Dutch Health Council Research Articles

Reconsidering the 14-day rule in human embryo research: Advice from the Dutch Health Council

The Dutch Health Council has advised to extend the 14-day rule to 28days and to subsume integrated stem cell-based embryo models under the same legislative regime as natural embryos. Public discussion is necessary due to the ethical issues that may emerge from studying integrated and non-integrated embryo models.

Diet quality and long-term cardiovascular mortality after myocardial infarction in the Alpha Omega Cohort

Abstract Introduction A healthy diet is important for the prevention and treatment of cardiovascular disease (CVD). The Dutch Health Council recently defined dietary guidelines for patients with atherosclerotic CVD (ASCVD), which we investigated in relation to long-term mortality after myocardial infarction (MI). Purpose We developed the Dutch Healthy Diet index for CVD patients (DHD-CVD index) and examined its relation with mortality in post-MI patients. Methods We included 4,365 patients of the Dutch Alpha Omega Cohort (60-80 y, 80% male) with a MI <10 y prior to study enrolment. Dietary intake was assessed at baseline (2002-2006), using a validated 203-item food frequency questionnaire. To create the DHD-CVD index, the existing 2015 Dutch Healthy Diet index was adapted using the 2023 Dutch dietary guidelines for ASCVD patients (scale from 0 to maximal adherence [0-150]). Patients were followed for cause-specific mortality through December 2018. Hazard Ratios (HRs) across quartiles of the DHD-CVD-index (ref = Q1, i.e. low overall diet quality) and per 1-SD increment in score were estimated using Cox proportional hazard models. Associations were adjusted for age, sex, total energy intake, smoking, education and physical activity. Results were additionally stratified for sex, obesity and diabetes. Results Of the cohort, 17% smoked, 21% had diabetes and >90% used statins or other CVD drugs. During a follow-up of 48,660 person-years, 2,048 deaths occurred of which 911 were due to CVD. The mean DHD-CVD score was 78.9 (SD 13) points. High diet quality (Q4) was associated with a 29% lower risk of CVD mortality compared to low diet quality (HR: 0.71, 95% CI: 0.56, 0.84), with an HR of 0.88 (95% CI: 0.82, 0.94) per 1-SD. For all-cause mortality, we observed a 14% lower risk for high vs. low diet quality (HR: 0.86, 95% CI: 0.76, 0.98), with an HR of 0.94 (95% CI: 0.90, 0.98) per 1-SD. HRs did not essentially differ between male of female patients, or between obese and non-obese patients. HRs for CVD mortality were stronger in non-diabetic patients (HR: 0.86, 95% CI: 0.79, 0.93; per 1-SD), and no longer statistically significant in patients with diabetes (HR: 0.97, 95% CI: 0.84, 1.11; per 1-SD). Conclusion A high diet quality, measured with the DHD-CVD index, was associated with a lower risk of CVD and all-cause mortality after MI in Dutch patients. Adherence to dietary guidelines for CVD patients should be considered on top of medication use.

Energy transition related noise issues and its health consequences

Climate change leads to architectural adaptations in urban areas, heat islands and increased use of ventilation/cooling systems, expansion of windparks and behavioral changes. Most changes are part of the energy transition and affect noise exposure and related perceptions and health/wellbeing. Against this background the influence of adaptive measures on noise exposure was explored by us since 2011 by means of literature reviews and , secondary analysis of existing survey data. A recent review of the Dutch Health Council confirmed and expanded the importance of earlier detected noise issues related to energy transitions. Four noise issues came forward 1)Insulations and ventilation 2) increased use of electronic appliances 3)increased complexity of electronic appliances 4) cooling and heating systems. In our view, also the expansion of the windpark should be added to this list . Noise characteristics of these sources have an equivalent-, and low frequent component in common. It is remarkable how little progress has been achieved in mapping the health consequences of these "new" sources, since 2011. This paper will give an overview of the evidence and gaps based on recent literature reviews, and a survey on the acceptance of new energy saving measures in relation to annoyance and risk perception.

Sex-specific newborn screening for X-linked adrenoleukodystrophy.

