Perspectives of refugee parents and unaccompanied minors on initial health assessment and access to care.

To explore the needs, expectations, and experiences of asylum-seeking parents and unaccompanied minors under the age of 18 years on the initial health assessment for children and adolescents and access to care upon entry in the Netherlands, We conducted five semi-structured focus group discussions with asylum-seeking parents and unaccompanied minors, from Syria, Eritrea, Afghanistan, and other Middle-East and African countries, supported by professional interpreters. To triangulate findings, semi-structured interviews with health care professionals involved in care for refugee children were conducted. Transcripts of focus group discussions were inductively and deductively coded and content analyzed; transcripts of interviews were deductively coded and content analyzed. In total, 31 asylum-seeking participants: 23 parents of 101 children (between 0 and 18 years old), 8 unaccompanied minors (between 15 and 17 years), and 6 healthcare professionals participated. Parents and minors expressed that upon entry, their needs were met for vaccinations, but not for screening or care for physical and mental health problems. Parents, minors, and health professionals emphasized the necessity of appropriate information and education about health, diseases, and the health system. Cultural change was mentioned as stressful for the parent-child interaction and parental well-being.     Conclusion: The perspectives of refugee parents and unaccompanied minors revealed opportunities to improve the experience of and access to health care of refugees entering the Netherlands, especially risk-specific screening and more adequate education about health, diseases, and the Dutch health care system. What is Known: •  Refugees have specific health needs due to pre-flight, flight, and resettlement conditions. Health assessment upon entry was non-obligatory in the Netherlands, except for the tuberculosis screening. Health needs were not always met, and refugees experienced barriers in access to care. What is New: • The initial health assessment met the needs concerning vaccinations but mismatched the needs regarding physical and mental health assessment. Screening for specific risk-related diseases and mental health could enable refugee parents and minors to engage better with the health system.

Peri-operative desmopressin combined with pharmacokinetic-guided factor VIII concentrate in non-severe haemophilia A patients.

INTRODUCTION: Non-severe haemophilia A patient can be treated with desmopressin or factor VIII (FVIII) concentrate. Combining both may reduce factor consumption, but its feasibility and safety has never been investigated. AIM: We assessed the feasibility and safety of combination treatment in nonsevere haemophilia A patients. METHODS: Non-severe, desmopressin responsive, haemophilia A patients were included in one of two studies investigating peri-operative combination treatment. In the single-arm DAVID study intravenous desmopressin (0.3 µg/kg) once-a-day was, after sampling, immediately followed by PK-guided FVIII concentrate, for maximally three consecutive days. The Little DAVID study was a randomized trial in patients undergoing a minor medical procedure, whom received either PK-guided combination treatment (intervention arm) or PK-guided FVIII concentrate only (standard arm) up to 2 days. Dose predictions were considered accurate if the absolute difference between predicted and measured FVIII:C was ≤0.2 IU/mL. RESULTS: In total 32 patients (33 procedures) were included. In the DAVID study (n = 21), of the FVIII:C trough levels 73.7% (14/19) were predicted accurately on day 1 (D1), 76.5% (13/17) on D2. On D0, 61.9% (13/21) of peak FVIII:C levels predictions were accurate. In the Little DAVID study (n = 12), on D0 83.3% (5/6) FVIII:C peak levels for both study arms were predicted accurately. Combination treatment reduced preoperative FVIII concentrate use by 47% versus FVIII monotherapy. Desmopressin side effects were mild and transient. Two bleeds occurred, both despite FVIII:C > 1.00 IU/mL. CONCLUSION: Peri-operative combination treatment with desmopressin and PK-guided FVIII concentrate dosing in nonsevere haemophilia A is feasible, safe and reduces FVIII consumption.

Exploring the core network of the structural covariance network in childhood absence epilepsy.

