How to move forward in shared decision-making in pediatric palliative care.

Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared decision-making process and ensure high-quality pediatric palliative care for every child. Working on these priorities will improve shared decision-making and thereby enhance high-quality pediatric palliative care around the globe.

Pediatric palliative care across continents: Communication and shared-decision-making.

Despite the significant growth and development of pediatric palliative care worldwide, significant challenges remain. One of those challenges is shared decision-making, by which parents, families and professionals all work together to develop a plan of care that reflects both the medical facts and the patient's family's values. Shared decision-making about palliative care and about death and dying may mean different things in different cultures and countries. It is therefore important to learn and compare practices around the world.

Improvement and implementation of a national individual care plan in paediatric palliative care: a study protocol.

INTRODUCTION: Paediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions, and can involve complex high-tech care, which can last for months or years. In 2015, the National Individual Care Plan (ICP) for PPC was developed and has shown to be successful. The ICP can be seen as an instrument to facilitate coordination, quality and continuity of PPC. However, in practice, an ICP is often completed too late and for too few children. We aim to improve the coordination, quality and continuity of care for every child with a life-threatening or life-limiting condition and his/her family by further developing and implementing the ICP in the Netherlands. METHODS AND ANALYSIS: To evaluate the original ICP, ICP 1.0, interviews and questionnaires will be held among parents of children who have or have had an ICP 1.0 and healthcare professionals (HCPs) who used ICP 1.0. Based on the results, ICP 1.0 will be further developed. An implementation strategy will be written and the renewed ICP, ICP 2.0, will be nationally tested in an implementation period of approximately 7 months. During the implementation period, ICP 2.0 will be used for all children who are registered with Children's Palliative Care teams. After the implementation period, ICP 2.0 will be evaluated using interviews and questionnaires among parents of children who received ICP 2.0 and HPCs who worked with ICP 2.0. Based on these results, ICP 2.0 will be further optimised into the final version: ICP 3.0. ETHICS AND DISSEMINATION: This study received ethical approval. The ICP 3.0 will be disseminated through the Dutch Centre of Expertise in Children's Palliative Care, to ensure wide availability for the general public and HCPs within PPC. Additionally, we aim to publish study results in open-access, peer-reviewed journals and to present results at national and international scientific meetings.

Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.

Data repositories, like research biobanks, seek to optimise the number of responding participants while simultaneously attempting to increase the amount of data donated per participant. Such efforts aim to increase the repository's value for its uses in medical research to contribute to improve health care, especially when data linkage is permitted by participants. We investigated individuals' motives for participating in such projects and potential reasons for their withdrawal from participation in a population-based biobank. In addition, we analysed how these motives were related to various characteristics of the participants and their willingness to permit data linkage to their personal data for research. These questions were explored using a sample of participants in the Dutch Lifelines biobank (n = 2615). Our results indicated that motives for participation and withdrawal were premised on benefits or harm to society and to the individuals themselves. Although general values and trust both played key roles in participation, potential withdrawal and willingness to permit data linkage, they were differentially associated with motives for participation and withdrawal. These findings support and nuance previous findings by highlighting the distinctiveness and complexity of decision making regarding participation in or withdrawal from data donation. We suggest some new directions for improving recruitment, retention and safeguarding strategies in biobanking. In addition, our data provide initial evidence regarding how factors may relate with the probability that individuals will agree to data linkages, when controlling for their unique effects. Future research should further investigate how perceptions of harm and benefits may influence decision making on withdrawal of participation.

Effects of psychological treatment of mental health problems in pregnant women to protect their offspring: randomised controlled trial.

BACKGROUND: Perinatal depression and anxiety are associated with unfavourable child outcomes. AIMS: To assess among women with antenatal depression or anxiety the effectiveness of prenatally initiated cognitive-behavioural therapy (CBT) on mother and child compared with care as usual (CAU). Trial registration: Netherlands Trial Register number NTR2242. METHOD: Pregnant women (n = 282) who screened positive for symptoms of depression and/or anxiety were randomised to either CBT (n = 140) or CAU (n = 142). The primary outcome was child behavioural and emotional problems at age 18 months, assessed using the Child Behavior Checklist (CBCL). Secondary outcomes were maternal symptoms during and up to 18 months after pregnancy, neonatal outcomes, mother-infant bonding and child cognitive and motor development at age 18 months. RESULTS: In total, 94 (67%) women in the CBT group and 98 (69%) in the CAU group completed the study. The mean CBCL Total Problems score was non-significantly higher in the CBT group than in the CAU group (mean difference: 1.38 (95% CI -1.82 to 4.57); t = 0.85, P = 0.399). No effects on secondary outcomes were observed except for depression and anxiety, which were higher in the CBT group than in the CAU group at mid-pregnancy. A post hoc analysis of the 98 women with anxiety disorders showed lower infant gestational age at delivery in the CBT than in the CAU group. CONCLUSIONS: Prenatally initiated CBT did not improve maternal symptoms or child outcomes among non-help-seeking women with antenatal depression or anxiety. Our findings are not in line with present recommendations for universal screening and treatment for antenatal depression or anxiety, and future work may include the relevance of baseline help-seeking.

