Acquired hypothalamic dysfunction in childhood: 'what do patients need?' - an Endo-ERN survey.

Objective: Hypothalamic dysfunction is a rare condition and can be encountered in patients who have been diagnosed or treated for a suprasellar brain tumor. Due to its rarity, the signs and symptoms of hypothalamic dysfunction may be difficult to recognize, leading to delayed diagnosis of the suprasellar brain tumor or to difficulties in finding the health-care expertise for hypothalamic dysfunction after tumor treatment. To improve the care and outcome of patients with acquired hypothalamic dysfunction, professionals are required to understand the patient's needs. Design: A worldwide online survey was distributed from April 2022 to October 2022 to patients with childhood-onset hypothalamic dysfunction (as reported by the patient) following a brain tumor. Methods: Patients were notified about the survey through patient advocacy groups, the SIOPe craniopharyngioma working group and the Endo-ERN platform. Results: In total, 353 patients with hypothalamic dysfunction following craniopharyngioma (82.2%), low-grade glioma (3.1%) or a pituitary tumor (8.2%) or caregivers responded to the survey. Sixty-two percent had panhypopituitarism. Obesity (50.7%) and fatigue (48.2%) were considered the most important health problems. Unmet needs were reported for help with diet, exercise and psychosocial issues. Patients' suggestions for future research include new treatments for hypothalamic obesity and alternative ways for hormone administration. Conclusions: According to the patient's perspective, care for acquired hypothalamic dysfunction can be improved if delivered by experts with a holistic view of the patient in a multidisciplinary setting with a focus on quality of life. Future care and research on hypothalamic dysfunction must integrate the patients' unmet needs. Significance statement: Patients with hypothalamic dysfunction may experience a variety of symptoms, which are not always adequately recognized or addressed. In previous papers, the perspective of caregivers of children with craniopharyngioma has been reported (Klages et al. 2022, Craven et al. 2022). Now we address the patients' perspective on acquired hypothalamic dysfunction using an Endo-ERN global survey. According to the patients' perspective, care can be improved, with needs for improvement in the domains of obesity, fatigue and lifestyle. Research may focus on ways to improve hypothalamic obesity and alternative ways for hormone administration. Ideally, care should be delivered by doctors who have a holistic view of the patient in a multidisciplinary expert team. The results of this study can be used to formulate best practices for clinical care and to design future research proposals.

Community midwives' perspectives on perinatal care for asylum seekers and refugees in the Netherlands: A survey study.

BACKGROUND: The rise of forced migration worldwide compels birth care systems and professionals to respond to the needs of women giving birth in these vulnerable situations. However, little is known about the perspective of midwifery professionals on providing perinatal care for forcibly displaced women. This study aimed to identify challenges and target areas for improvement of community midwifery care for asylum seekers (AS) and refugees with a residence permit (RRP) in the Netherlands. METHODS: For this cross-sectional study, data were collected through a survey aimed at community care midwives who currently work or who have worked with AS and RRP. We evaluated challenges identified through an inductive thematic analysis of respondents' responses to open-ended questions. Quantitative data from close-ended questions were analyzed descriptively and included aspects related to the quality and organization of perinatal care for these groups. RESULTS: Respondents generally considered care for AS and RRP to be of lower quality, or at best, equal quality compared to care for the Dutch population, while the workload for midwives caring for these groups was considered higher. The challenges identified were categorized into five main themes, including: 1) interdisciplinary collaboration; 2) communication with clients; 3) continuity of care; 4) psychosocial care; and 5) vulnerabilities among AS and RRP. CONCLUSIONS: Findings suggest that there is considerable opportunity for improvement in perinatal care for AS and RRP, while also providing direction for future research and interventions. Several concerns raised, especially the availability of professional interpreters and relocations of AS during pregnancy, require urgent consideration at legislative, policy, and practice levels.

Complexity and interplay of faced adversities and perceived health and well-being in highly vulnerable pregnant women-the Mothers of Rotterdam program.

