Publications by authors named "Cees Smit"

17 Publications

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

J Thromb Haemost 2021 Jul 10. Epub 2021 Jul 10.

Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, 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.
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http://dx.doi.org/10.1111/jth.15454DOI Listing
July 2021

Seventy years of haemophilia care: A personal perspective.

Authors:
Cees Smit

Vox Sang 2021 Jun 22. Epub 2021 Jun 22.

Department of epidemiology, Leiden University Medical Center (LUMC), Hoofddorp, The Netherland.

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http://dx.doi.org/10.1111/vox.13173DOI Listing
June 2021

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

Haemophilia 2021 Sep 19;27(5):876-885. Epub 2021 Jun 19.

Van Creveldkliniek, University Medical Center Utrecht, Utrecht, The Netherlands.

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.
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http://dx.doi.org/10.1111/hae.14366DOI Listing
September 2021

Health and treatment outcomes of patients with hemophilia in the Netherlands, 1972-2019.

J Thromb Haemost 2021 Jun 12. Epub 2021 Jun 12.

Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, the Netherlands.

Introduction: We conducted six cross-sectional nationwide questionnaire studies among all patients with hemophilia in the Netherlands from 1972 until 2019 to assess how health outcomes have changed, with a special focus on patients >50 years of age.

Methods: Data were collected on patient characteristics, treatment, (joint) bleeding, joint impairment, hospitalizations, human immunodeficiency virus and hepatitis C infections, and general health status (RAND-36).

Results: In 2019, 1009 patients participated, of whom 48% had mild, 15% moderate, and 37% severe hemophilia. From 1972 to 2019, the use of prophylaxis among patients with severe hemophilia increased from 30% to 89%. Their median annual bleeding rate decreased from 25 to 2 bleeds. Patients with severe hemophilia aged <16 years reported joint impairment less often over time, but in those aged >40 years joint status did not improve. In 2019, 5% of all 1009 patients were positive for the human immunodeficiency virus. The proportion of patients with an active hepatitis C infection drastically decreased from 45% in 2001 to 2% in 2019 due to new anti-hepatitis C treatment options. Twenty-five percent had significant liver fibrosis even after successful therapy. Compared to the general male population, patients aged >50 years reported much lower scores on the RAND-36, especially on physical functioning.

Discussion/conclusion: Our study shows that increased use of prophylactic treatment and effective hepatitis C treatment have improved joint health and nearly eradicated hepatitis C infection in patients with hemophilia in the Netherlands. However, patients still suffer from hemophilia-related complications, especially patients aged >50 years.
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http://dx.doi.org/10.1111/jth.15424DOI Listing
June 2021

Patient-relevant health outcomes for hemophilia care: Development of an international standard outcomes set.

Res Pract Thromb Haemost 2021 May 6;5(4):e12488. Epub 2021 Mar 6.

Department of Clinical Epidemiology Leiden University Medical Center Leiden The Netherlands.

Background: Patient-relevant health outcomes for persons with hemophilia should be identified and prioritized to optimize and individualize care for persons with hemophilia. Therefore, an international group of persons with hemophilia and multidisciplinary health care providers set out to identify a globally applicable standard set of health outcomes relevant to all individuals with hemophilia.

Methods: A systematic literature search was performed to identify possible health outcomes and risk adjustment variables. Persons with hemophilia and multidisciplinary health care providers were involved in an iterative nominal consensus process to select the most important health outcomes and risk adjustment variables for persons with hemophilia. Recommendations were made for outcome measurement instruments.

Results: Persons with hemophilia were defined as all men and women with an X-linked inherited bleeding disorder caused by a deficiency of coagulation factor VIII or IX with plasma activity levels <40 IU/dL. We recommend collecting the following 10 health outcomes at least annually, if applicable: (i) cure, (ii) impact of disease on life expectancy, (iii) ability to engage in normal daily activities, (iv) severe bleeding episodes, (v) number of days lost from school or work, (vi) chronic pain, (vii) disease and treatment complications, (viii) sustainability of physical functioning, (ix) social functioning, and (x) mental health. Validated clinical as well as patient-reported outcome measurement instruments were endorsed. Demographic factors, baseline clinical factors, and treatment factors were identified as risk-adjustment variables.

Conclusion: A consensus-based international set of health outcomes relevant to all persons with hemophilia, and corresponding measurement instruments, was identified for use in clinical care to facilitate harmonized longitudinal monitoring and comparison of outcomes.
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http://dx.doi.org/10.1002/rth2.12488DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8117824PMC
May 2021

Adherence to prophylaxis and its association with activation of self-management and treatment satisfaction.