Childhood absence epilepsy (CAE) is a generalized pediatric epilepsy, which is generally considered to be a benign condition since most children become seizure-free before reaching adulthood. However, cognitive deficits and changes of brain morphological have been previously reported in CAE. These morphological changes, even if they might be very subtle, are not independent due to the underlying network structure and can be captured by the structural covariance network (SCN). In this study, SCNs were used to quantify the structural brain network for children with CAE as well as controls. Seventeen children with CAE (6-12y) and fifteen controls (6-12y) were included. To estimate the SCN, T1-weighted images were acquired and parcellated into 68 cortical regions. Graph measures characterizing the core network architecture, i.e. the assortativity and rich-club coefficient, were calculated for all individuals. Multivariable linear regression models, including age and sex as covariates, were used to assess differences between children with CAE and controls. Additionally, potential relations between the core network and cognitive performance was investigated. A lower assortativity (i.e. less efficiently organized core network organization) was found for children with CAE compared to controls. Moreover, better cognitive performance was found to relate to stronger assortative mixing pattern (i.e. more efficient core network structure). Rich-club coefficients did not differ between groups, nor relate to cognitions. The core network organization of the SCN in children with CAE tend to be less efficient organized compared to controls, and relates to cognitive performance, and therefore this study provides novel insights into the SCN organization in relation to CAE and cognition.

Desmopressin in nonsevere hemophilia A: patient perspectives on use and efficacy.

Background: Desmopressin increases plasma factor VIII and von Willebrand factor levels in persons with nonsevere hemophilia A. Patients' perspectives on desmopressin are relevant to increase and optimize its suboptimal use. However, patients' views on desmopressin are not reported. Objectives: To evaluate the perspectives of persons with nonsevere hemophilia A on desmopressin use, barriers for its use, side effects, and their knowledge about desmopressin's efficacy and side effects. Methods: Persons with nonsevere hemophilia A were included in a cross-sectional, national, multicenter study. Questionnaires were filled out by adult patients and children aged ≥12 years themselves. Caretakers filled out questionnaires for children aged <12 years. Results: In total, 706 persons with nonsevere hemophilia A were included (544 mild, 162 moderate, [age range, 0-88 years]). Of 508 patients, 234 (50%) patients reported previous desmopressin use. Desmopressin was considered as at least moderately effective in 171 of 187 (90%) patients. Intranasal administration was the modality of choice for 138 of 182 (76%) patients. Flushing was the most reported side effect in 54 of 206 (26%) adults and 7 of 22 (32%) children. The most frequently reported advantage and disadvantage were the convenience of intranasal, out-of-hospital administration by 56% (126/227) and side effects in 18% (41/227), respectively. Patients' self-perceived knowledge was unsatisfactory or unknown in 28% (63/225). Conclusion: Overall, desmopressin was most often used intranasally and considered effective, with flushing as the most common side effect. The most mentioned advantage was the convenience of intranasal administration and disadvantage was side effects. More information and education on desmopressin could answer unmet needs in patients with current or future desmopressin treatment.

Transition readiness among adolescents and young adults with haemophilia in the Netherlands: Nationwide questionnaire study.

INTRODUCTION: Care for adolescents with haemophilia is transferred from paediatric to adult care around the age of 18 years. Transition programs help to prepare adolescents for this transfer and prevent declining treatment adherence. Evaluating transition readiness may identify areas for improvement. OBJECTIVE: Assess transition readiness among Dutch adolescents and young adults with haemophilia, determine factors associated with transition readiness, and identify areas of improvement in transition programs. METHODS: All Dutch adolescents and young adults aged 12-25 years with haemophilia were invited to participate in a nationwide questionnaire study. Transition readiness was assessed using multiple-choice questions and was defined as being ready or almost ready for transition. Potential factors associated with transition readiness were investigated, including: socio-demographic and disease-related factors, treatment adherence, health-related quality of life, and self-efficacy. RESULTS: Data of 45 adolescents and 84 young adults with haemophilia (47% with severe haemophilia) were analyzed. Transition readiness increased with age, from 39% in 12-14 year-olds to 63% in 15-17 year-olds. Nearly all post-transition young adults (92%, 77/84) reported they were ready for transition. Transition readiness was associated with treatment adherence, as median VERITAS-Pro treatment adherence scores were worse in patients who were not ready (17, IQR 9-29), compared to those ready for transition (11, IQR 9-16). Potential improvements were identified: getting better acquainted with the adult treatment team prior to transition and information on managing healthcare costs. CONCLUSIONS: Nearly all post-transition young adults reported they were ready for transition. Improvements were identified regarding team acquaintance and preparation for managing healthcare costs.

Patients' and health care providers' perspectives on quality of hemophilia care in the Netherlands: a questionnaire and interview study.