BACKGROUND: Living in socially disadvantaged circumstances has a widespread impact on one's physical and mental health. That is why individuals living in this situation are often considered vulnerable. When pregnant, not only the woman's health is affected, but also that of her (unborn) child. It is well accepted that vulnerable populations experience worse (perinatal) health, however, little is known about the lived adversities and health of these vulnerable individuals. OBJECTIVES: With this article, insights into this group of highly vulnerable pregnant women are provided by describing the adversities these women face and their experienced well-being. METHODS: Highly vulnerable women were recruited when referred to tailored social care during pregnancy. Being highly vulnerable was defined as facing at least three different adversities divided over two or more life-domains. The heat map method was used to assess the interplay between adversities from the different life domains. Demographics and results from the baseline questionnaires on self-sufficiency and perceived health and well-being were presented. RESULTS: Nine hundred nineteen pregnant women were referred to social care (2016-2020). Overall, women had a median of six adversities, distributed over four life-domains. The heat map revealed a large variety in lived adversities, which originated from two parental clusters, one dominated by financial adversities and the other by a the combination of a broad range of adversities. The perceived health was moderate, and 25-34% experienced moderate to severe levels of depression, anxiety or stress. This did not differ between the two parental clusters. CONCLUSIONS: This study shows that highly vulnerable pregnant women deal with multiple adversities affecting not only their social and economic position but also their health and well-being.

Development of a Blueprint for Integrated Care for Vulnerable Pregnant Women.

PURPOSE: There has been increasing awareness of perinatal health and organisation of maternal and child health care in the Netherlands as a result of poor perinatal outcomes. Vulnerable women have a higher risk of these poor perinatal outcomes and also have a higher chance of receiving less adequate care. Therefore, within a consortium, embracing 100 organisations among professionals, educators, researchers, and policymakers, a joint aim was defined to support maternal and child health care professionals and social care professionals in providing adequate, integrated care for vulnerable pregnant women. DESCRIPTION: Within the consortium, vulnerability is defined as the presence of psychopathology, psychosocial problems, and/or substance use, combined with a lack of individual and/or social resources. Three studies focussing on population characteristics, organisation of care and knowledge, skills, and attitudes of professionals regarding vulnerable pregnant women, were carried out. Outcomes were discussed in three field consultations. ASSESSMENT: The outcomes of the studies, followed by the field consultations, resulted in a blueprint that was subsequently adapted to local operational care pathways in seven obstetric collaborations (organisational structures that consist of obstetricians of a single hospital and collaborating midwifery practices) and their collaborative partners. We conducted 12 interviews to evaluate the adaptation of the blueprint to local operational care pathways and its' embedding into the obstetric collaborations. CONCLUSION: Practice-based research resulted in a blueprint tailored to the needs of maternal and child health care professionals and social care professionals and providing structure and uniformity to integrated care provision for vulnerable pregnant women.

Defining and describing birth centres in the Netherlands - a component study of the Dutch Birth Centre Study.

BACKGROUND: During the last decade, a rapid increase of birth locations for low-risk births, other than conventional obstetric units, has been seen in the Netherlands. Internationally some of such locations are called birth centres. The varying international definitions for birth centres are not directly applicable for use within the Dutch obstetric system. A standard definition for a birth centre in the Netherlands is lacking. This study aimed to develop a definition of birth centres for use in the Netherlands, to identify these centres and to describe their characteristics. METHODS: International definitions of birth centres were analysed to find common descriptions. In July 2013 the Dutch Birth Centre Questionnaire was sent to 46 selected Dutch birth locations that might qualify as birth centre. Questions included: location, reason for establishment, women served, philosophies, facilities that support physiological birth, hotel-facilities, management, environment and transfer procedures in case of referral. Birth centres were visited to confirm the findings from the Dutch Birth Centre Questionnaire and to measure distance and time in case of referral to obstetric care. RESULTS: From all 46 birth locations the questionnaires were received. Based on this information a Dutch definition of a birth centre was constructed. This definition reads: "Birth centres are midwifery-managed locations that offer care to low risk women during labour and birth. They have a homelike environment and provide facilities to support physiological birth. Community midwives take primary professional responsibility for care. In case of referral the obstetric caregiver takes over the professional responsibility of care." Of the 46 selected birth locations 23 fulfilled this definition. Three types of birth centres were distinguished based on their location in relation to the nearest obstetric unit: freestanding (n = 3), alongside (n = 14) and on-site (n = 6). Transfer in case of referral was necessary for all freestanding and alongside birth centres. Birth centres varied in their reason for establishment and their characteristics. CONCLUSIONS: Twenty-three Dutch birth centres were identified and divided into three different types based on location according to the situation in September 2013. Birth centres differed in their reason for establishment, facilities, philosophies, staffing and service delivery.