Haemophilia 2021 Jul 21;27(4):581-590. Epub 2021 May 21.

Van Creveldkliniek, University Medical Center Utrecht, University Utrecht, Utrecht, the Netherlands.

Introduction: Prophylactic replacement therapy (prophylaxis) in patients with haemophilia (PWH) requires lifelong, frequent (self)infusions. Prophylaxis effectiveness depends on adherence, and the drivers of treatment adherence among PWH are unclear.

Aim: To quantify prophylaxis adherence and associations between adherence and patients' treatment attitudes and satisfaction in a large cohort of children and adults with haemophilia.

Methods: In a nationwide, cross-sectional, questionnaire-based study, PWH with complete information currently using prophylaxis were selected. Validated Hemophilia Regimen Treatment Adherence Scale-Prophylaxis (VERITAS-Pro; normalised score range: 0-100, optimum 0) measured treatment adherence; the Patient Activation Measure (PAM-13; total score range 0-100, optimum 100) measured activation of self-management; Hemophilia Patient Satisfaction Scale (Hemo-Sat; range 0-100, optimum 0) measured treatment satisfaction. Groups were compared according to age (children: <12 years; adolescents: 12-18 years; adults >18 years) and adherence levels using non-parametric tests, and correlations were assessed using Spearman's rho.

Results: Among 321 participants (median age 33 years, interquartile range [IQR]:15-54 years), adherence was high (median VERITAS-Pro total score 17, 89% adherent) but worsened with age, with median scores of 5, 14 and 20 in children, adolescents, adults, respectively (p < .001). Attitudes towards treatment (median 66 vs. 68) participants and treatment satisfaction (12 vs. 10) were similar between adherent and non-adherent patients. The VERITAS-Pro total score was moderately correlated with PAM-13 (r = .41) but not with Hemo-Sat (r = -.11).

Discussion: Prophylaxis adherence was high (89%) but decreased significantly with age and was not correlated with treatment attitude or treatment satisfaction.
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http://dx.doi.org/10.1111/hae.14333DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8362086PMC
July 2021

Mortality, life expectancy, and causes of death of persons with hemophilia in the Netherlands 2001-2018.

J Thromb Haemost 2021 03 18;19(3):645-653. Epub 2020 Dec 18.

Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, the Netherlands.

Background: Treatment of patients with hemophilia has advanced over the past decades, but it is unknown whether this has resulted in a normal life expectancy in the Netherlands.

Objective: This observational cohort study aimed to assess all-cause and cause-specific mortality in patients with hemophilia in the Netherlands between 2001 and 2018 and to compare mortality and life expectancy with previous survival assessments from 1973 onward.

Patients/methods: All 1066 patients with hemophilia who participated in a nationwide survey in 2001 were followed until July 2018.

Results: Information on 1031 individuals (97%) was available, of whom 142 (14%) deceased during follow-up. Compared with the general Dutch male population, mortality of patients with hemophilia was still increased (standardized mortality ratio: 1.4, 95% confidence interval: 1.2-1.7). Intracranial bleeding and malignancies were the most common causes of death. Estimated median life expectancy of patients with hemophilia was 77 years, 6 years lower than the median life expectancy of the general Dutch male population (83 years). Over the past 45 years, death rates of patients with hemophilia have consistently decreased, approaching the survival experience of the general population. Over the past decades, mortality due to human immunodeficiency virus and hepatitis C virus infections has decreased, death due to intracranial hemorrhages has increased, and death due to ischemic heart disease has remained consistently low over time.

Conclusions: Survival in patients with hemophilia in the Netherlands has improved over time but is still lower than that of the general population.
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http://dx.doi.org/10.1111/jth.15182DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7986360PMC
March 2021

Patient Perspectives on Novel Treatments in Haemophilia: A Qualitative Study.

Patient 2020 04;13(2):201-210

Department of Clinical Epidemiology, Leiden University Medical Center, Postzone C7-P, P.O. Box 9600, 2300 RC, Leiden, The Netherlands.

Background And Objective: New treatments for haemophilia are under development or entering the market, including extended half-life products, designer drugs and gene therapy, thereby increasing treatment options for haemophilia. It is currently unknown how people with haemophilia decide whether to switch to a new treatment. Therefore, the objective of this study was to explore what factors may play a role when Dutch patients and parents of boys with moderate or severe haemophilia make decisions about whether to switch to a different treatment, and how disease and treatment characteristics may affect these decisions. This may aid clinical teams in tailored information provision and shared decision making.