Background: Hemophilia care has improved greatly because of advances in treatment options and comprehensive care. In-depth insight into the perspectives of persons with hemophilia and health care providers on their care may provide targets for further improvements. Objectives: To assess satisfaction of the hemophilia population with their care, to explore factors determining care satisfaction, and to identify areas for potential health care improvements, including digital health tools. Methods: First, to assess care satisfaction and factors determining satisfaction and health care improvements, data from a nationwide, cross-sectional questionnaire among 867 adult and pediatric Dutch persons with hemophilia A or B were analyzed. This included the Hemophilia Patient Satisfaction Scale questionnaire, Canadian Hemophilia Outcomes Kids' Life Assessment Tool satisfaction questions, a visual analog scale satisfaction score, and open questions. Second, to further explore factors determining satisfaction and health care improvements, semistructured interviews were conducted with 19 persons with hemophilia or their parents and 18 health care providers. Results: High care satisfaction was found, with an overall median Hemophilia Patient Satisfaction Scale score of 12 (IQR, 6-21). Participants in the interviews reported that patient-professional interactions, availability of care, and coordination of care were major factors determining satisfaction. Suggested health care improvements included improved information provision and coordination of care, especially shared care with professionals not working within comprehensive care centers. Participants suggested that digital health tools could aid in this. Conclusion: Satisfaction with hemophilia care is high among persons with hemophilia in the Netherlands, although several potential improvements have been identified. Accentuating these is especially relevant in the current era of treatment innovations, in which we might focus less on other aspects of care.

Neurophysiological signatures reflect differences in visual attention during absence seizures.

OBJECTIVE: Absences affect visual attention and eye movements variably. Here, we explore whether the dissimilarity of these symptoms during absences is reflected in differences in electroencephalographic (EEG) features, functional connectivity, and activation of the frontal eye field. METHODS: Pediatric patients with absences performed a computerized choice reaction time task, with simultaneous recording of EEG and eye-tracking. We quantified visual attention and eye movements with reaction times, response correctness, and EEG features. Finally, we studied brain networks involved in the generation and propagation of seizures. RESULTS: Ten pediatric patients had absences during the measurement. Five patients had preserved eye movements (preserved group) and five patients showed disrupted eye movements (unpreserved group) during seizures. Source reconstruction showed a stronger involvement of the right frontal eye field during absences in the unpreserved group than in the preserved group (dipole fraction 1.02% and 0.34%, respectively, p < 0.05). Graph analysis revealed different connection fractions of specific channels. CONCLUSIONS: The impairment of visual attention varies among patients with absences and is associated with differences in EEG features, network activation, and involvement of the right frontal eye field. SIGNIFICANCE: Assessing the visual attention of patients with absences can be usefully employed in clinical practice for tailored advice to the individual patient.

[Personal health records: a promising tool?] / Persoonlijke gezondheidsomgeving.

Currently, nearly all health care institutions in the Netherlands employ patient portals to help engage and empower patients. Yet, the fragmented landscape of incompatible portals hampers patient engagement. The implementation of national personal health records (PHRs) could help to resolve this. PHRs are websites or apps in which all relevant medical data of all health care providers involved are collected. PHRs are managed by patients. The Netherlands has adopted a free-market model, in which private companies develop PHRs and the government acts as a controlling body. Although PHRs can ultimately aid shared-decision making and patient participation, several challenges have to be overcome. How are safety and privacy taken into consideration? How will PHRs change the communication between patients and health care providers? Can we standardize and integrate all relevant patient information? And finally, how can we make PHRs understandable and easy-to-use for all patients, especially those with lower health literacy?

The need of having a plan in excessive infant crying - A qualitative study of parents' experiences of healthcare support.

AIM: Excessive infant crying increases parents' concerns regarding their infant's health and the burden of parenting. We aimed to gain insight into the healthcare support needs of parents with excessively crying infants. METHODS: An exploratory qualitative study was conducted in the Netherlands. We performed semi-structured interviews with parents of 12 infants between June and December 2020, followed by inductive and deductive thematic analysis. RESULTS: Parents described what their needs were with regard to the assessment of infant crying and support by professionals. Long-lasting crying made parents feel that there must be a somatic cause. If they could soothe their infant, they gained more confidence that their infant was healthy. We identified four interrelated themes: (i) confidence in the professional; (ii) seeking a somatic cause for the crying; (iii) seeking acknowledgment; and (iv) exhaustion of parents and feelings of failure. CONCLUSION: Parental support needs were best fulfilled by professionals who took them seriously, demonstrated medical expertise, and offered a practical plan. Perinatal parental education on normal infant behaviour and infant soothing techniques might improve parental self-efficacy at an early stage and prevent medicalization of excessive crying.

