Social participation of patients with hemophilia in the Netherlands

Blood ◽  
2008 ◽  
Vol 111 (4) ◽  
pp. 1811-1815 ◽  
Author(s):  
Iris Plug ◽  
Marjolein Peters ◽  
Eveline P. Mauser-Bunschoten ◽  
Arja de Goede-Bolder ◽  
Lily Heijnen ◽  
...  
Keyword(s):  
General Population ◽  
The Netherlands ◽  
Social Participation ◽  
Prophylactic Treatment ◽  
Full Time ◽  
Severe Hemophilia ◽  
Occupational Disability ◽  
Male Population ◽  
Number Of Patients ◽  
The 1960S

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.

Evidence of a Hemophilia Employment Gap: Comparing Data from CHESS US+ and the 2019 Current Population Survey

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 26-27
Author(s):  
Sohaib Asghar ◽  
Tom Burke ◽  
Natalia Misciattelli ◽  
Sharmila Kar ◽  
George Morgan ◽  
...  
Keyword(s):  
General Population ◽  
Labor Force ◽  
Labor Force Participation ◽  
Current Population Survey ◽  
Population Survey ◽  
Full Time ◽  
Severe Hemophilia ◽  
Current Population ◽  
The Us ◽  
Part Time

INTRODUCTION Severe hemophilia A (<1% normal FVIII activity) and B (<1% normal FIX activity) are congenital bleeding disorders characterized by uncontrolled bleeding, either spontaneously or in response to trauma or surgery. Recent commentary has identified a number of patient-important and patient-relevant outcomes that have been understudied, namely the challenges faced by people living with hemophilia to participate in the labor force. The socio-economic impact of hemophilia is comparatively less well understood than clinical outcomes and therapy-related costs. Under-employment and under-utilization have long-term consequences to individuals' job prospects and psychosocial health, as well as an economic cost to the society. The objective of the analysis is to compare labor market participation, among people with severe hemophilia from the US and the general population. This analysis draws on household data derived from the 2019 Current Population Survey (CPS), and on patient-reported data from a patient-centric study conducted in 2019 of people with severe hemophilia, in the US: the 'Cost of Severe Hemophilia Across the US: A Socioeconomic Survey' (CHESS US+). METHODS A patient-centric framework informed the design of CHESS US+ a retrospective (12 months prior to study enrollment), cross-sectional dataset of adults with severe hemophilia in the US. Conducted in 2019, the study used a patient-completed questionnaire to collect data on patient-relevant clinical, economic, and humanistic outcomes. This analysis examines labor market participation (full-time, part-time, unemployed), and corresponding general population data derived from the 2019 Current Population Survey (CPS). Data on the general population were sourced from the 2019 CPS 'Employment status of the civilian noninstitutional population'. Persons 'not in the labor force' in the 2019 CPS and retired persons in CHESS US+ were not included in the analysis. We present data on the civilian labor force, in CHESS US+ and in the 2019 CPS. Results are presented as mean (standard deviation) or N (%). RESULTS Of 356 patients profiled in the CHESS US+ study, 97 (27%) had severe hemophilia B and 257 (73%) had severe hemophilia A. Mean age and weight (kg) of the cohort was 34.99 (12.15) and 85.71 (22.81), respectively. The labor force participation rates of non-retired people with severe hemophilia in CHESS US+ (N = 340) and the general population (161,458) are described in Table 1. Examining aggregate data on employment status observed a higher proportion of people with severe hemophilia in part-time employment (24.4% vs. 15.7%). Differences in the labor force participation of people living with severe hemophilia compared to the general population were most pronounced in the full-time employment rate and the unemployment rate. Compared to 80.7% of the general population (Table 1), only 53.5% of people with severe hemophilia in CHESS US+ had a full-time job. Moreover, the unemployment rate (Table 1) in the 2019 CPS compared with the rate observed in CHESS US+ (3.7% vs. 22.1%) provides a stark contrast in the employment experiences of people living with severe hemophilia relative to the general population. CONCLUSIONS This analysis of CHESS US+ illustrates the impact of severe hemophilia on labor force participation. People with severe hemophilia were more likely than the general population to be unemployed, or in part-time employment. A notable contrast was observed in the rate of full-time employment and unemployment, among the general population compared to people living with severe hemophilia. These data illustrate the need to quantify the impact of hemophilia using a holistic approach that considers the cost of involuntary illness-related part-time and unemployment. Disclosures Asghar: HCD Economics: Current Employment. Burke:HCD Economics: Current Employment; F. Hoffmann-La Roche Ltd: Consultancy; University of Chester: Current Employment. Misciattelli:Freeline: Current Employment, Current equity holder in publicly-traded company. Kar:Freeline: Current Employment, Current equity holder in publicly-traded company. Morgan:HCD Economics: Current Employment; uniQure: Consultancy. O'Hara:F. Hoffmann-La Roche Ltd: Consultancy; HCD Economics: Current Employment, Current equity holder in private company.