A newly developed scavenging system for administration of nitrous oxide during labour: safe occupational use.

OBJECTIVE: Nitrous oxide (N(2) O) is routinely used as an analgesic in obstetrics during labour. Epidemiological studies have linked chronic occupational exposure to N(2) O to specific health problems, including reproductive risks. Occupational exposure limits (OELs) allow the use of N(2) O once appropriate preventive and safety measures have been taken. We assessed the effectiveness of a scavenger system (Anevac P-system®, Medicvent Heinen & Löwestein Benelux, Barneveld, the Netherlands) applied in N(2) O administration during labour in a midwifery-led birthing centre in the Netherlands. METHODS: After informed consent, non-pregnant midwives were trained to administer N(2) O. N(2) O was delivered as a 50 : 50 mixture with oxygen and was self administered by the patient. The scavenging device, containing a double mask and a chin mask, was connected to the local evacuation system vented outside the building. Data on the 8-h time-weighted average (8-h TWA) as well as the 15-min TWA (15-min TWA) were obtained. RESULTS: Thirteen patients were included. Six patients were included in the first study period. In this period the 8-h TWA was not exceeded, however, in all patients, the 15-min TWA occasionally exceeded the OELs. After four additional measures, seven patients were included. After implementation of these measures, the 8-h TWA and 15-min TWA never exceeded the OELs. System leakage was not observed during both study periods. CONCLUSION: The Anevac P-scavenging system during N(2) O analgesia in labour prevents exceeding OELs in professional workers. The scavenging system appeared acceptable and effective, and can be considered in hospital settings that use N(2) O as analgesic during labour.

Regional differences in Dutch maternal mortality.

OBJECTIVE: To study regional differences in maternal mortality in the Netherlands. DESIGN: Confidential inquiry into the causes of maternal mortality. SETTING: Nationwide. POPULATION: A total of 3 108 235 live births and 337 maternal deaths. METHODS: Data analysis of all maternal deaths in the period 1993-2008. MAIN OUTCOME MEASURE: Maternal mortality. RESULTS: The overall national maternal mortality ratio was 10.8 per 100 000 live births. In the 12 provinces of the Netherlands, the maternal mortality ratio ranged from 6.2 in Noord Brabant to 16.3 per 100 000 live births in Zeeland. In the four largest cities, maternal mortality varied from 9.3 in Amsterdam to 21.0 in Rotterdam. At a national level, the most frequent direct cause was pre-eclampsia. Increased risks for maternal mortality were found for women living in deprived neighbourhoods (RR 1.41), women from non-Western origin (RR 1.59), and women who were 35 years or older (RR 1.61). CONCLUSION: There are significant variations in maternal mortality ratios in the Netherlands between cities, provinces, and neighbourhoods. In addition, higher maternal mortality was observed in women of non-Western origin and in women who were 35 years of age or older.

An urban perinatal health programme of strategies to improve perinatal health.

Promotion of a healthy pregnancy is a top priority of the health care policy in many European countries. Perinatal mortality is an important indicator of the success of this policy. Recently, it was shown that the Netherlands has relatively high perinatal death rates when compared to other European countries. This is in particular true for large cities where perinatal mortality rates are 20-50% higher than elsewhere. Consequently in the Netherlands, there is heated debate on how to tackle these problems. Without the introduction of measures throughout the entire perinatal health care chain, pregnancy outcomes are difficult to improve. With the support of health care professionals, the City of Rotterdam and the Erasmus University Medical Centre have taken the initiative to develop an urban perinatal health programme called 'Ready for a Baby'. The main objective of this municipal 10-year programme is to improve perinatal health and to reduce perinatal mortality in all districts to at least the current national average of l0 per 1000. Key elements are the understanding of the mechanisms of the large health differences between women living in deprived and non-deprived urban areas. Risk guided care, orientation towards shared-care and improvement of collaborations between health care professionals shapes the interventions that are being developed. Major attention is given to the development of methods to improve risk-selection before and during pregnancy and methods to reach low-educated and immigrant groups.