A Potential Multimodal Test for Clinical Assessment of Visual Attention in Neurological Disorders.

Attention is an important aspect of human brain function and often affected in neurological disorders. Objective assessment of attention may assist in patient care, both for diagnostics and prognostication. We present a compact test using a combination of a choice reaction time task, eye-tracking and EEG for assessment of visual attention in the clinic. The system quantifies reaction time, parameters of eye movements (i.e. saccade metrics and fixations) and event related potentials (ERPs) in a single and fast (15 min) experimental design. We present pilot data from controls, patients with mild traumatic brain injury and epilepsy, to illustrate its potential use in assessing attention in neurological patients. Reaction times and eye metrics such as fixation duration, saccade duration and latency show significant differences (p < .05) between neurological patients and controls. Late ERP components (200-800 ms) can be detected in the central line channels for all subjects, but no significant group differences could be found in the peak latencies and mean amplitudes. Our system has potential to assess key features of visual attention in the clinic. Pilot data show significant differences in reaction times and eye metrics between controls and patients, illustrating its promising use for diagnostics and prognostication.

Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study.

Background and objectives: Treatment availability and comprehensive care have resulted in improved clinical outcomes for persons with hemophilia. Recent data on socioeconomic participation in the Netherlands are lacking. This study assessed participation in education, in the labor market, and social participation for persons with hemophilia compared with the general male population. Methods: Dutch adults and children (5-75 years) of all hemophilia severities (n = 1009) participated in a questionnaire study that included sociodemographic, occupational, and educational variables. Clinical characteristics were extracted from electronic medical records. General population data were extracted from Statistics Netherlands. Social participation was assessed with the PROMIS Ability to Participate in Social Roles and Activities short form, with a minimal important difference set at 1.0. Results: Data from 906 adults and children were analyzed. Participation in education of 20 to 24 year olds was 68% (general male population: 53%). Educational attainment was higher compared with Dutch males, especially for severe hemophilia. Absenteeism from school was more common than in the general population. The employment-to-population ratio and occupational disability were worse for severe hemophilia than in the general population (64.3% vs. 73.2% and 14.7% vs. 4.8%, respectively), but similar for nonsevere hemophilia. Unemployment was 5.4% (general male population: 3.4%). Absenteeism from work was less common (38% vs. 45.2%). Mean PROMIS score was similar to or higher than in the general population (54.2; SD 8.9 vs. 50; SD 10). Conclusion: Socioeconomic participation of persons with nonsevere hemophilia was similar to the general male population. Some participation outcomes for persons with severe hemophilia were reduced.

Validation of the pedHALshort and HALshort in Dutch children and adults with haemophilia.

INTRODUCTION: The Haemophilia Activities List (HAL) and paediatric HAL assess self-reported limitations in various daily activities. To reduce patient burden, shorter versions of the pedHAL (22 items) and HAL (18 items) have been developed. AIM: This study aimed to determine the agreement between the pedHAL/HALfull and pedHAL/HALshort and construct validity and internal consistency of the pedHAL/ HALshort in persons with haemophilia (PWH). METHODS: A cross-sectional secondary analysis of the Hemophilia in the Netherlands-6 national survey was performed. Adult and paediatric PWH completed the original pedHAL/HALfull , from which pedHAL/ HALshort were derived. Score differences between the original and short versions were calculated. Construct validity was studied by testing hypotheses regarding the relationship of the pedHAL/HALshort with the pedHAL/HALfull , Haemophilia & Exercise Project Test-Questionnaire (HEP-Test-Q), Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) and RAND 36-item Health Survey (RAND-36) (convergent/discriminant validity) as well as its ability to discriminate between subgroups (known-group validity). Internal consistency was assessed with Cronbach's α. RESULTS: We included 113 children (median 10y [range 4-17], 53% severe haemophilia) and 691 adults (median 51y [range 18-88], 35% severe). Scores of the pedHAL/HALfull and pedHAL/HALshort were similar with high correlations (>0.9). Construct validity was confirmed for the pedHAL/HALshort . The HALshort was able to discriminate between different disease severities and ages. Cronbach's α of the pedHAL/HALshort was 0.95-0.97. CONCLUSION: This study confirmed the agreement between the pedHAL/HALfull and the pedHAL/HALshort and the construct validity of the pedHAL/HALshort . The next step is to study construct validity of the pedHAL/HALshort when administered as short forms.

Connecting teachers' classroom instructions with children's metacognition and learning in elementary school.