scholarly journals Safety and Efficacy of New Moroctocog Alfa Drug (Octofactor) in Prophylactic Treatment in Adolescent Patients with Severe and Moderate Hemophilia a

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 4703-4703 ◽  
Author(s):  
Ekaterina Shiller ◽  
Vladimir Vdovin ◽  
Victor Petrov ◽  
Pavel Svirin ◽  
Tatiana Andreeva ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Prophylactic Treatment ◽  
Hemophilia A ◽  
Residual Activity ◽  
Severe Hemophilia ◽  
Efficacy Evaluation ◽  
Spontaneous Bleeding ◽  
On Demand ◽  
Number Of Patients ◽  
Bleeding Episodes

Abstract Efficacy and safety of a new domestically produced rFVIII-BDD (moroctocog alfa, Octofactor, CJSC "GENERIUM", Russia) was investigated in a controlled, open, prospective, multicenter clinical trial. After screening and a 4-days washout period 12 previously treated patients adolescents (age 12-18 years old) with severe hemophilia A (the activity of FVIII was less than 1%) were included in the clinical trial. The patients were given the moroctocog alfa as prophylactic treatment in a dose of 35±5 ME/kg 3 times per week during 21±1 weeks. Before participation in this clinical trial 2 pts had received treatment with another recombinant FVIII, 2 pts had therapy with pdFVIII and 8 pts had been treated with rFVIII and pdFVIII. The main criterion of drug efficacy was the incidence of spontaneous bleeding occurred within 48 hours after of the moroctocog alfa injection. The additional criteria were: · The severity of spontaneous bleeding occurred in 21 ± 1 week. · Number of injections needed for the one episode of bleeding according of its severity. · The total amount of drug administered over a period of prophylactic treatment and treatment "on demand". · The number of patients with severe hemophilia A with a residual activity of FVIII ≥1% in 48 hours after the injection on prophylactic therapy. During the follow up period (21±1 week) 17 bleeding episodes were registered, 2 of them (11,8%) were severe, 10 (58,8%) were moderate and 5 (29,4%) were mild (Tab.1). Number of bleeding episodes (spontaneous and traumatic) was 17 (1.55 in average). Number of spontaneous bleeding was 3 (17,6%), 1 of them was mild and 2 were moderate. The average number of injections that stop one bleeding episode was 1.7±0.8. The total amount of moroctocog alfa administered over a period was 1.502.000 ÌÅ for prophylactic treatment and 64.750 ÌÅ for "on demand" treatment. The number of patients with severe hemophilia A with a residual activity of FVIII ≥1% in 48 hours after injection on prophylactic therapy was 63,6% on visit 2, 90,09% on visit 3 and 81,1% on visit 4. The safety assessment was performed in 12 patients. There were 8 adverse events and 7 of them were not associated with drugs administration. There was one serious adverse effect, allergic reaction accompanied by arthralgia and cephalalgia. The patient was excluded from the trial without consequences for life and health. There were no infection transmissions and de novo inhibitor incident. The study showed that moroctocog alfa is effective and safe in prophylactic treatment and stopping of bleeding in adolescents with severe hemophilia A. Table 1. Efficacy evaluation Table 1. Efficacy evaluation Disclosures No relevant conflicts of interest to declare.

