Sylvia Roozen

Introduction & Objectives: People with spina bifida (SB) require lifelong care from various specialists, with the organization and availability of care differing across Europe. This variation likely impacts care outcomes from a patient perspective. Children with SB have emphasized the importance of researching quality of life (QoL) and sexuality. The European Association of Urology−European Society of Pediatric Urology (EAU−ESPU) guidelines panel aims to ensure optimal care for these children by incorporating patient perspectives into clinical guidelines. The International Federation for Spina Bifida and Hydrocephalus (IFSBH) promotes the rights of children with SB to improve their QoL. In collaboration with the IFSBH, the EAU−ESPU guidelines panel has developed a survey to evaluate the current organization of care, demographic features, and received treatment. Materials & Methods: The digital survey was created on Surveymonkey® and included a primary survey on demographic features, medical treatment history, and organization of care. The second part included the QUAlity of Life Assessment in Spina Bifida (QUALAS) questionnaire and the International Index for Erectile Function (IIEF‐5) for boys and Female Sexual Function Index (FSFI‐6) for girls, both for ages 13 and older. The survey was available in 11 languages. Results: A total of 281 respondents completed the survey. QUALAS scores reported were all lower compared to standard values. QUALAS‐C (Esteem and Independence): mean score 56.0 ± 19.9, (Bladder and Bowel): mean score 56.0 ± 27.7, QUALAS‐T (Family and Independence): mean score 60.1 ± 20.3, (Bladder and Bowel): mean score 53.7 ± 25.3. The QoL was assessed across eight domains, all scored below 6 on a 0−10 scale, with the lowest scores for sexuality. Sexuality was assessed with validated questionnaires for 46 respondents. FSFI‐6 (Females): Mean score 14.45 ± 8.28, indicating female sexual dysfunction. IIEF‐5 (Males): Mean score 17.00 ± 6.03, indicating mild‐moderate erectile dysfunction. The assessment of organization of care included catheter and medication use, with notable differences in payment methods among countries. Healthcare provider contact revealed difficulties with varied first points of contact. Conclusion: The results of the survey demonstrated that respondents with SB experience worse QoL compared to historical cohorts. Decreased sexual function was observed in females with SB, while males exhibited mild erectile dysfunction. This underscores the importance of addressing these topics in both clinical care and research. Variations in care organization were identified which can be used to improve healthcare for people with SB. Trial Registration: NCT06725745.

In March 2020, the Your COVID-19 Risk tool was developed in response to the global spread of SARS-CoV-2. The tool is an online resource based on key behavioural evidence-based risk factors related to contracting and spreading SARS-CoV-2. This article describes the development of the tool, the produced resources, the associated open repository, and initial results. This tool was developed by a multidisciplinary research team consisting of more than 150 international experts. This project leverages knowledge obtained in behavioural science, aiming to promote behaviour change by assessing risk and supporting individuals completing the assessment tool to protect themselves and others from infection. To enable iterative improvements of the tool, tool users can optionally answer questions about behavioural determinants. The data and results are openly shared to support governments and health agencies developing behaviour change interventions. Over 60 000 users in more than 150 countries have assessed their risk and provided data.