Methods: We conducted interviews among adults with moderately severe or severe haemophilia and parents of young boys with severe haemophilia. We aimed to include participants from a variety of backgrounds in terms of involvement in the haemophilia community, age, treatment centre and treatments. Participants were recruited through the Netherlands Haemophilia Society and a haemophilia treatment centre. Semi-structured interviews were recorded and transcribed verbatim. Thematic content analysis was used to analyse the data.

Results: Twelve people with haemophilia and two mothers of boys with haemophilia were included. In general, participants reported to be satisfied with their current treatment. However, they considered ease of use of the medication (fewer injections, easier handling, alternative administration) an added value of new treatments. Participants were aware of the high cost of coagulation factor products and some expressed their concern about the Netherlands Haemophilia Society's long-term willingness to pay for current and novel treatments, especially for increased usage due to high-risk activities. Participants also expressed their concerns about the short- and long-term safety of new treatments and believed the effects of gene therapy were not yet fully understood. Participants expected their treatment team to inform them when a particular new treatment would be suitable for them.

Conclusions: With the number of treatment options set to increase, it is important for healthcare providers to be aware of how patient experiences shape patients' decisions about new therapies.
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http://dx.doi.org/10.1007/s40271-019-00395-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7075838PMC
April 2020

Patients to learn from: on the need for systematic integration of research and care in academic health care.

J Clin Transl Res 2018 Dec 14;3(Suppl 3):401-406. Epub 2017 Sep 14.

Radboud Biobank, Radboud university medical center, Nijmegen, the Netherlands.

Patients suffering from rare, extreme or extremely complex sets of symptoms have something to expect from efforts to improve care through research. Biomedical research and care have often been approached as distinct worlds which are and should be only loosely connected. For observational research focusing on data drawn from real-world settings, however, that approach is found wanting. Integrating research and care responsibly is the main challenge instead. Integrated IT infrastructures facilitating Personalized medicine and Big Data are crucial components of a learning health care system, in which patients regularly play a double role: as individuals to be treated and as cases to learn from. Drawing on the example of the Dutch Parelsnoer Institute (PSI), a national biobanking and IT infrastructure integrated with clinical care procedures, this article outlines the reforms that are needed. Systematic integration of research and care offers a promising avenue, provided that a number of conditions are met: data and IT infrastructures will require overhauls in order to facilitate secure, high-quality data integration between research and care; institutional focus is needed to bring patient populations and expertise together; ethical frameworks and approaches for integrating research and care responsibly require further elaboration; clinical procedures and professional responsibilities may need to be adapted in order to accommodate research requirements in clinical processes; and involvement of patients and other stakeholders in design and research priority setting is needed to further the goals of real-world and patient relevance.

Relevance For Patients: Integrating research and care in academic medicine in a more systematic fashion offers a promising perspective to current and future patients. In order to live up to these promises, research and care should be integrated more systematically in academic health science, with patients being included as research participants by default. Data and tissue infrastructures and facilities can provide a platform for doing so. At the same time, many issues remain to be settled. New ethical ways and means for protecting and respecting patient-participants in such a double role are also needed in this respect. In this way a deeper transformation is at stake as well: a change towards a setting in which patients fully take center stage in debate and action on the future of biomedicine.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6412601PMC
December 2018

The impact of non-response bias due to sampling in public health studies: A comparison of voluntary versus mandatory recruitment in a Dutch national survey on adolescent health.

BMC Public Health 2017 03 23;17(1):276. Epub 2017 Mar 23.

Psychology, Health & Technology, University of Twente, Enschede, the Netherlands.

Background: In public health monitoring of young people it is critical to understand the effects of selective non-response, in particular when a controversial topic is involved like substance abuse or sexual behaviour. Research that is dependent upon voluntary subject participation is particularly vulnerable to sampling bias. As respondents whose participation is hardest to elicit on a voluntary basis are also more likely to report risk behaviour, this potentially leads to underestimation of risk factor prevalence. Inviting adolescents to participate in a home-sent postal survey is a typical voluntary recruitment strategy with high non-response, as opposed to mandatory participation during school time. This study examines the extent to which prevalence estimates of adolescent health-related characteristics are biased due to different sampling methods, and whether this also biases within-subject analyses.

Methods: Cross-sectional datasets collected in 2011 in Twente and IJsselland, two similar and adjacent regions in the Netherlands, were used. In total, 9360 youngsters in a mandatory sample (Twente) and 1952 youngsters in a voluntary sample (IJsselland) participated in the study. To test whether the samples differed on health-related variables, we conducted both univariate and multivariable logistic regression analyses controlling for any demographic difference between the samples. Additional multivariable logistic regressions were conducted to examine moderating effects of sampling method on associations between health-related variables.