scholarly journals The prevalence of seasonal affective disorder in the netherlands: a prospective and retrospective study of seasonal mood variation in the general population

1999 ◽  
Vol 45 (8) ◽  
pp. 1013-1022 ◽  
Author(s):  
Peter Paul A Mersch ◽  
Hermine M Middendorp ◽  
Antoinette L Bouhuys ◽  
Domien G.M Beersma ◽  
Rutger H van den Hoofdakker
Keyword(s):  
Retrospective Study ◽  
General Population ◽  
The Netherlands ◽  
Affective Disorder ◽  
Seasonal Affective Disorder ◽  
Mood Variation

scholarly journals Test–retest reliability of the EQ-5D-5L and the reworded QOLIBRI-OS in the general population of Italy, the Netherlands, and the United Kingdom

2021 ◽  
Author(s):  
Di Long ◽  
Suzanne Polinder ◽  
Gouke J. Bonsel ◽  
Juanita A. Haagsma
Keyword(s):  
United Kingdom ◽  
General Population ◽  
The Netherlands ◽  
Web Based ◽  
Retest Reliability ◽  
The United Kingdom ◽  
Sum Score ◽  
Summary Index ◽  
Test Retest Reliability ◽  
Eq Vas

Abstract Purpose To assess the test–retest reliability of the EQ-5D-5L and the reworded Quality of Life After Traumatic Brain Injury Overall Scale (QOLIBRI-OS) for the general population of Italy, the Netherlands, and the United Kingdom (UK). Methods The sample contains 1864 members of the general population (aged 18–75 years) of Italy, the Netherlands, and the UK who completed a web-based questionnaire at two consecutive time points. The survey included items on gender, age, level of education, occupational status, household annual income, chronic health status, and the EQ-5D-5L and reworded QOLIBRI-OS instrument. Test–retest reliability of the EQ-5D-5L dimensions, EQ-5D-5L summary index, EQ VAS, reworded QOLIBRI-OS dimensions and reworded QOLIBRI-OS level sum score was examined by Gwet’s Agreement Coefficient (Gwet’s AC) and Intraclass Correlation Coefficient (ICC). Results Gwet’s AC ranged from 0.64 to 0.97 for EQ-5D-5L dimensions. The ICC ranged from 0.73 to 0.84 for the EQ-5D-5L summary index and 0.61 to 0.68 for EQ VAS in the three countries. Gwet’s AC ranged from 0.35 to 0.55 for reworded QOLIBRI-OS dimensions in the three countries. The ICC ranged from 0.69 to 0.77 for reworded QOLIBRI-OS level sum score. Conclusion Test–retest reliability of the EQ-5D-5L administered via a web-based questionnaire was substantial to almost perfect for the EQ-5D-5L dimensions, good for EQ-5D-5L summary index, and moderate for the EQ VAS. However, test–retest reliability was less satisfactory for the reworded QOLIBRI-OS. This indicates that the web-based EQ-5D-5L is a reliable instrument for the general population, but further research of the reworded QOLIBRI-OS is required.

scholarly journals Routine clinical care data from thirteen cardiac outpatient clinics: design of the Cardiology Centers of the Netherlands (CCN) database

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sophie H. Bots ◽  
Klaske R. Siegersma ◽  
N. Charlotte Onland-Moret ◽  
Folkert W. Asselbergs ◽  
G. Aernout Somsen ◽  
...  
Keyword(s):  
Risk Factors ◽  
General Practitioner ◽  
Data Collection ◽  
The Netherlands ◽  
Strong Base ◽  
Daily Care ◽  
Cardiac Symptoms ◽  
Number Of Patients ◽  
Patient Groups