Males with X-linked adrenoleukodystrophy (ALD) are at high risk for developing adrenal insufficiency and/or progressive leukodystrophy (cerebral ALD) at an early age. Pathogenic variants in ABCD1 result in elevated levels of very long-chain fatty acids (VLCFA), including C26:0-lysophosphatidylcholine (C26:0-LPC). Newborn screening for ALD enables prospective monitoring and timely therapeutic intervention, thereby preventing irreversible damage and saving lives. The Dutch Health Council recommended to screen only male newborns for ALD without identifying untreatable conditions associated with elevated C26:0-LPC, like Zellweger spectrum disorders and single peroxisomal enzyme defects. Here, we present the results of the SCAN (Screening for ALD in the Netherlands) study which is the first sex-specific newborn screening program worldwide. Males with ALD are identified based on elevated C26:0-LPC levels, the presence of one X-chromosome and a variant in ABCD1, in heel prick dried bloodspots. Screening of 71 208 newborns resulted in the identification of four boys with ALD who, following referral to the pediatric neurologist and confirmation of the diagnosis, enrolled in a long-term follow-up program. The results of this pilot show the feasibility of employing a boys-only screening algorithm that identifies males with ALD without identifying untreatable conditions. This approach will be of interest to countries that are considering ALD newborn screening but are reluctant to identify girls with ALD because for girls there is no direct health benefit. We also analyzed whether gestational age, sex, birth weight and age at heel prick blood sampling affect C26:0-LPC concentrations and demonstrate that these covariates have a minimal effect.

Concepts of health in different contexts: a scoping review

The rationale of our study was that the World Health Organization’s (WHO) definition of health from 1947 which includes “… complete physical, mental and social wellbeing…” does not fit the current societal viewpoints anymore. The WHO’s definition of health implies that many people with chronic illnesses or disabilities would be considered unhealthy and complete wellbeing would be utopian and unfeasible for them. This is no longer uniformly accepted. Many alternative concepts of health have been discussed in the last decades such as ‘positive health’, which focusses on someone’s capability rather than incapability,. However, the question remains whether a general health concept can guide all healthcare practices. More likely, health concepts need to be specified for professions or settings. The objective of our study was to create a structured overview of published concepts of health from different perspectives by conducting a scoping review using the PRISMA-ScR guideline. A literature search was conducted in Pubmed and Cinahl. Articles eligible for inclusion focussed on the discussion or the conceptualisation of health or health-related concepts in different contexts (such as the perspective of care workers’ or patients’) published since 2009 (the Dutch Health Council raised the discussion about moving towards a more dynamic perspective on health in that year). Seventy-five articles could be included for thematic analyses. The results showed that most articles described a concept of health consisting of multiple subthemes; no consensus was found on one overall concept of health. This implies that healthcare consumers act based on different health concepts when seeking care than care workers when providing care. Having different understandings of the concepts of health can lead to misunderstandings in practice. In conclusion, from every perspective, and even for every individual, health may mean something different. This finding stresses the importance that care workers’ and healthcare consumers’ meaning of ‘health’ has to be clear to all actors involved. Our review supports a more uniform tuning of healthcare between healthcare providers (the organisations), care workers (the professionals) and healthcare consumers (the patients), by creating more awareness of the differences among these actors, which can be a guide in their communication.

Adherence to dietary guidelines and cognitive decline from middle age: the Doetinchem Cohort Study

ABSTRACTBackgroundDiet, in particular the Mediterranean diet, has been associated with better cognitive function and less cognitive decline in older populations.ObjectivesTo quantify associations of a healthy diet, defined by adherence to either the Mediterranean diet, the WHO guidelines, or Dutch Health Council dietary guidelines, with cognitive function and cognitive decline from middle age into old age.MethodsFrom the Doetinchem Cohort Study, a large population-based longitudinal study, 3644 participants (51% females) aged 45–75 y at baseline, were included. Global cognitive function, memory, processing speed, and cognitive flexibility were assessed at 5-y time intervals up to 20-y follow-up. Adherence to the Mediterranean diet was measured with the modified Mediterranean Diet Score (mMDS), adherence to the WHO dietary guidelines with the Healthy Diet Indicator (HDI), and adherence to the Dutch Health Council dietary guidelines 2015 with the modified Dutch Healthy Diet 2015 index (mDHD15-index). The scores on the dietary indices were classified in tertiles (low, medium, high adherence). Linear mixed models were used to model level and change in cognitive function by adherence to healthy diets.ResultsThe highest tertiles of the mMDS, HDI, and mDHD15-index were associated with better cognitive function compared with the lowest tertiles (P values <0.01), for instance at age 65 y equal to being 2 y cognitively younger in global cognition. In addition, compared with the lowest tertiles, the highest tertiles of the mMDS, HDI, and mDHD15-index were statistically significantly associated with 6–7% slower global cognitive decline from age 55 to 75 y, but also slower decline in processing speed (for mMDS: 10%; 95% CI: 2, 18%; for mDHD15: 12%; 95% CI: 6, 21%) and cognitive flexibility (for mDHD15: 10%; 95% CI: 4, 18%).ConclusionsHealthier dietary habits, determined by higher adherence to dietary guidelines, are associated with better cognitive function and slower cognitive decline with aging from middle age onwards.