Increased adverse perinatal outcome of hospital delivery at night.

OBJECTIVE: To determine whether delivery in the evening or at night and some organisational features of maternity units are related to perinatal adverse outcome. DESIGN: A 7-year national registry-based cohort study. SETTING: All 99 Dutch hospitals. POPULATION: From nontertiary hospitals (n = 88), 655 961 singleton deliveries from 32 gestational weeks onwards, and, from tertiary centres (n = 10), 108 445 singleton deliveries from 22 gestational weeks onwards. METHODS: Multiple logistic regression analysis of national perinatal registration data over the period 2000-2006. In addition, multilevel analysis was applied to investigate whether the effects of time of delivery and other variables systematically vary across different hospitals. MAIN OUTCOME MEASURES: Delivery-related perinatal mortality (intrapartum or early neonatal mortality) and combined delivery-related perinatal adverse outcome (any of the following: intrapartum or early neonatal mortality, 5-minute Apgar score below 7, or admission to neonatal intensive care). RESULTS: After case mix adjustment, relative to daytime, increased perinatal mortality was found in nontertiary hospitals during the evening (OR, 1.32; 95% CI, 1.15-1.52) and at night (OR, 1.47; 95% CI, 1.28-1.69) and, in tertiary centres, at night only (OR, 1.20; 95% CI, 1.06-1.37). Similar significant effects were observed using the combined perinatal adverse outcome measure. Multilevel analysis was unsuccessful; extending the initial analysis with nominal hospital effects and hospital-delivery time interaction effects confirmed the significant effect of night in nontertiary hospitals, whereas other organisational effects (nontertiary, tertiary) were taken up by the hospital terms. CONCLUSION: Hospital deliveries at night are associated with increased perinatal mortality and adverse perinatal outcome. The time of delivery and other organisational features representing experience (seniority of staff, volume) explain hospital-to-hospital variation.

[Perinatal outcomes in the four largest cities and in deprived neighbourhoods in The Netherlands]. / Perinatale uitkomsten in de vier grote steden en de prachtwijken in Nederland.

OBJECTIVE: To analyse the association between neighbourhood, ethnicity and adverse perinatal outcome in pregnant women from the 4 largest cities (Amsterdam, Rotterdam, The Hague and Utrecht; G4) and elsewhere in The Netherlands. DESIGN: Descriptive, retrospective. METHOD: The perinatal outcome of 877,816 single pregnancies during the years 2002-2006, derived from The Netherlands Perinatal Registry, was analysed for the ethnicity (Western or non-Western) and the neighbourhood (deprived or not) of the pregnant women in the G4 and elsewhere in The Netherlands. Adverse perinatal outcome was defined as perinatal mortality, congenital abnormalities, intra-uterine growth restriction, preterm birth, Apgar score after 5 minutes < 7 and/or admission to a neonatal intensive-care unit. RESULTS: The overall perinatal mortality rate was higher in the G4 than elsewhere in The Netherlands (11.1 per thousand versus 9.3 per thousand; p < 0.001; 95% confidence interval of the difference: 1.2-2.4 per thousand). The same was true for the sum of adverse perinatal outcomes (154.9 per thousand versus 138.9 per thousand). In the G4 the perinatal mortality among non-Western women was higher than among Western women (13.2 per thousand versus 9.5 per thousand). Residing in Dutch deprived neighbourhoods was associated with a higher perinatal mortality than outside deprived neighbourhoods (13.5 per thousand versus 9.3 per thousand). The relative risks of living in deprived neighbourhoods for adverse pregnancy outcomes are higher among Western than among non-Western women. CONCLUSION: Pregnant women in the G4 have an increased risk ofadverse perinatal outcomes. The risks of residing in a deprived neighbourhood are even higher, especially among Western women. The findings are important for new strategies to improve perinatal outcomes.