Low socioeconomic status increases effects of negative life events on antenatal anxiety and depression.

PROBLEM: Low socioeconomic status and prior negative life events are documented risk factors for antenatal anxiety and depression, preterm birth and birth weight. We aimed to asses whether the adverse effects of prior negative life events increase with lower socioeconomic status and which aspects of socioeconomic status are most relevant. METHODS: We performed a population-based cohort study in the Netherlands including 5398 women in their first trimester of pregnancy. We assessed the number of negative life events prior to pregnancy, aspects of paternal and maternal socio-economic position and symptoms of anxiety and depression. Associations of the number of prior negative life events with anxiety, depression, low birth weight and gestational age were quantified. FINDINGS: The number of prior negative life events, particularly when they had occurred in the two years before pregnancy and maternal aspects of low socioeconomic status (educational level, unemployment and income) were associated with antenatal anxiety and depression. Furthermore, low socioeconomic status increased the adverse effects of prior negative life events. Obstetric outcomes showed similar trends, although mostly not statistically significant. DISCUSSION: Low socioeconomic status and prior negative life events both have an adverse effect on antenatal anxiety and depression. Furthermore, low socioeconomic status increases the adverse impact of prior negative life events on anxiety and depressive symptoms in pregnancy. CONCLUSION: Interventions for anxiety and depression during pregnancy should be targeted particularly to unemployed, less-educated or low-income women who recently experienced negative life events.

Respiratory Health in Adolescents Born Moderately-Late Preterm in a Community-Based Cohort.

OBJECTIVES: To determine the long-term effects of moderately-late preterm (MLP) birth on respiratory and allergic symptoms, lung function, and exercise capacity in adolescence. STUDY DESIGN: Outcome variables in this prospective cohort were prevalence of symptoms determined by International Study of Asthma and Allergies in Childhood questionnaires, lung function, and exercise measures. RESULTS: Response rate was 47% and did not vary importantly by background characteristics. In total, 71 children (aged 13-14 years) participated in the measurements, 37 born MLP and 34 born full term. Both groups were comparable in height, weight, and exercise activities but differed in gestational age (MLP 34 ± 1 weeks, full term 39 ± 0.9 weeks) and birth weight (MLP 2442 ± 539 g, full term 3693 ± 393 g). Adolescents born MLP reported more (dry) cough (MLP 25% vs those born full term 3%, P = .016) and hay fever (MLP 34% vs those born full term 9%, P = .015). Adolescents born MLP did not report more wheeze, dyspnea, asthma, and eczema. Most lung function measurements were within the normal range for both groups, except peak expiratory flow (MLP 86% of predicted vs those born full term 93%, P = .05) and maximum expiratory flow when 75% of the forced vital capacity has been exhaled (MLP 86% predicted vs those born full term 96% predicted, P = .06), which were at the lower limit of normal. We observed no differences between the groups in exercise parameters. CONCLUSION: Moderately late preterm birth has little effect on respiratory health in adolescence. Adolescents born MLP report few symptoms, have only slightly more lung function abnormalities than those born full term, and do not differ in the maximal exercise test and in physical activity level. TRIAL REGISTRATION: ISRCTN 80622320.

Stressful events and continued smoking and continued alcohol consumption during mid-pregnancy.

AIM: to examine whether the severity of different categories of stressful events is associated with continued smoking and alcohol consumption during mid-pregnancy. Also, we explored the explanation of these associations by anxiety and depressive symptoms during pregnancy. Finally, we studied whether the severity of stressful events was associated with the amount of cigarettes and alcohol used by continued users. METHOD: We conducted a cross-sectional analysis using data from a population-based prospective cohort study. Pregnant women were recruited via midwifery practices throughout The Netherlands. We analyzed women who continued smoking (n = 113) or quit (n = 290), and women who continued alcohol consumption (n = 124) or quit (n = 1403) during pregnancy. Smoking, alcohol consumption, and perceived severity of stressful events were measured at 19 weeks of gestation. The State Trait Anxiety Inventory and the Edinburgh Postnatal Depression Scale were filled out at 14 weeks of gestation. Odds ratios were calculated as association measures and indicated the relative increase for the odds of continuation of smoking and alcohol consumption for the maximum severity score compared to the minimum score. FINDINGS: Severity of the following stressful event categories was associated with continued alcohol consumption: 'conflict with loved ones' (OR = 10.4, p<0.01), 'crime related' (OR= 35.7, p<0.05), 'pregnancy-specific' (OR = 13.4, p<0.05), and the total including all events (OR = 17.2, p<0.05). Adjustment for potential confounders (age, parity and educational level) did not notably change the estimates. There was no association of anxiety and depressive symptoms with continued smoking or alcohol consumption. No associations emerged for continued smoking and severity of stressful events. The amount of cigarettes and alcohol consumption among continued users was not associated with severity of stressful events. CONCLUSIONS: Our findings may be relevant for health care providers, in particular midwives and general practitioners. The impact of stressful events may be considered when advising pregnant women on smoking and alcohol consumption.