How to increase awareness of additional vaccinations; the case of maternal pertussis vaccination

BackgroundEffective and safe vaccines are available outside national immunization programs (NIP). Increased awareness and vaccine uptake can improve public health. Before the inclusion of maternal pertussis vaccination (MPV) in the Dutch NIP in December 2019, extra communication efforts were undertaken. Here we examine the success of these efforts, investigating women’s awareness of and their decision-making process regarding MPV.MethodsBetween December 2018 and January 2019, one year before the introduction of MPV in the NIP, and about three years after MPV was recommended by the Dutch Health Council, pregnant and non-pregnant women (i.e. child younger than two years) were invited to fill out an online questionnaire. Participant’s decision-making processes regarding MPV were assessed with an adapted Precaution Adoption Process Model (PAPM), including stages of awareness, engagement, information-seeking, and vaccination behaviour. Furthermore, factors related to the decision-making process were examined.ResultsIn total, 942 women were included, of whom 62% were non-pregnant. Most of the pregnant and nonpregnant women were aware of MPV during pregnancy (respectively 69 and 56%). Most aware women had heard about MPV through their midwife and the Public Health Institute (PHI) website. Women unaware of MPV reported a need for information, preferably from their midwives. Most aware women felt MPV was important to them (88%) and were classified as “engaged”. Of the eligible and “engaged” pregnant women, 58% were vaccinated, versus 38% of “engaged” non-pregnant women.ConclusionsAs the most preferred and trusted source of information, midwives are essential to increasing awareness of MPV. The PHI website is considered to be a reliable information source and is often consulted. To increase awareness, appropriate healthcare workers should be encouraged to actively inform target groups about available, additional vaccinations.

Evaluation of Nutrient Intake and Food Consumption among Dutch Toddlers.

Improving dietary habits at a young age could prevent adverse health outcomes. The aim was to gain insight into the adequacy of the dietary intake of Dutch toddlers, which may provide valuable information for preventive measures. Data obtained from the Dutch National Food Consumption Survey 2012–2016 were used, which included 672 children aged one to three years. Habitual intakes of nutrients were evaluated according to recommendations set by the Dutch Health Council. Specific food groups were evaluated according to the Dutch food-based dietary guidelines. For most nutrients, intakes were estimated to be adequate. High intakes were found for saturated fatty acids, retinol, iodine, copper, zinc, and sodium. No statement could be provided on the adequacy of intakes of alpha-linoleic acids, N-3 fish fatty acids, fiber, and iron. 74% of the toddlers used dietary supplements, and 59% used vitamin D supplements specifically. Total median intakes of vegetables, bread, and milk products were sufficient. Consumption of bread, potatoes and cereals, milk products, fats, and drinks consisted largely of unhealthy products. Consumption of unfavorable products may have been the cause of the observed high and low intakes of several nutrients. Shifting towards a healthier diet that is more in line with the guidelines may positively affect the dietary intake of Dutch toddlers and prevent negative health impacts, also later in life.

Adrenoleukodystrophy Newborn Screening in the Netherlands (SCAN Study): The X-Factor.

