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
Allonsius, F.; Kloet, A.J. de; Markus-Doornbosch, F. van; Vlieland, T.P.M.V.; Holst, M. van der 2023
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
Sarac, C.; Nelissen, R.G.H.H.; Holst, M. van der; Malessy, M.J.A.; Pondaag, W. 2022
Purpose To explore and compare the perspectives of patients and their parents (PPs) with a brachial plexus birth injury (BPBI) with those of health care professionals (HCPs). Materials and methods... Show morePurpose To explore and compare the perspectives of patients and their parents (PPs) with a brachial plexus birth injury (BPBI) with those of health care professionals (HCPs). Materials and methods We conducted a study using a questionnaire among PPs and HCPs. Importance of different outcome categories was scored on a Likert scale. Items were linked to corresponding categories of the International Classification of Functioning, Disability and Health. Means were compared using analysis of variance (ANOVA). Results Data were collected from 184 patients and 65 HCPs. We found a difference in 7/14 outcome categories between joint PP groups and HCPs. Parents scored outcome evaluation categories as more important than patients, categories filled out together by patient and parent scored in between (p < 0.05). The majority of PPs and HCPs rated outcome assessment as important in more domains than "Body functions" and "Body structures". The biggest difference was found in the importance of evaluation of pain. Conclusions Outcome assessment in the domains "Activities and participation" and "Environmental factors" was rated as important by both PPs and HCPs. Evaluation of pain was more often scored as important by PPs. Different domains seem to be underestimated by HCPs and need more attention during consultation. Show less
Background: Outcome measures for non-ambulant Duchenne muscular dystrophy (DMD) patients are limited, with only the Performance of the Upper Limb (PUL) approved as endpoint for clinical trials... Show moreBackground: Outcome measures for non-ambulant Duchenne muscular dystrophy (DMD) patients are limited, with only the Performance of the Upper Limb (PUL) approved as endpoint for clinical trials.Objective: We assessed four outcome measures based on devices developed for the gaming industry, aiming to overcome disadvantages of observer-dependency and motivation.Methods: Twenty-two non-ambulant DMD patients (range 8.6-24.1 years) and 14 healthy controls (HC; range 9.5-25.4 years) were studied at baseline and 16 patients at 12 months using Leap Motion to quantify wrist/hand active range of motion (aROM) and a Kinect sensor for reached volume with Ability Captured Through Interactive Video Evaluation (ACTIVE), Functional Workspace (FWS) summed distance to seven upper extremity body points, and trunk compensation (KinectTC). PUL 2.0 was performed in patients only. A stepwise approach assessed quality control, construct validity, reliability, concurrent validity, longitudinal change and patient perception.Results: Leap Motion aROM distinguished patients and HCs for supination, radial deviation and wrist flexion (rangep = 0.006 to <0.001). Reliability was low and the manufacturer's hand model did not match the sensor's depth images. ACTIVE differed between patients and HCs (p < 0.001), correlated with PUL (rho = 0.76), and decreased over time (p = 0.030) with a standardized response mean (SRM) of -0.61. It was appraised as fun on a 10-point numeric rating scale (median 9/10). PUL decreased over time (p < 0.001) with an SRM of -1.28, and was appraised as fun (median 7/10). FWS summed distance distinguished patients and HCs (p < 0.001), but reliability in patients was insufficient. KinectTC differed between patients and HCs (p < 0.01), but correlated insufficiently with PUL (rho = -0.69).Conclusions: Only ACTIVE qualified as potential outcome measure in non-ambulant DMD patients, although the SRM was below the commonly used threshold of 0.8. Lack of insight in technological constraints due to intellectual property and software updates made the technology behind these outcome measures a kind of black box that could jeopardize long-term use in clinical development. Show less
Naarding, K.J.; Holst, M. van der; Zwet, E.W. van; Velde, N.M. van de; Groot, I.J.M. de; Verschuuren, J.J.G.M.; ... ; Niks, E.H. 2021