Abstract Background Despite the increasing availability of clinical data due to the digitalisation of healthcare systems, data often remain inaccessible due to the diversity of data collection systems. In the Netherlands, Cardiology Centers of the Netherlands (CCN) introduced “one-stop shop” diagnostic clinics for patients suspected of cardiac disease by their general practitioner. All CCN clinics use the same data collection system and standardised protocol, creating a large regular care database. This database can be used to describe referral practices, evaluate risk factors for cardiovascular disease (CVD) in important patient subgroups, and develop prediction models for use in daily care. Construction and content The current database contains data on all patients who underwent a cardiac workup in one of the 13 CCN clinics between 2007 and February 2018 (n = 109,151, 51.9% women). Data were pseudonymised and contain information on anthropometrics, cardiac symptoms, risk factors, comorbidities, cardiovascular and family history, standard blood laboratory measurements, transthoracic echocardiography, electrocardiography in rest and during exercise, and medication use. Clinical follow-up is based on medical need and consisted of either a repeat visit at CCN (43.8%) or referral for an external procedure in a hospital (16.5%). Passive follow-up via linkage to national mortality registers is available for 95% of the database. Utility and discussion The CCN database provides a strong base for research into historically underrepresented patient groups due to the large number of patients and the lack of in- and exclusion criteria. It also enables the development of artificial intelligence-based decision support tools. Its contemporary nature allows for comparison of daily care with the current guidelines and protocols. Missing data is an inherent limitation, as the cardiologist could deviate from standardised protocols when clinically indicated. Conclusion The CCN database offers the opportunity to conduct research in a unique population referred from the general practitioner to the cardiologist for diagnostic workup. This, in combination with its large size, the representation of historically underrepresented patient groups and contemporary nature makes it a valuable tool for expanding our knowledge of cardiovascular diseases. Trial registration: Not applicable.

scholarly journals How Far Away Are World Economies from Circularity: Assessing the Capacity of Circular Economy Policy Packages in the Operation of Raw Materials and Industrial Wastes

2021 ◽  
Vol 13 (8) ◽  
pp. 4394
Author(s):  
Margarita Ignatyeva ◽  
Vera Yurak ◽  
Alexey Dushin ◽  
Vladimir Strovsky ◽  
Sergey Zavyalov ◽  
...  
Keyword(s):  
The Netherlands ◽  
Waste Management ◽  
South Korea ◽  
Circular Economy ◽  
Raw Materials ◽  
Industrial Wastes ◽  
New Guidelines ◽  
The 1960S ◽  
Degree Level ◽  
The Eu

Nowadays, circular economy (CE) is on the agenda, however, this concept of closed supply chains originated in the 1960s. The current growing quantity of studies in this area accounts for different discourses except the holistic one, which mixes both approaches—contextual and operating (contextual approach utilizes the thorough examination of the CE theory, stricture of the policy, etc.; the operating one uses any kind of statistical data)—to assess the capacity of circular economy regulatory policy packages (CERPP) in operating raw materials and industrial wastes. This article demonstrates new guidelines for assessing the degree level of capacity (DLC) of CERPPs in the operation of raw materials and industrial wastes by utilizing the apparatus of the fuzzy set theory. It scrupulously surveys current CERPPs in three regions: the EU overall, Finland and Russia; and assesses for eight regions—the EU overall, Finland, Russia, China, Greece, France, the Netherlands and South Korea—the DLC of CERPPs in operating raw materials and industrial wastes. The results show that EU is the best in CE policy and its CERPP is 3R. The following are South Korea and China with the same type of CERPP. Finland, France and the Netherlands have worse results than EU with the type of CERPP called “integrated waste management” because of the absence of a waste hierarchy (reduce, recover, recycle). Russia closes the list with the type of CERPP “basic waste management”.