X-linked adrenoleukodystrophy (ALD) is a devastating metabolic disorder affecting the adrenal glands, brain and spinal cord. Males with ALD are at high risk for developing adrenal insufficiency or progressive cerebral white matter lesions (cerebral ALD) at an early age. If untreated, cerebral ALD is often fatal. Women with ALD are not at risk for adrenal insufficiency or cerebral ALD. Newborn screening for ALD in males enables prospective monitoring and timely therapeutic intervention, thereby preventing irreparable damage and saving lives. The Dutch Ministry of Health adopted the advice of the Dutch Health Council to add a boys-only screen for ALD to the newborn screening panel. The recommendation made by the Dutch Health Council to only screen boys, without gathering any unsolicited findings, posed a challenge. We were invited to set up a prospective pilot study that became known as the SCAN study (SCreening for ALD in the Netherlands). The objectives of the SCAN study are: (1) designing a boys-only screening algorithm that identifies males with ALD and without unsolicited findings; (2) integrating this algorithm into the structure of the Dutch newborn screening program without harming the current newborn screening; (3) assessing the practical and ethical implications of screening only boys for ALD; and (4) setting up a comprehensive follow-up that is both patient- and parent-friendly. We successfully developed and validated a screening algorithm that can be integrated into the Dutch newborn screening program. The core of this algorithm is the “X-counter.” The X-counter determines the number of X chromosomes without assessing the presence of a Y chromosome. The X-counter is integrated as second tier in our 4-tier screening algorithm. Furthermore, we ensured that our screening algorithm does not result in unsolicited findings. Finally, we developed a patient- and parent-friendly, multidisciplinary, centralized follow-up protocol. Our boys-only ALD screening algorithm offers a solution for countries that encounter similar ethical considerations, for ALD as well as for other X-linked diseases. For ALD, this alternative boys-only screening algorithm may result in a more rapid inclusion of ALD in newborn screening programs worldwide.

The Effect of the Paleolithic Diet vs. Healthy Diets on Glucose and Insulin Homeostasis: A Systematic Review and Meta-Analysis of Randomized Controlled Trials.

Recently, the Paleolithic diet became popular due to its possible health benefits. Several, albeit not all, studies suggested that the consumption of the Paleolithic diet might improve glucose tolerance, decrease insulin secretion, and increase insulin sensitivity. Therefore, the aim of this meta-analysis was to compare the effect of the Paleolithic diet with other types of diets on glucose and insulin homeostasis in subjects with altered glucose metabolism. Four databases (PubMed, Web of Sciences, Scopus, and the Cochrane Library) were searched to select studies in which the effects of the Paleolithic diet on fasting glucose and insulin levels, glycated hemoglobin (HbA1c), homeostasis model assessment of insulin resistance (HOMA-IR), and area under the curve (AUC 0–120) for glucose and insulin during the oral glucose tolerance test were assessed. In total, four studies with 98 subjects which compared the effect of the Paleolithic diet with other types of diets (the Mediterranean diet, diabetes diet, and a diet recommended by the Dutch Health Council) were included in this meta-analysis. The Paleolithic diet did not differ from other types of diets with regard to its effect on fasting glucose (standardized mean difference (SMD): −0.343, 95% confidence interval (CI): −0.867, 0.181, p = 0.200) and insulin (SMD: −0.141; 95% CI: −0.599, 0.318; p = 0.548) levels. In addition, there were no differences between the Paleolithic diet and other types of diets in HOMA-IR (SMD: −0.151; 95% CI: −0.610, 0.309; p = 0.521), HbA1c (SMD: −0.380; 95% CI: −0.870, 0.110; p = 0.129), AUC 0–120 glucose (SMD: −0.558; 95% CI: −1.380, 0.264; p = 0.183), and AUC 0–120 insulin (SMD: −0.068; 95% CI: −0.526, 0.390; p = 0.772). In conclusion, the Paleolithic diet did not differ from other types of diets commonly perceived as healthy with regard to effects on glucose and insulin homeostasis in subjects with altered glucose metabolism.

Development and implementation of online tools for personalized dietary advice at home or in a clinical setting: Eetscore and NutriProfiel