Results: As expected, females, older individuals, as well as individuals with higher education levels, were over-represented in the voluntary sample, compared to the mandatory sample. Respondents in the voluntary sample tended to smoke less, consume less alcohol (ever, lifetime, and past four weeks), have better mental health, have better subjective health status, have more positive school experiences and have less sexual intercourse than respondents in the mandatory sample. No moderating effects were found for sampling method on associations between variables.

Conclusions: This is one of first studies to provide strong evidence that voluntary recruitment may lead to a strong non-response bias in health-related prevalence estimates in adolescents, as compared to mandatory recruitment. The resulting underestimation in prevalence of health behaviours and well-being measures appeared large, up to a four-fold lower proportion for self-reported alcohol consumption. Correlations between variables, though, appeared to be insensitive to sampling bias.
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http://dx.doi.org/10.1186/s12889-017-4189-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5363011PMC
March 2017

Personal reflections of a patient representative in an appraisal committee.

Authors:
Cees Smit

Patient 2015 Feb;8(1):5-10

, Hoofddorp, The Netherlands,

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http://dx.doi.org/10.1007/s40271-014-0086-8DOI Listing
February 2015

Integrating evidence on patient preferences in healthcare policy decisions: protocol of the patient-VIP study.

Implement Sci 2013 Jun 10;8:64. Epub 2013 Jun 10.

Department of Clinical Epidemiology and Medical Technology Assessment, Maastricht University Medical Centre, P.O. Box 5800, 6202 AZ, Maastricht, the Netherlands.

Background: Despite a strong movement towards active patient involvement in healthcare policy decisions, systematic and explicit consideration of evidence of this research on patient preferences seems limited. Furthermore, little is known about the opinions of several stakeholders towards consideration of research evidence on patient preferences in healthcare policy decisions. This paper describes the protocol for an explorative study on the integration of research on patient preferences in healthcare policy decisions. The study questions: to what extent research evidence on patient preferences is considered in current procedures for healthcare policy decisions; opinions of stakeholders regarding the integration of this type of evidence in healthcare policy decisions; and what could be a decision framework for the integration of such research evidence in healthcare policy decisions.

Methods/design: The study is divided in three sub-studies, predominantly using qualitative methods. The first sub-study is a scoping review in five European countries to investigate whether and how results of research on patient preferences are considered in current procedures for coverage decisions and clinical practice guideline development. The second sub-study is a qualitative study to explore the opinions of stakeholders with regard to the possibilities for integrating evidence on patient preferences in the process of healthcare decision-making in the Netherlands. The third sub-study is the development of a decision framework for research on patient preferences. The framework will consist of: a process description regarding the place of evidence on patient preferences in the decision-making process; and a taxonomy describing different terminologies and conceptualisations of 'preferences' and an overview of existing methodologies for investigating preferences. The concept framework will be presented to and discussed with experts.

Discussion: This study will create awareness regarding the existence and potential value of research evidence on patient preferences for healthcare policy decision-making and provides insight in the methods for investigating patient preferences and the barriers and facilitators for integration of such research in healthcare policy decisions. Results of the study will be useful for researchers, clinical practice guideline developers, healthcare policy makers, and patient representatives.
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http://dx.doi.org/10.1186/1748-5908-8-64DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3686695PMC
June 2013

[Crucial role of patients in biobanking: national and international examples].

Ned Tijdschr Geneeskd 2011 ;155:A2968

Vereniging Samenwerkende Ouder- en Patiëntenorganisaties, Soest.

Biobanks are important for biomedical research into human diseases. Research physicians are often in need of human tissue and cells to conduct their research. However, they are often faced with the challenge of obtaining samples from a sufficient number of patients. Collaborating with patient organizations--especially for rare diseases--can lead to surprising results. The efforts of patient organizations can be crucial since they are well positioned to bring together patients and their samples, to initiate collaboration and share data for research and to find ways of generating long-term funding for research and biobanks.
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September 2011

Impact of a technological disaster on young children: a five-year postdisaster multiinformant study.

J Trauma Stress 2009 Dec;22(6):516-24

Academic Medical Centre, Department of Child and Adolescent Psychiatry/de Bascule, Amsterdam, the Netherlands.

Children exposed to a technological disaster during an understudied part of the lifespan, preschool age and early middle childhood, were assessed in a 5-year follow-up regarding mental health problems, anxiety disorder symptoms, depressive symptoms, physical symptoms, and posttraumatic stress symptoms. Exposed children and their parents (n = 264) reported significantly more problems than controls (n = 515). The differences were greater for conduct problems (including hyperactivity) and physical symptoms, than for anxiety and depression. The long-term effects of a technological disaster on children of pre-school age at exposure appear to differ from those in children, who were victimized at a later age. This may reflect interference with completion of specific developmental tasks.
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http://dx.doi.org/10.1002/jts.20461DOI Listing
December 2009

Social participation of patients with hemophilia in the Netherlands.