Australia and Indonesian Independence

1967 ◽  
Vol 8 (2) ◽  
pp. 226-239 ◽  
Author(s):  
W. J. Hudson
Keyword(s):  
The Netherlands ◽  
United Nations ◽  
Colonial Power ◽  
South West ◽  
South West Africa ◽  
The United Nations ◽  
Southern Rhodesia ◽  
The 1960S ◽  
The One ◽  
United Nations Charter

Relations between Australia and Indonesia became strained within months of Indonesia's attainment of independence, deteriorating as conflict developed first on the question of West Irian and then as a result of Indonesia's hostility towards Malaysia. For many years, it seemed ironical that Australia should have played a major part in the emergence of a neighbour whose external policies and internal trends endangered rather than safeguarded Australian interests. But there is more involved here than historical irony in the context of Australian-Indonesian relations. Sufficient time has now elapsed for Australian policy on the Indonesian independence question to be seen in the wider context of the whole postwar phenomenon of decolonisation. For it is not merely of interest that Australia should have assisted neighbouring Asian rebels against a European colonial Power (remembering that Australia herself was, and is, a European colonial Power) and should then have been embarrassed by the activities of the rebels coming to office. It is of greater interest that, of the immense number of colonial issues anxiously engaging the attention of international society in the 1940s and 1950s, the years which saw the virtual demise of western colonialism, this was the one issue on which Australia took up the rebel cause. Throughout this period and irrespective of the complexion of the parties in power in Canberra, Australia persistently jeopardised her regional objective of friendly relations with anti-colonial Asia by opposing strongly and, at times, bitterly the anti-colonial cause in the United Nations. If nothing else, the United Nations has provided a forum in which each year Australia and other members have been forced to declare themselves on colonial questions. And, until the 1960s when Australia switched policy, Australia fought against all the anti-colonial Powers' largely successful attempts to have developed a system of international control over colonies under the authority of Chapter XI (“Declaration Regarding Non-Self-Governing Territories”) of the United Nations charter, to tighten the trusteeship system of supervision erected under Chapters XII and XIII of the charter, and to involve the United Nations in particular disputes so as to meet alleged threats to peace — all of them being attempts, however indirectly, to hasten the attainment of independence by dependent territories. Thus, Australia supported South Africa on South-West Africa, the Netherlands on West New Guinea, the British on Southern Rhodesia and Oman, the Portuguese on their African territories, the French on Morocco, Tunisia and Algeria. But Australia opposed the Netherlands on the Indonesian question.

Industrial archaeology: a thematic or a period discipline?

Antiquity ◽  
1990 ◽  
Vol 64 (243) ◽  
pp. 275-282 ◽  
Author(s):  
Marilyn Palmer
Keyword(s):  
Industrial Revolution ◽  
Historical Period ◽  
Full Time ◽  
Industrial Archaeology ◽  
Part Time ◽  
1960S And 1970S ◽  
The 1960S ◽  
University Expansion ◽  
Ancient Monument ◽  
The 19Th Century

A thematic or a period discipline?Industrial archaeology has generally been defined as a thematic discipline, concerned with only one aspect of man’s past activity. Although the term ‘archaeology of industry’ was used in the 19th century, it was Michael Rix who used the phrase ‘industrial archaeology’ in print for the first time (Rix 1955). He later defined industrial archaeology as ‘recording, preserving in selected cases and interpreting the sites and structures of early industrial activity, particularly the monuments of the Industrial Revolution’ (Rix 1967: 5). The emphasis on the term ‘industrial monument’ followed a need to define an industrial class of Ancient Monument so that some examples would be scheduled. Industrial archaeology, then, grew from the need to record and preserve standing structures threatened with demolition rather than an inherent desire to understand more about the historical period of the monuments. It was perhaps felt that understanding of the industrial revolution period was more readily arrived at by other means, particularly written historical evidence. During the ‘rescue’ years of the 1960s and 1970s, archaeology was one of the two areas of fastest university expansion and very popular in extra-mural teaching. But none of the archaeology departments took up industrial archaeology, although many of the extra-mural departments did; it is largely as a part-time, amateur interest that industrial archaeology has flourished ever since. The author’s post as an industrial archaeologist in the Leicester archaeology department is one of the first occasions on which the specialism has been given a place in full-time undergraduate archaeology courses.

Sign in / Sign up

Export Citation Format

Share Document