AbstractIntroduction:It is known that significant proportions of the general public do not meet current recommendations. This may be explained by a lack of knowledge or perceived difficulty trying to adhere to the recommendations. In addition, health professionals, such as general physicians, lack solid education in nutrition, which hampers optimal care and prevention in diet-related disorders. In order to help people and health professionals to improve dietary habits, the Eetscore and NutriProfiel tools were developed and implemented.Methods:The Eetscore tool assesses to what extent daily intake adheres to the 2015 Dutch Food Based Dietary Guidelines developed by the Dutch Health Council. The tool consists of a short online food frequency questionnaire (FFQ) which is scored with the Dutch Healthy Diet Index. The total Eetscore (including 16 subscores) ranges from zero to 160, with higher scores implying better adherence to the guidelines. Both FFQ and Index have been validated.NutriProfiel is a specific application in which the Eetscore monitors micronutrients. Micronutrient deficiencies are common and diagnosed with blood tests. A deficiency may be explained by poor diet or pathophysiology, which requires different follow-up. Therefore, it is important to include information on dietary intake while interpreting micronutrient blood concentrations. For NutriProfiel, the clinical laboratory information system is coupled to the Eetscore questionnaire. Patients who undergo laboratory testing for vitamin B6, folate, B12 and/or D receive a link to the Eetscore questionnaire. Nutriprofiel combines blood values and dietary intake to generate a dietary advice. The advice contains practical hints to increase micronutrient intake and is reported electronically to the doctor.Results:The Eetscore and NutriProfiel tools have been successfully developed and implemented in 2015, with an increasing number of (clinical) users. The Eetscore has been evaluated and applied for monitoring intake in research, and in medical practices as part of an ehealth platform in health professionals and patients.The NutriProfiel tool has been positively evaluated by its users and is currently available for all requests for vitamin blood analyses coming from general physicians and selected medical specialists (e.g. gastrointestinal medicine, internal medicine).Discussion:Both the Eetscore and NutriProfiel have been successfully developed and implemented for use in both home settings as well as clinical settings. Future perspectives include further implementation of the Eetscore for other clinical disciplines or specific patient populations. For NutriProfiel, future perspectives also include expanding the list of nutrient biomarkers for which a personalized dietary advice can be provided.

Malnutrittion among Dutch children? Results of the Dutch national food consumption survey 2012–2016

AbstractIntroduction:An adequate and balanced intake of energy and nutrients is important for growth of children and prevention of diseases. The aim of this study was to get insight in the prevalence of low and high intakes of micronutrients and its association with overweight among Dutch children. This insight can contribute to the development of policy on healthy diet and specific nutritional information.Materials and methods:Food and supplement consumption data of children 1–18 years (n = 2.235) were collected in 2012–2016 with two independent 24-hr recalls. Body Mass Index (BMI) was based on measured body height and weight for 1–15 year-olds, and self-reported values for 16–18 year–olds. Using the Dutch food and supplement composition tables, the habitual nutrient and energy intake distribution were estimated and evaluated with the dietary reference values of the Dutch Health Council. Analyses were performed for the total group as well as for classes of BMI.Results:The intake of most micronutrients was sufficient for the children until the age of 13. No statement on this can be made for the intake of iron and vitamin D (girls). For the Dutch teenagers, low intakes of vitamin A (43%), iron (10% of the boys and 77% of the girls) and vitamin C (18%) were observed. For many other nutrients (calcium, potassium, magnesium, iron, zinc, vitamins B1, B2, B6, D, K1 and folate) the risk of low intakes among (subgroups of) teenagers were evaluated as ‘unknown’, as the median intakes were lower than the adequate intakes. In all age groups, the intakes of copper and vitamins B3 and B12 were sufficient.At the same time, the majority of the children (72% of the boys and 50% of the girls) had a high intake of sodium and a small number of children had high intakes of zinc (7%), copper (3%) or vitamin A (4% of the boys).17% of the children had overweight or obesity and for 9% the weight was evaluated as underweight. The prevalence of low intakes of vitamins A, D and iron was associated with BMI.Discussion:This study suggests that the food consumption of Dutch children can be improved with a more balanced intake of energy and nutrients to prevent obesity and low and high intakes. However, not for all nutrients the health impact is clear. So, more research on the nutrient requirements among children and the related health impact is necessary.