Background and Aims: Alcohol‐related liver disease is the most frequent cause of cirrhosis and a major indication for liver transplantation. Several alcohol use biomarkers have been developed in recent years and are already in use in several centers. However, in patients with liver disease their diagnostic performance might be influenced by altered biomarker formation by hepatic damage, altered excretion by kidney dysfunction and diuretics use, and altered deposition in hair and nails. We systematically reviewed studies on the diagnostic accuracy of biomarkers of alcohol use in patients with liver disease and performed a detailed study quality assessment.Methods: A structured search in PubMed/Medline/Embase databases was performed for relevant studies, published until April 28, 2019. The risk of bias and applicability concerns was assessed according to the adapted quality assessment of diagnostic accuracy studies‐2 (QUADAS‐2) checklist.Results: Twelve out of 6,449 studies met inclusion criteria. Urinary ethyl glucuronide and urinary ethyl sulfate showed high sensitivity (70 to 89 and 73 to 82%, respectively) and specificity (93 to 99 and 86 to 89%, respectively) for assessing any amount of alcohol use in the past days. Serum carbohydrate‐deficient transferrin showed low sensitivity but higher specificity (40 to 79 and 57 to 99%, respectively) to detect excessive alcohol use in the past weeks. Whole blood phosphatidylethanol showed high sensitivity and specificity (73 to 100 and 90 to 96%, respectively) to detect any amount of alcohol use in the previous weeks. Scalp hair ethyl glucuronide showed high sensitivity (85 to 100%) and specificity (97 to 100%) for detecting chronic excessive alcohol use in the past 3 to 6 months. Main limitations of the current evidence are the lack of an absolute gold standard to assess alcohol use, heterogeneous study populations, and the paucity of studies.Conclusions: Urinary and scalp hair ethyl glucuronide are currently the most validated alcohol use biomarkers in patients with liver disease with good diagnostic accuracies. Phosphatidylethanol is a highly promising alcohol use biomarker, but so far less validated in liver patients. Alcohol use biomarkers can complement each other regarding diagnostic time window. More validation studies on alcohol use biomarkers in patients with liver disease are needed.

Alcohol consumption during pregnancy can lead to fetal alcohol spectrum disorders (FASD). FASD is a spectrum of structural, functional, and neurodevelopmental problems with often lifelong implications, affecting communities worldwide. It is a leading preventable form of intellectual disabilities and therefore warrants effective prevention approaches. However, well-intended FASD prevention can increase stigmatization of individuals with FASD, women who consume or have consumed alcohol during pregnancy, and non-biological parents and guardians of individuals with FASD. This narrative review surveyed the literature on stigmatization related to FASD. Public stigma appears to be the most common form of stigma studied. Less is known about FASD-related self-stigma, stigma by association, and structural stigma. Accordingly, the current literature on FASD-related stigma does not appear to provide sufficient guidance for effectively reducing FASD-related stigma. However, lessons can be learned from other related health topics and the use of a systematic approach for the development of health promotion programs, namely Intervention Mapping.

Objectives Fetal alcohol spectrum disorders (FASD) is a worldwide problem. Maternal alcohol consumption is an important risk factor for FASD. It remains unknown which alcohol consumption patterns most strongly predict FASD. The objective of this study was to identify these. Design Systematic literature review. Methods We searched in PubMed, PsychINFO, PsycARTICLES, ERIC, CINAHL, Embase and MEDLINE up to August 2018. The query consisted of keywords and their synonyms related to FASD, pregnancy and behaviour. Studies were excluded when not published in English, were reviews or involved non-human subjects. Substantial heterogeneity precluded aggregation or meta-analysis of the data. Instead, data were qualitatively inspected. Results In total, 21 studies were eligible for further data analysis. All studies that measured both maternal alcohol drinking behaviours and FASD reported retrospective data on maternal drinking patterns, employing both continuous and categorical measures and exhibiting substantial heterogeneity in measures of alcohol consumption (eg, timing of exposure, quantification of alcohol measure and definition of a standard drink). Study quality improved over time and appeared higher for studies based on active case ascertainment, especially when conducted in schools and when behaviour was assessed through interviews. Conclusions We aimed to identify specific maternal drinking behaviour(s) related to FASD. The state of the literature precludes such conclusions. Evidence-based preventive measures necessitate identifying which prenatal alcohol drinking behaviour(s) are most in need of intervention. Therefore, we formulate three recommendations for future research. First, future studies can optimise the value of the collected dataset through specifying measurements and reporting of maternal drinking behaviours and avoiding categorised measures (nominal or ordinal) whenever possible. Second, samples should not be selected based on FASD status, but instead, FASD status as well as maternal alcohol consumption should both be measured in a general population sample. Finally, we provide 10 reporting guidelines for FASD research.