Blood 2008 Feb 6;111(4):1811-5. Epub 2007 Nov 6.

Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.

The introduction of replacement therapy in the 1960s has improved medical and social circumstances gradually. The availability of prophylactic treatment has further increased the possibilities of a "normal" life for patients with hemophilia. We examined whether social participation and health-related quality of life (HRQol) of today's hemophilia patients differs from the general male population. There were a total of 721 participants in the Hemophilia in the Netherlands 5 study (HiN-5 study) ages 16 to 64 years. Patients with severe hemophilia participated less in full-time work compared with the general population. Occupational disability was reported by 35% of patients with severe hemophilia between ages 31 and 64 years, compared with 9% in the general population. HRQol of patients with severe hemophilia between ages 31 and 64 years was lower than of the general population. The differences with the general population in HRQol were least pronounced for patients between ages 16 and 30 years. Despite major improvements in treatment during the last decades, patients with hemophilia are still less involved in full-time paid work and suffer more from occupational disability than men from the general population. After the introduction of prophylactic treatment, the number of patients who are occupationally disabled is reduced.
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http://dx.doi.org/10.1182/blood-2007-07-102202DOI Listing
February 2008

School performance and social-emotional behavior of primary school children before and after a disaster.

Pediatrics 2006 Nov;118(5):e1311-20

Pallas, Health Research and Consultancy, Patrice Lumumbastraat 5, 3065 EK Rotterdam, The Netherlands.

Objectives: The purpose of this work was to evaluate the cognitive and social-emotional consequences in a general population of primary school children affected by the firework disaster in Enschede, The Netherlands, on May 13, 2000. The explosions caused tremendous damage in the surrounding neighborhood. Twenty-two people immediately died and >1000 were injured.

Methods: This retrospective study assessed school performance and social-emotional behavior before and up to 3 years after the disaster. Objectively measured school test results in spelling and arithmetic/mathematics and multi-informant social-emotional behavioral assessments were compared between exposed and nonexposed primary school children. Multivariate logistic-regression was used to assess the relationship between exposure and cognitive and social emotional functioning.

Results: On school performances, the children exposed to the disaster performed over a period of 3 years after the disaster as good as or better than classmates, controls, and a national reference population. Shortly after the disaster, exposed children even seemed to have better school test results than nonexposed children. Two to 3 years after the disaster, a significant effect of disaster exposure was found on social-emotional behavior. Problematic behavior was reported by teachers, parents, and the school doctor.

Conclusions: This study demonstrates a limited influence of disaster exposure on school performance in primary school children. This study also shows that teachers and youth health care practitioners especially should be aware of children starting school several years after a disaster. Although very young at the time of a disaster (1-4 years of age), they may experience disaster-related problems.
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http://dx.doi.org/10.1542/peds.2005-2781DOI Listing
November 2006

Thirty years of hemophilia treatment in the Netherlands, 1972-2001.

Blood 2004 Dec 12;104(12):3494-500. Epub 2004 Aug 12.

Leiden University Medical Center, Clinical Epidemiology and the Thrombosis and Hemostasis Research Center, Leiden, The Netherlands.

Since the introduction of replacement therapy in the early 1960s by the infusion of plasma-derived factor VIII and IX preparations, important changes have occurred for hemophilia patients. We studied the medical and social developments over 30 years of hemophilia treatment. Since 1972, 5 cross-sectional national postal surveys among all hemophilia patients in the Netherlands were performed, the latest in 2001. The prestructured questionnaires included items on treatment, the presence of inhibitory antibodies against factor VIII or IX, the annual number of bleeding episodes, use of inpatient hospital care, and hepatitis C and HIV infections. Response rate in 2001 was 70%. Young patients (<16 years) with severe hemophilia showed the largest increase in use of prophylaxis, from 34% in 1972 to 86% in 2001. The occurrence of hemorrhages has gradually decreased. Hospital admissions decreased from 47% of all patients in 1972 to 18% in 2001. Our study shows that the treatment of patients with severe hemophilia in the Netherlands has focused on the use of prophylactic treatment, especially in children. This has resulted in a decrease in bleeding frequency and an improvement of the medical and social circumstances of patients.
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http://dx.doi.org/10.1182/blood-2004-05-2008DOI Listing
December 2004
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