Example B: Using online respondent-driven sampling among Moroccan immigrants in the Netherlands

Abstract The Dutch Health Council recommended chronic hepatitis B (HBV) screening for first-generation immigrants originating from intermediate/high HBV endemic countries. The Council proposed two screening strategies; individual case finding by general practitioners and local screening programmes. Our aim was to explore knowledge and information needs regarding chronic HBV and its screening among Moroccan immigrants in the Netherlands, in order to provide Dutch Municipal Health Services insights on how to inform immigrants. We also studied a randomized recruitment method using respondent-driven sampling (RDS) for a better understanding on how to reach and recruit immigrants for an online questionnaire. First- and second-generation Moroccan immigrants were asked to fill in an online questionnaire and forward this to four Moroccan contacts. Participants were randomized to one of three recruitment strategies; no incentive for filling in the questionnaire nor for successfully recruiting each contact, an incentive for filling in the questionnaire and for successfully recruiting each contact, and a gamified element as non-monetary incentive to stimulate peer-recruitment. Preliminary analyses show a sample of 59 Moroccans (17-59 years), of which 63% was second-generation and 76% was female. Of these, 46% would like to have information about chronic hepatitis B, while the average knowledge score was 5.02 (0-10). Over 60% of the participants intends to participate in chronic HBV screening, and would also recommend this to their (grand)parents. Using a monetary incentive seemed to be the best recruitment strategy in terms of the number of waves (max: 3). A gamified non-monetary incentive was least effective in stimulating peer-recruitment (max: 0). Despite the limited level of knowledge and information need, the majority of Moroccan immigrants had a positive screening intention. The next step is to determine whether our methodology could be applied to reach other immigrant groups.

Cost-effectiveness analysis on elderly pneumococcal vaccination in the Netherlands: Challenging the Dutch Health Council’s advice

Recently, the Dutch Health Council advised on elderly pneumococcal vaccination favouring the conventional polysaccharide vaccine over the novel conjugated vaccine. This advice was strongly inspired by a cost-effectiveness analysis considered to show favourable outcomes for the polysaccharide but not for the conjugated vaccine. We argue that using the same data and methods as presented by the Health Council, a different perspective on the results leads to a conclusion that not only the polysaccharide but also the conjugated pneumococcal vaccine is cost-effective. Our alternative perspective concerns the use of realistic vaccine prices, and applying an adequate time horizon for cost-effectiveness modelling. Notably, for one-off vaccination of 65-years old elderly, in all investigated analyses, also the conjugated vaccine seems cost-effective; i.e. well below the threshold of €20,000 per quality-adjusted life year, reflecting the most stringent threshold used for vaccines in the Netherlands.

Difficulties in the diagnosis of galactokinase deficiency. Urine usefulness for the diagnosis and control

Galactokinase (GALK) deficiency causes cataract leading to severe developmental consequences unless treated early. Because of the easy prevention and rapid reversibility of cataract with treatment, the Dutch Health Council advised to include GALK deficiency in the Dutch newborn screening program. The aim of this study is to establish the optimal screening method and cut-off value (COV) for GALK deficiency screening by performing a systematic review of the literature of screening strategies and total galactose (TGAL) values and by evaluating TGAL values in the first week of life in a cohort of screened newborns in the Netherlands.Systematic literature search strategies in OVID MEDLINE and OVID EMBASE were developed and study selection, data collection and analyses were performed by two independent investigators. A range of TGAL values measured by the Quantase Neonatal Total Galactose screening assay in a cohort of Dutch newborns in 2007 was evaluated.Eight publications were included in the systematic review. All four studies describing screening strategies used TGAL as the primary screening marker combined with galactose-1-phosphate uridyltransferase (GALT) measurement that is used for classical galactosemia screening. TGAL COVs of 2200 μmol/L, 1665 μmol/L and 1110 μmol/L blood resulted in positive predictive values (PPV) of 100%, 82% and 10% respectively. TGAL values measured in the newborn period were reported for 39 GALK deficiency patients with individual values ranging from 3963 to 8159 μmol/L blood and 2 group values with mean 8892 μmol/L blood (SD ± 5243) and 4856 μmol/L blood (SD ± 461). Dutch newborn screening data of 72,786 newborns from 2007 provided a median TGAL value of 110 μmol/L blood with a range of 30–2431 μmol/L blood.Based on TGAL values measured in GALK deficiency patients reported in the literature and TGAL measurements in the Dutch cohort by newborn screening we suggest to perform the GALK screening with TGAL as a primary marker with a COV of 2500 μmol/L blood, combined with GALT enzyme activity measurement as used in the classical galactosemia screening, to ensure detection of GALK deficiency patients and minimize false positive referrals.

Introducing Newborn Screening for Severe Combined Immunodeficiency (SCID) in the Dutch Neonatal Screening Program.

