A case study of haemoglobinopathy screening in the Netherlands: witnessing the past, lessons for the future.

Objectives: In 2007 neonatal screening (NNS) was expanded to include screening for sickle cell disease (SCD) and beta-thalassaemia. Up until that year no formal recommendations for haemoglobinopathy (carrier) screening existed in the Netherlands. Although it has been subject to debate in the past, preconceptional and prenatal haemoglobinopathy carrier screening are not part of routine healthcare in the Netherlands.

Feasibility of preconception screening for thalassaemia in Indonesia: exploring the opinion of Javanese mothers.

Background: Thalassaemia has become a major public health issue in Indonesia. It has been estimated that up to 10% of the population carries a gene associated with beta-thalassaemia. Currently, there is no formal recommendation for thalassaemia screening.

Raising awareness of carrier testing for hereditary haemoglobinopathies in high-risk ethnic groups in the Netherlands: a pilot study among the general public and primary care providers.

Background: In the Netherlands no formal recommendations exist concerning preconceptional or antenatal testing for carriership of hereditary haemoglobinopathies. Those at highest risk may be unaware of the possibility of carrier screening. While universal newborn screening has recently been introduced, neither preconceptional nor antenatal carrier testing is routinely offered by health care services to the general public.

Facilitating the use of COBRA combination therapy in early rheumatoid arthritis: a pilot implementation study.

Objective: COBRA combination therapy is well known and has uncontested efficacy in the treatment of rheumatoid arthritis (RA). However, it is infrequently applied in Dutch clinical practice. Based on qualitative research on opinions of physicians and patients towards COBRA therapy, our study describes the development and pilot testing of an implementation package to facilitate prescription and use of COBRA therapy in early RA.

Testing the children: do non-genetic health-care providers differ in their decision to advise genetic presymptomatic testing on minors? A cross-sectional study in five countries in the European Union.

Background: Within Europe many guidelines exist regarding the genetic testing of minors. Predictive and presymptomatic genetic testing of minors is recommended for disorders for which medical intervention/preventive measures exist, and for which early detection improves future medical health.

Aim: This study, which is part of the larger 5th EU-framework "genetic education" (GenEd) study, aimed to evaluate the self-reported responses of nongenetic health-care providers in five different EU countries (Germany, France, Sweden, the United Kingdom, and the Netherlands) when confronted with a parent requesting presymptomatic testing on a minor child for a treatable disease.

Three-month follow-up of Western and non-Western participants in a study on preconceptional ancestry-based carrier couple screening for cystic fibrosis and hemoglobinopathies in the Netherlands.

Objective: To study psychological outcomes, knowledge, recall and understanding of test-results, satisfaction, and reproductive intentions among 97 Western and 46 non-Western participants in a unique preconceptional carrier screening study for both cystic fibrosis and hemoglobinopathies in a multiethnic population the Netherlands, in which a couple's eligibility for cystic fibrosis and/or hemoglobinopathies testing was based on both partners' ancestry.

Methods: Questionnaires before and after pretest consultation, and 1 week and 3 months after receiving test-results. Three cystic fibrosis and seven hemoglobinopathy carriers were identified, but no carrier couples.

Educational priorities and current involvement in genetic practice: a survey of midwives in the Netherlands, UK and Sweden.

Objective: to investigate whether practising midwives are adequately prepared to integrate genetic information into their practice.

Design: a cross-sectional, postal, structured questionnaire survey was sent to practising midwives.

Setting: practising midwives from the Netherlands (NL), Sweden (SE) and the United Kingdom (UK).

Why are Dutch rheumatologists reluctant to use the COBRA treatment strategy in early rheumatoid arthritis?

Background: The Combinatietherapie Bij Reumatoide Artritis (COBRA) trial has proved that combination therapy with prednisolone, methotrexate and sulphasalazine is superior to sulphasalazine monotherapy in suppressing disease activity and radiological progression of early rheumatoid arthritis (RA). In addition, 5 years of follow-up proved that COBRA therapy results in sustained reduction of the rate of radiological progression. Despite this evidence, Dutch rheumatologists seem reluctant to prescribe COBRA therapy.

Genetics education for non-genetic health care professionals in the Netherlands (2002).

Objective: The aim of the present study was to investigate whether medical care providers in the Netherlands are adequately educated in genetics by collecting information about the current state of genetics education of non-genetics health care professionals.

Method: The curricula of the 8 universities providing medical education and of all varieties of specialised medical training were examined for the year 2002.

Results: In most universities, the number of hours spent on genetics education is small, and genetics is relatively invisible, being integrated within several courses, comprising only a small proportion of the total course (a mean of 8%).

Does stimulating self-care increase self-care behaviour for minor illnesses of Dutch and Turkish inhabitants of a deprived area in The Netherlands?

Objective: The aim of the present study was to examine whether self-care behaviour increases after a self-care stimulating intervention that proved to be successful in reducing care-seeking behaviour for minor illnesses of Turkish and Dutch inhabitants of a deprived area in the Netherlands, and to see whether there are cultural differences.

Method: This longitudinal study was based on a "pre-test/post-test one group" design. Data were collected during three structured face-to-face interviews: before the intervention, and 6 months and 1 year after the intervention, in which GPs personally handed out booklets to their patients containing guidelines on the management of 12 minor illnesses.

Decreasing the number of consultations for minor illnesses of Turkish and Dutch inhabitants of a deprived area in The Netherlands: an intervention study.

Objective: The purpose of this study was to assess the effectiveness of GPs personally handing out to their patients booklets about minor ailments and self-limiting health problems (minor illnesses).

Methods: The study was a pre-test-post-test, control group design and took place in seven general practices. The participants were 162 patients (72 Turkish, 70 Dutch and 20 of other nationality) who frequently visit their GP (>5 times a year), living in deprived areas of The Hague.