilcoxon signed-rank test. 223 patients and 245 parents participated (209 paired-samples). Median patients' age was 14 years (IQR; 11-16), 135 were female (52%), 195 had traumatic brain injury (75%). The median CASP score reported by patients was 82.5 (IQR: 67.5-90) and by parents 91.3 (IQR: 80.0-97.5) (difference = p < 0.05). The score of 58 patients (26%) and 25 parents (10%) was classified as 'very-limited'. Twenty-six percent of children and young adults referred for rehabilitation after ABI had "very-limited" participation. Overall, parents rated their child's participation better than patients themselves. Quantifying participation restrictions after ABI and considering both perspectives is important for outpatient rehabilitation treatment. Show less
Background:Physical exercises targeting proprioception are part of conservative therapy for Subacromial Pain Syndrome (SAPS). However, the effect of such exercises on proprioception itself has not... Show moreBackground:Physical exercises targeting proprioception are part of conservative therapy for Subacromial Pain Syndrome (SAPS). However, the effect of such exercises on proprioception itself has not been orderly established, hampering the advancement of treatment protocols and implementation. We summarised the evidence for a loss of proprioception in SAPS and defined the type of interventions that target and improve proprioception in SAPS. Methods:Two reviewers independently analysed 12/761 articles that evaluated joint position, kinaesthetic or force sense in patients with SAPS. Results:Patients with SAPS had reduced joint position sense during abduction. There was no evidence for a loss of kinaesthetic sense or force sense. Stretching, strengthening and stabilisation exercises improved joint position and kinaesthetic sense in SAPS. Microcurrent electrical stimulation and kinesiotaping did not improve proprioception in SAPS. Conclusions:The lack of evidence on proprioception in SAPS is striking. We found limited evidence for a loss of joint position sense in the higher ranges of abduction in SAPS. Active training programmes including strengthening and stabilisation exercises showed superiority in terms of enhancing proprioception relative to passive methods like kinesiotaping. The results of this narrative synthesis should be used as a base for providing value-based and data-driven treatment solutions to SAPS. Show less
Heus, I.; Weezenberg, D.; Severijnen, S.; Vlieland, T.V.; Holst, M. van der 2020
Purpose:Although measuring outcome of rehabilitation in children with Developmental Coordination Disorder is considered important no consensus exists on which instruments to use. An important... Show morePurpose:Although measuring outcome of rehabilitation in children with Developmental Coordination Disorder is considered important no consensus exists on which instruments to use. An important attribute of a measurement instrument would be that it is sensitive to clinical changes. The aim of this prospective, observational study was therefore to investigate the responsiveness of six potentially suitable instruments. Methods:Forty-one children (34 boys, median age 7.8 years, Inter Quartile Range: 7.2-9.2) receiving multidisciplinary rehabilitation treatment for Developmental Coordination Disorder were included (mean treatment time: 32.8 h, Standard Deviation 7.3). The following instruments were applied before and after rehabilitation: Movement-Asessment-Battery-Children-2 (MABC-2), Canadian Occupational Performance Measure (COPM), Systematic detection writing problems (SOS-2-NL), DCD-daily, Behaviour Rating Inventory of Executive Function (BRIEF), and TNO-AZL children's Quality of Life questionnaire (TACQOL)). Change-scores (paired t-test/Wilcoxon-test) and responsiveness (Effect-sizes and Standardized-Response-Means) were calculated. Results:Significant differences over time were found for the Canadian Occupational Performance Measure, DCDdaily and Movement-Asessment-Battery-Children-2 (p < 0.05). The responsiveness of these instruments was moderate-high (Canadian Occupational Performance Measure-performance Effect-Size:1.70/Standardized-Response-Mean:1.81, Canadian Occupational Performance Measure-satisfaction Effect-Size:1.65/Standardized-Response-Mean 1.53; DCDdaily-total-score Effect-Size:0.40/Standardized-Response-Mean:0.62, DCDdaily-Quality-score Effect-Size:0.74/Standardized-Response-Mean:0.89, DCDdaily-time-score Effect-Size:0.21/Standardized-Response-Mean:0.43; MABC-2-total-score Effect-Size:0.42/Standardized-Response-Mean:0.43, MABC-2-Ball-skills-score Effect-Size:0.33/Standardized-Response-Mean:0.36). Systematic detection of writing problems (SOS-2-NL), Behaviour Rating Inventory of Executive Function (BRIEF) and TNO-AZL children's Quality of Life questionnaire (TACQOL) were not responsive to change. Conclusion:Although the Movement-Asessment-Battery-Children-2 test is the most widely used instrument when measuring rehabilitation outcome in Developmental Coordination Disorder, the Canadian Occupational Performance Measure and DCDdaily seem to be more responsive and constitute a valuable addition. Show less
Objectives:To gain insight into the experiences of patients with diffuse cutaneous systemic sclerosis during and after autologous hematopoietic stem cell transplantation.Methods:Semi-structured... Show moreObjectives:To gain insight into the experiences of patients with diffuse cutaneous systemic sclerosis during and after autologous hematopoietic stem cell transplantation.Methods:Semi-structured interviews were conducted with patients who underwent hematopoietic stem cell transplantation in four university hospitals in the Netherlands. Interviews were transcribed verbatim and thematically analyzed.Results:Nine male and seven female patients were interviewed, median age 47 years (range: 27-68). Patients mentioned their life was severely disrupted before hematopoietic stem cell transplantation and remained unsettled a long time after treatment. Uncertainty because of disease progression, loss of control over health and the sense of time and fear of treatment-related adverse events were common during hospitalization. After hematopoietic stem cell transplantation, patients experienced more physical limitations than they had expected, and recovery took longer and was mentally taxing. Going back to work and finding a new balance in personal relations and social life was complicated. Patients described various strategies to deal with challenges. Family and friends provided essential support, although many experienced a dwindling social circle. Most patients also appreciated peer support. All patients were satisfied with the low threshold for contact with physicians and nurses during hospitalization. However, aftercare focused on medical aspects rather than on psychological well-being and social issues. Moreover, patients would have preferred to be better prepared on what to expect after discharge, and lacked information about self-management, prognosis, optimal recovery, work, sexuality, and family planning.Conclusion:Hematopoietic stem cell transplantation has a major physical and psychological impact on patients with diffuse cutaneous systemic sclerosis. The course of recovery after this intensive therapy was unexpectedly long for some patients and offer of support was far less pro-active post-HSCT compared to pre-HSCT and during HSCT. Show less