Many children have difficulties with accurate self-monitoring and effective regulation of study, and this may cause them to miss learning opportunities. In the classroom, teachers play a key role in supporting children with metacognition and learning. The present study aimed to acquire insights into how teachers' cognitive and metacognitive strategy instruction, as well as teacher-directed and child-centered instructional practices are related to children's self-monitoring accuracy, regulation of study, and learning performance. Twenty-one teachers and 308 children (2nd and 4th grade elementary school) participated. Teachers instructed a secret code task, children had to learn the match between letters of the alphabet and corresponding symbols. Teachers were observed and audio-recordings were made of their instructions. Then, children were asked to (a) make restudy selections, (b) complete a test, and (c) self-monitor test performance. Although teachers both addressed cognitive and metacognitive strategies, they more often instructed children about cognitive strategies. Further, teaching practices were more often teacher-directed than child-centered. Although there were no relations between teachers' instructions for metacognitive strategies and children's outcome measures, teaching cognitive strategies was positively associated with children's performance and self-monitoring accuracy. However, teaching cognitive strategies did not predict effective restudy selections. Rather, child-centered instructions (i.e., giving children autonomy to regulate their own learning) positively predicted children's restudy, and further, children's self-monitoring was more accurate in classrooms where teachers more often used child-centered instructional practices. This seems to imply that not only the content of the instructions itself, but particularly the way these are given, affects children's metacognition.

Comparing metacognitive monitoring between native and non-native speaking primary school students.

Metacognitive monitoring is a significant predictor of academic achievement and is assumed to be related to language competencies. Hence, it may explain academic performance differences between native and non-native speaking students. We compared metacognitive monitoring (in terms of resolution) between native and non-native speaking fourth graders (~ 10 year olds) in two studies. In Study 1, we matched 30 native and 30 non-native speakers and assessed their monitoring in the context of a paired-associates task, including a recognition test and confidence judgements. Study 1 revealed that recognition and monitoring did not differ between native and non-native speaking children. In Study 2, we matched 36 native and 36 non-native speakers and assessed their monitoring with the same paired-associates task. Additionally, we included a text comprehension task with open-ended questions and confidence judgments. We replicated the findings of Study 1, suggesting that recognition and monitoring do not necessarily differ between native and non-native speakers. However, native speaking students answered more open-ended questions correctly than non-native speaking students did. Nevertheless, the two groups did not differ in monitoring their answers to open-ended questions. Our results indicate that native and non-native speaking children may monitor their metacognitive resolution equally, independent of task performance and characteristics. In conclusion, metacognitive monitoring deficits may not be the primary source of the academic performance differences between native and non-native speaking students.

A qualitative study on the experiences of haemophilia carriers before, during and after pregnancy.

INTRODUCTION: Haemophilia carriers (HCs) face considerable haemostatic and psychological challenges during reproduction. AIM: To explore the perspectives of HCs on healthcare in the current standard of haemophilia treatment during all reproductive phases: preconception, pregnancy, childbirth and the postpartum period. In addition, we examined the psychological impact of haemophilia during these phases. MATERIAL AND METHODS: Focus group discussions (FGDs) and semi-structured interviews were conducted with HCs in January/February 2020 until data saturation was reached. All sessions were recorded, transcribed verbatim and analysed by two independent researchers through thematic content analysis using MAXQDA® software. The results were then discussed within the research team until consensus was reached. The constructed themes were shared with and reviewed by the HCs. RESULTS: Fifteen HCs were included in three FGDs and four interviews. Five central themes were constructed: (1) communication by healthcare professionals, (2) lack of knowledge, (3) feeling insecure, (4) autonomy and (5) family experiences with haemophilia. Desired improvements in care mainly concerned counselling during preconception and pregnancy. This included timely access to comprehensive information during each consecutive phase, acceptance of HCs' choices by healthcare providers and healthcare tailored to the HC's family experience with haemophilia. CONCLUSIONS: In recent years, haemophilia treatment has seen major advances, which could impact general and reproductive care for HCs. HCs indicated that reproductive care would benefit from a more personal and informative approach. Healthcare professionals could use these insights to adapt their consultations to meet the needs of these women when they are preparing for having children.

Exploring psychometric properties of children' metacognitive monitoring.