Background and Objectives To study the potential of quantitative MRI (qMRI) fat fraction (FF) as a biomarker in nonambulant patients with Duchenne muscular dystrophy (DMD), we assessed the additive... Show moreBackground and Objectives To study the potential of quantitative MRI (qMRI) fat fraction (FF) as a biomarker in nonambulant patients with Duchenne muscular dystrophy (DMD), we assessed the additive predictive value of elbow flexor FF to age at loss of hand-to-mouth movement. Methods Nonambulant patients with DMD (age >= 8 years) were included. Four-point Dixon MRI scans of the right upper arm were performed at baseline and at the 12-, 18-, or 24-month follow-up. Elbow flexor FFs were determined from 5 central slices. Loss of hand-to-mouth movement was determined at study visits and by phone calls every 4 months. FFs were fitted to a sigmoidal curve by use of a mixed model with random slope to predict individual trajectories. The added predictive value of elbow flexor FF to age at loss of hand-to-mouth movement was calculated from a Cox model with the predicted FF as a time-varying covariate, yielding a hazard ratio. Results Forty-eight MRIs of 20 patients with DMD were included. The hazard ratio of a percent-point increase in elbow flexor FF for the time to loss of hand-to-mouth movement was 1.12 (95% confidence interval 1.04-1.21; p = 0.002). This corresponded to a 3.13-fold increase in the instantaneous risk of loss of hand-to-mouth movement in patients with a 10-percent points higher elbow flexor FF at any age. Discussion In this prospective study, elbow flexor FF predicted loss of hand-to-mouth movement independently of age. qMRI-measured elbow flexor FF can be used as a surrogate endpoint or stratification tool for clinical trials in nonambulant patients with DMD. Classification of Evidence This study provides Class II evidence that qMRI FF of elbow flexor muscles in patients with DMD predicts loss of hand-to-mouth movement independently of age. Show less
Heijningen, V.G. van; Cardol, M.; Heijningen-Tousain, H.J.M. van; Oosterveer, D.M.; Markus-Doornbosch, F. van; Sattoe, J.N.T.; ... ; Hilberink, S.R. 2021
Background: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct.... Show moreBackground: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct. Next to formal and theoretical significations, and civil rights acts such as the UN Convention on the Rights for Persons with Disabilities (CRPD), the meaning of citizenship is formed by the person themselves. The present study aimed to gain insight into what citizenship means for adults with CP 40 years or older and what is needed to support and pursue their citizenship to improve person-centered rehabilitation which can facilitate this process.Methods: Adults with CP (>40 years) without intellectual disability were recruited from medical records of a large rehabilitation center to participate in a qualitative study using the photovoice method. Participants were asked to take photos of objects or life situations that constituted citizenship for them; these photos were then the prompts for the semi-structured interviews that were held face-to-face at their homes. Background and clinical characteristics were gathered using a short face-to-face questionnaire. Data were analyzed through inductive thematic analysis.Results: Nineteen adults participated [mean age (SD) 57.8 (9.4) years (range 44-79), six men]. From the analysis four themes emerged: (a) Meanings of citizenship; (b) Citizenship: Facilitator and barriers; (c) Paradoxes of support and participation; and (d) Future. Furthermore, next to the ability to participate in society without restrictions, sense of belonging was reported to be an important aspect of "meanings of citizenship." The physiotherapist was perceived as an important health professional to maintain physical activity and deal with the impact of aging with CP on daily activities. Complex healthcare and support services regulations and aging affected citizenship negatively.Conclusion: Middle-aged and older adults with CP view citizenship as the ability to participate and belong in society. To optimize their citizenship the challenges and individual needs must be seen and supported by person-centered rehabilitation and support services. Simplification of complex healthcare and services regulations can further improve citizenship. Show less
Background Clinical trials in Duchenne muscular dystrophy (DMD) focus primarily on ambulant patients. Results cannot be extrapolated to later disease stages due to a decline in targeted muscle... Show moreBackground Clinical trials in Duchenne muscular dystrophy (DMD) focus primarily on ambulant patients. Results cannot be extrapolated to later disease stages due to a decline in targeted muscle tissue. In non-ambulant DMD patients, hand function is relatively preserved and crucial for daily-life activities. We used quantitative MRI (qMRI) to establish whether the thenar muscles could be valuable to monitor treatment effects in non-ambulant DMD patients.Methods Seventeen non-ambulant DMD patients (range 10.2-24.1 years) and 13 healthy controls (range 9.5-25.4 years) underwent qMRI of the right hand at 3 T at baseline. Thenar fat fraction (FF), total volume (TV), and contractile volume (CV) were determined using 4-point Dixon, and T2(water) was determined using multiecho spin-echo. Clinical assessments at baseline (n = 17) and 12 months (n = 13) included pinch strength (kg), performance of the