The implementation of newborn screening for severe combined immunodeficiency (SCID) in the Netherlands is a multifaceted process in which several parties are involved. The Dutch Ministry of Health adopted the advice of the Dutch Health Council to include SCID in the Dutch newborn screening program in 2015. As newborn screening for SCID is executed with a new, relatively expensive assay for the Dutch screening laboratory, an implementation pilot study is deemed instrumental for successful implementation. A feasibility study was performed in which the practicalities and preconditions of expanding the newborn screening program were defined. Cost-effectiveness analysis (CEA) indicated that SCID screening in the Netherlands might be cost-effective, recognizing that there are still many uncertainties in the variables underlying the CEA. Data and experience of the pilot study should provide better estimates of these parameters, thus enabling the actualization of CEA results. Prior to the implementation pilot study, a comparison study of two commercially available SCID screening assays was performed. A prospective implementation pilot study or so-called SONNET study (SCID screening research in the Netherlands with TRECs) started in April 2018 and allows the screening for SCID of all newborns in three provinces of the Netherlands for one year. Based on the results of the SONNET study, the Dutch Ministry of Health will make a final decision about national implementation of newborn screening for SCID in the Netherlands.

Exploring solutions for healthy, safe, and sustainable fatty acids (EPA and DHA) consumption in The Netherlands

Advisory bodies such as the World Health Organization and the Dutch Health Council (DHC) recommend including fatty fish in one’s diet, based on the health benefits of their content of n − 3 poly unsaturated fatty acids (eicosapentaenoic acid—EPA and docosahexaenoic acid—DHA) being, i.e., the reduction of the risk of fatal cardio vascular disease and stroke. These dietary advices on these fatty acids’ (e.g., fatty fish) consumption are only based on the expected health benefits. But what would a dietary advice look like when the health benefits were weighed up against relevant sustainability and food safety considerations? The aim of the current study was to explore the consequences for safety, health, and sustainability of solutions to meet the DHC’s recommendation on EPA/DHA consumption. To this end, first, the health, food safety, and sustainability perspectives of the current fish production and consumption, being the main source of EPA/DHA, were identified. Second, alternative diet scenarios, meeting the daily advised intake of EPA/DHA, were collected and subsequently judged on their health, safety and (environmental) sustainability characteristics. To enable structuring the process of finding solutions for such complex problems, a specific framework was applied: solution-focused sustainability assessment. Based on stakeholder consultation, three scenarios were assessed: higher production and consumption of fatty fish (here: farmed salmon); increased human use of by-catch and discards; and increased consumption of alternative EPA/DHA sources (here: walnuts). It appeared that only in the scenario of increased use of by-catch and discards, the effects on human health and the environment and resources coincide, whereas in the other two scenarios, the positive health effects are expected to result in one or more negative effects on the environment. Besides, increased fish consumption causes more food safety problems; however, if one changes his/her diet and replaces meat by fish, this will lead to a net higher food safety. The analysis shows the sustainability limits of increased production and consumption of fatty fish and alternative EPA/DHA sources. This can support policy makers in setting goals and deciding on measures to encourage healthy and environmentally sustainable fish (i.e., EPA/DHA) consumption. Furthermore, this study shows in general the impact a policy initiative focusing on health aspects only can have on other aspects, such as environment and food safety. It emphasizes the added value of integrative assessments, which cover multiple effects when designing new sustainable policies.

Dutch Health Council Advisory Report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the Wrong Turn.

Recently, the Dutch Health Council published their advisory report on Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) which is meant to determine the medical policy with regard to ME in the Netherlands. The Health Council briefly discusses several diagnostic criteria and proposes to use new diagnostic criteria for “ME/CFS” in research and clinical practice in the future. The advisory report then summarizes organic abnormalities observed in the last decades and concludes that “ME/CFS” is a “serious, chronic, multisystem disease”. According to the Health Council there are no curative treatments for “ME/CFS”, due to lack of knowledge, but specific medication could bring symptomatic relief. The Health Council recommends conducting more research, to (re)educate medical professionals about “ME/CFS”, to appoint three academic expertise centres, which will install a care network for patients, and to fairly judge the limitations (disability) of patients when they apply for a disability income, medical aid and care. The advisory report was welcomed by many patients, because it puts an end to the dominance of the (bio)psychosocial explanatory model and seems to offer a perspective of improving the situation of patients. However, the starting point of the advisory report, a new definition of “ME/CFS”, will have serious (long-lasting) consequences for patients and researchers.