Two independent data sets assessing children's metacognitive monitoring abilities were used to explore the psychometric properties of classical and often-used monitoring measures in primary school age. Theoretically, monitoring is an overarching skill that helps individuals evaluate task mastery, strategy use, and correctness of performance. Monitoring skills are increasingly targeted when addressing individual differences in scholastic achievement and intervention approaches to foster students' self-regulated learning early on. In such contexts, knowledge about central psychometric properties is essential. Results of both studies revealed high internal consistency of prospective and retrospective monitoring judgments. When equivalent item sets (in terms of item difficulty) were considered (Study 1), split-half reliabilities were also satisfying. However, analyses revealed that the monitoring judgments' reliability depends on the reliability of the first-order task (recognition memory test). Retesting children of Study 2 after six months revealed considerable fluctuations in the monitoring measures. Among the included monitoring measures, reliabilities of within-person correlations (Gammas) between performance and confidence and recognition response times and confidence were poorest. Results are discussed in the context of the underlying theoretical construct and implications for research and practice.

Validation of PROMIS Profile-29 in adults with hemophilia in the Netherlands.

BACKGROUND: The Patient-Reported Outcomes Measurement Information System (PROMIS) Profile-29 questionnaire is widely used worldwide, but it has not yet been validated in the Netherlands, nor in persons with hemophilia. OBJECTIVE: To validate the Dutch-Flemish version of the PROMIS-29 Profile v2.01 in adults with hemophilia. METHODS: Dutch males with hemophilia (all severities) completed questionnaires that contained sociodemographic and clinical characteristics, the PROMIS-29, RAND-36, and the Hemophilia Activities List (HAL). Structural validity of each subscale was assessed with confirmatory factor analysis (CFA). Internal consistency was calculated for each subscale with sufficient model fit in CFA. Construct validity was assessed by testing hypotheses about (1) correlations of each PROMIS-29 subscale with corresponding scales of RAND-36 and domains of HAL, and (2) mean differences in T-scores between subgroups with different hemophilia severities, self-reported joint impairment, and HIV infection status. We considered ≥75% of data in accordance with the hypotheses evidence for construct validity. RESULTS: In total, 770 persons with hemophilia participated in this cross-sectional study. CFA revealed sufficient structural validity for five subscales: Physical Function, Depression, Sleep Disturbance, Ability to Participate in Social Roles and Activities, and Pain Interference. Internal consistency was high and Cronbach's alpha ranged from 0.79 for Sleep Disturbance to 0.96 for Pain Interference. Differences between clinical subgroups were in the expected direction. Construct validity was confirmed for Physical Function, Anxiety, Depression, Fatigue, Sleep Disturbance, and Pain Intensity. CONCLUSION: This study revealed sufficient evidence for structural validity, internal consistency, and construct validity for most PROMIS Profile-29 subscales among people with hemophilia in the Netherlands.

Similar sports participation as the general population in Dutch persons with haemophilia; results from a nationwide study.

INTRODUCTION: Although sports participation is advocated in people with haemophilia (PWH), detailed data concerning sports participation in Dutch PWH is lacking. AIM: to assess sports participation in Dutch PWH (6-65 years) compared to the Dutch general population (GP). METHODS: Data from a nationwide, cross-sectional study in PWH were analysed. Sports participation (type, duration, frequency) was assessed by the Modifiable Activities Questionnaire (MAQ), limitations in activities using the (Paediatric) Haemophilia Activities List ((Ped)HAL). Sports in the two highest categories according to the National Hemophilia Foundation classification were considered high-risk sports. Groups were compared using Chi-square testing. RESULTS: A total of 524 Adult PWH (median age: 45 (IQR: 30-55); 37% severe) and 126 paediatric PWH (median age: 11 (IQR: 8-14); 52% severe) were included. Sports participation was higher in adults (70%) than the GP (58%) and similar to the GP in children (PWH: 68%, GP: 72%). High-risk sports participation decreased with age in PWH: from 65% (6-12 years) to 17% (50-65 years), which was also observed in the GP. Sports participation in children was independent of severity (non-severe: 67% vs. severe: 65%; P = 0.97), but not in adults (non-severe: 75%, severe: 62%; P < 0.01). Non-severe PWH played more high-risk sports than severe PWH: children at 65% vs. 48% (P = 0.05), adults at 25% vs. 15% (P = 0.07). DISCUSSION: These results suggest that sports participation in PWH was comparable to the GP. Sports participation was dependent of haemophilia severity in adults. Children were more involved in high-risk sports than adults. More studies on sports-related injury-risk are needed for adequate counselling.