upper limb (PUL) 2.0, DMD upper limb patient reported outcome measure (PROM), and playing a video game for 10 min using a game controller. Group differences and correlations were assessed with non-parametric tests.Results Total volume was lower in patients compared with healthy controls (6.9 cm(3), 5.3-9.0 cm(3) vs. 13.0 cm(3), 7.6-15.8 cm(3), P = 0.010). CV was also lower in patients (6.3 cm(3), 4.6-8.3 cm(3) vs. 11.9 cm(3), 6.9-14.6 cm(3), P = 0.010). FF was slightly elevated (9.7%, 7.3-11.4% vs. 7.7%, 6.6-8.4%, P = 0.043), while T2(water) was higher (31.5 ms, 30.0-32.6 ms vs. 28.1 ms, 27.8-29.4 ms, P < 0.001). Pinch strength and PUL decreased over 12 months (2.857 kg, 2.137-4.010 to 2.243 kg, 1.930-3.339 kg, and 29 points, 20-36 to 23 points, 17-30, both P < 0.001), while PROM did not (49 points, 36-57 to 44 points, 30-54, P = 0.041). All patients were able to play for 10 min at baseline or follow-up, but some did not comply with the study procedures regarding this endpoint. Pinch strength correlated with TV and CV in patients (rho = 0.72 and rho = 0.68) and controls (both rho = 0.89). PUL correlated with TV, CV, and T2(water) (rho = 0.57, rho = 0.51, and rho = -0.59).Conclusions Low thenar FF, increased T2(water), correlation of muscle size with strength and function, and the decrease in strength and function over 1 year indicate that the thenar muscles are a valuable and quantifiable target for therapy in later stages of DMD. Further studies are needed to relate these data to the loss of a clinically meaningful milestone. 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
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
Holst, M. van der; Steenbeek, D.; Pondaag, W.; Nelissen, R.G.H.H.; Vlieland, T.P.M.V. 2020
To investigate health-care use (HCU) and information needs of children aged 0-18 years with neonatal brachial plexus palsy (NBPP), a cross-sectional study was performed. Patients and/or parents... Show moreTo investigate health-care use (HCU) and information needs of children aged 0-18 years with neonatal brachial plexus palsy (NBPP), a cross-sectional study was performed. Patients and/or parents seen in our NBPP clinic were invited to complete a survey comprising questions on HCU due to NBPP and current information needs. Outcomes were described for three age-groups (0-1/2-9/10-18 years), based on follow-up status (early/late/no-discharge). Four hundred sixty-five parents/patients participated (59 in the 0-1, 226 in the 2-9, and 180 in the 10-18-year group). Two hundred ninety-three patients had C5-C6 lesions, 193 were discharged from follow-up, 83 of whom categorized as 'early discharged' (<1 year of age). Over the past year, 198 patients had contact with the expert team (49 in the 0-1, 81 in the 2-9, and 68 in the 10-18-year group) and 288 with at least one other health-care professional (53 in the 0-1, 133 in the 2-9, and 102 in the 10-18-year group). Of the 83 patients discharged early, 34 reported health-care use. Two hundred twenty-eight participants reported current information needs of whom 23 were discharged early. HCU and information needs of Dutch children with NBPP remains considerable even in children who were discharged. Stricter follow-up and information provision for these patients is needed. 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
Neonatal brachial plexus palsy (NBPP) is a nerve injury to the brachial plexus which controls arm-movements. This thesis describes the impact of this injury on the lives of patients in terms... Show moreNeonatal brachial plexus palsy (NBPP) is a nerve injury to the brachial plexus which controls arm-movements. This thesis describes the impact of this injury on the lives of patients in terms of quality of life, participation, healthcare use and treatment outcomes. Findings in this thesis have led to important insights into the care for patients with NBPP and their families. It turns out that there is considerable information need in these patients, that NBPP has impact on families of very young patients and adult patients perceive influence of NBPP on their study and career choices. This thesis also showed that when describing outcomes of shoulder surgery (tendon-transfers) it is important to take into account treatment history because outcomes differ for children with a surgical treatment history. This may help to manage patients’ outcome expectations. A recommendation in this thesis is to develop and investigate a standardized paramedic treatment protocol for the different life-phases of NBPP patients because this is not available yet. Hereby, a more strict follow-up is very important. Furthermore, better information should be developed in order to provide NBPP patients with the information they need throughout their lifespan. Findings in this thesis can be used for this. Show less
Holst, M. van der; Steenbeek, D.; Pondaag, W.; Nelissen, R.G.H.H.; Vlieland, T.P.M.V. 2016