Hepatitis B in Moroccan-Dutch: a quantitative study into determinants of screening participation

BackgroundIn November 2016, the Dutch Health Council recommended hepatitis B (HBV) screening for first-generation immigrants from HBV endemic countries. However, these communities show relatively low attendance rates for screening programmes, and our knowledge on their participation behaviour is limited. We identified determinants associated with the intention to request an HBV screening test in first-generation Moroccan-Dutch immigrants. We also investigated the influence of non-refundable costs for HBV screening on their intention.MethodsOffline and online questionnaires were distributed among first- and second/third-generation Moroccan-Dutch immigrants using respondent-driven sampling. Random forest analyses were conducted to determine which determinants had the greatest impact on (1) the intention to request an HBV screening test on one’s own initiative, and (2) the intention to participate in non-refundable HBV screening at €70,-.ResultsOf the 379 Moroccan-Dutch respondents, 49.3% intended to request a test on their own initiative, and 44.1% were willing to attend non-refundable screening for €70,-. Clarity regarding infection status, not having symptoms, fatalism, perceived self-efficacy, and perceived risk of having HBV were the strongest predictors to request a test. Shame and stigma, fatalism, perceived burden of screening participation, and social influence of Islamic religious leaders had the greatest predictive value for not intending to participate in screening at €70,- non-refundable costs. Perceived severity and possible health benefit were facilitators for this intention measure. These predictions were satisfyingly accurate, as the random forest method retrieved area under the curve scores of 0.72 for intention to request a test and 0.67 for intention to participate in screening at €70,- non-refundable costs.ConclusionsBy the use of respondent-driven sampling, we succeeded in studying screening behaviour among a hard-to-reach minority population. Despite the limitations associated with correlated data and the sampling method, we recommend to (1) incorporate clarity regarding HBV status, (2) stress the risk of an asymptomatic infection, (3) emphasise mother-to-child transmission as the main transmission route, and (4) team up with Islamic religious leaders to help decrease elements of fatalism, shame, and stigma to enhance screening uptake of Moroccan immigrants in the Netherlands.

Recommendations for newborn screening for galactokinase deficiency: A systematic review and evaluation of Dutch newborn screening data

IntroductionGalactokinase (GALK) deficiency causes cataract leading to severe developmental consequences unless treated early. Because of the easy prevention and rapid reversibility of cataract with treatment, the Dutch Health Council advised to include GALK deficiency in the Dutch newborn screening program. The aim of this study is to establish the optimal screening method and cut-off value (COV) for GALK deficiency screening by performing a systematic review of the literature of screening strategies and total galactose (TGAL) values and by evaluating TGAL values in the first week of life in a cohort of screened newborns in the Netherlands. MethodsSystematic literature search strategies in OVID MEDLINE and OVID EMBASE were developed and study selection, data collection and analyses were performed by two independent investigators. A range of TGAL values measured by the Quantase Neonatal Total Galactose screening assay in a cohort of Dutch newborns in 2007 was evaluated. ResultsEight publications were included in the systematic review. All four studies describing screening strategies used TGAL as the primary screening marker combined with galactose-1-phosphate uridyltransferase (GALT) measurement that is used for classical galactosemia screening. TGAL COVs of 2200 μmol/L, 1665 μmol/L and 1110 μmol/L blood resulted in positive predictive values (PPV) of 100%, 82% and 10% respectively. TGAL values measured in the newborn period were reported for 39 GALK deficiency patients with individual values ranging from 3963 to 8159 μmol/L blood and 2 group values with mean 8892 μmol/L blood (SD ± 5243) and 4856 μmol/L blood (SD ± 461). Dutch newborn screening data of 72,786 newborns from 2007 provided a median TGAL value of 110 μmol/L blood with a range of 30–2431 μmol/L blood. ConclusionBased on TGAL values measured in GALK deficiency patients reported in the literature and TGAL measurements in the Dutch cohort by newborn screening we suggest to perform the GALK screening with TGAL as a primary marker with a COV of 2500 μmol/L blood, combined with GALT enzyme activity measurement as used in the classical galactosemia screening, to ensure detection of GALK deficiency patients and minimize false positive referrals.