BackgroundFetal Alcohol Spectrum Disorders (FASD) is an important global health problem in need of prevention. For FASD prevention it is important to understand why pregnant women engage or do not engage in drinking alcohol. It remains unknown which psychosocial determinants related to maternal alcohol consumption are most in need of prevention. The objective of this study was to identify these.MethodWe searched in PubMed, PsychINFO, PsychARTICLES, ERIC, CINAHL, EMBASE and MEDLINE databases up to May 2018 using an extensive query consisting of keywords related to pregnancy (e.g., maternal, prenatal), alcohol use (e.g., alcohol, drink) and determinants (e.g., attitude, norm). Studies were excluded when not published in English, were reviews, or involved non-human subjects. Substantial heterogeneity precluded aggregation or meta-analysis of the data. Instead, data were qualitatively inspected.ResultsA total of 23 studies including 150 identified items were eligible for data analysis. Studies covered over 15 psychosocial determinants (e.g., attitude, perceived social norm, risk perception). Studies differed in their operationalizations. As a majority of data was based on univariate analysis, little is known about the relationship with specific drinking behaviors. The majority of studies targeted perceived risk and motivation to comply with each social referents' approval or disapproval. A large proportion of studies focused on disadvantages and risks of maternal alcohol consumption. Results from these studies show that women do not continue to drink because the risks are unknown to them. Cautious interpretation is needed while the observed heterogeneity hindered firm conclusions. Conclusion We aimed to identify all relevant psychosocial determinants of maternal alcohol consumption behavior(s). The state of the literature precludes such conclusions. It remains unknown which determinants are most in need of intervention. It is recommended for future studies to (i) identify all possible psychosocial determinants of drinking during pregnancy using both quantitative and qualitative methods; (ii) include different target groups (e.g., women with unplanned pregnancies, pregnant women, women in childbearing age); (iii) identify key environmental agents; (iv) operationalize their measures based on theoretical models; (v) report specific variables such as the study method and association with behavior.

Objectives: Fetal Alcohol Spectrum Disorders (FASD) is a worldwide problem. Maternal alcohol consumption is an important risk factor for FASD. It remains unknown which alcohol consumption patterns most strongly predict FASD. The objective of this study was to identify these.Design: Systematic literature review.Methods: We searched in PubMed, PsychINFO, PsycARTICLES, ERIC, CINAHL, EMBASE and MEDLINE upto August 2018. The query consisted of keywords and their synonyms related to FASD, pregnancy, and behavior. Studies were excluded when not published in English, were reviews, or involved non-human subjects. Substantial heterogeneity precluded aggregation or meta-analysis of the data. Instead, data were qualitatively inspected.Results: In total, 21 studies were eligible for further data analysis. All studies that measured both maternal alcohol drinking behaviors and FASD reported retrospective data on maternal drinking patterns, employing both continuous and categorical measures and exhibiting substantial heterogeneity in measures of alcohol consumption (e.g., timing of exposure, quantification of alcohol measure,definition of a standard drink). Study quality improved over time and appeared higher for studies based on active case ascertainment, especially when conducted in schools, and when behavior was assessed through interviews.Conclusions: We aimed to identify specific maternal drinking behavior(s) related to FASD. The state ofthe literature precludes such conclusions. Evidence-based preventive measures necessitate identifying which prenatal alcohol drinking behavior(s) are most in need of intervention. Therefore, we formulate three recommendations for future research. First, future studies can optimize the value of the collected dataset through specifying measurements and reporting of maternal drinking behaviors, and avoiding categorized measures (nominal or ordinal) whenever possible. Second, samples should not be selected based on FASD status, but instead, FASD status as well as maternal alcohol consumption should both be measured in a general population sample. Finally, we provide ten reporting guidelines for FASD research.