Associations of life events during pregnancy with longitudinal change in symptoms of antenatal anxiety and depression.

OBJECTIVE: to investigate the association of life events during pregnancy with change in antenatal anxiety and depression symptoms. We distinguished pregnancy related and non-pregnancy related events and assessed specificity of these associations for depressive or anxious symptoms. In addition, we investigated whether the associations were affected by personality or childhood adversities. DESIGN: observational prospective cohort study SETTING: primary and secondary obstetric care centres in the Netherlands PARTICIPANTS: 1603 women during their first trimester of pregnancy between May 2010 and May 2012 MEASUREMENTS AND FINDINGS: we performed linear regression analyses to test the associations of pregnancy related, non-pregnancy related life events, childhood adversities and the personality traits neuroticism and extraversion with the change in symptoms of anxiety (State Trait Anxiety Inventory) and depression (Edinburgh Postnatal Depression Scale) from week 12 to week 36. Life events during pregnancy were associated with increasing antenatal symptoms of anxiety and depression. Effect sizes associated with the highest numbers of events observed ranged from 0.59 to 1.31. Pregnancy related events were specifically associated with increasing symptoms of anxiety (p=0.009), whereas non-pregnancy related events were merely associated with an increase in symptoms of depression (p<0.001). Neither personality traits nor childhood trauma influenced the associations under study. KEY CONCLUSIONS: the most important finding is that pregnancy related life events during pregnancy increase levels of antenatal anxiety, whereas depression levels increase when women experience life events that are unrelated to pregnancy. Furthermore, non-pregnancy related events show stronger associations with increases in symptoms of anxiety or depression compared to pregnancy related events. IMPLICATIONS FOR PRACTICE: our findings may help midwives to tailor psychosocial care to the specific risks of the pregnant woman which may eventually have a positive impact on the health of mother and child.

Postpartum depression predicts offspring mental health problems in adolescence independently of parental lifetime psychopathology.

BACKGROUND: Postpartum depression (PPD) follows 5-15% of the life births and forms a major threat to the child's mental health and psychosocial development. However, the nature, continuance, and mediators of the association of postpartum depression (PPD) with the child's mental health are not well understood. The aim of this study was to investigate whether an association between PPD and adolescent mental problems is explained by parental psychopathology and whether the association shows specificity to the internalizing or externalizing domain. METHODS: 2729 adolescents aged 10-15 years from the TRacking Adolescents' Individual Life Survey (TRAILS) were included. Both PPD and parental lifetime history of psychopathology were assessed by parent report. Adolescents' psychopathology was assessed using the Achenbach scales (parent, teacher and self report). Linear regression was used to examine the association between PPD and adolescent mental health. RESULTS: We found a statistically significant association of adolescents' internalizing problems with maternal PPD, which remained when adjusted for parental psychopathology. We found no association for externalizing problems. LIMITATIONS: Underreporting of both PPD and lifetime parental psychopathology may have occurred due to their retrospective assessment. CONCLUSIONS: The association of PPD with internalizing but not externalizing problems extends into adolescence. Parental psychopathology does not explain this association suggesting a direct psychological effect on the child postpartum. If this effect appears causal, early treatment of parental psychopathology may prevent internalizing psychopathology in the offspring, ultimately in adolescence.

PRegnancy Outcomes after a Maternity Intervention for Stressful EmotionS (PROMISES): study protocol for a randomised controlled trial.

BACKGROUND: There is ample evidence from observational prospective studies that maternal depression or anxiety during pregnancy is a risk factor for adverse psychosocial outcomes in the offspring. However, to date no previous study has demonstrated that treatment of depressive or anxious symptoms in pregnancy actually could prevent psychosocial problems in children. Preventing psychosocial problems in children will eventually bring down the huge public health burden of mental disease. The main objective of this study is to assess the effects of cognitive behavioural therapy in pregnant women with symptoms of anxiety or depression on the child's development as well as behavioural and emotional problems. In addition, we aim to study its effects on the child's development, maternal mental health, and neonatal outcomes, as well as the cost-effectiveness of cognitive behavioural therapy relative to usual care. METHODS/DESIGN: We will include 300 women with at least moderate levels of anxiety or depression at the end of the first trimester of pregnancy. By including 300 women we will be able to demonstrate effect sizes of 0.35 or over on the total problems scale of the child behavioural checklist 1.5-5 with alpha 5% and power (1-beta) 80%.Women in the intervention arm are offered 10-14 individual cognitive behavioural therapy sessions, 6-10 sessions during pregnancy and 4-8 sessions after delivery (once a week). Women in the control group receive care as usual.Primary outcome is behavioural/emotional problems at 1.5 years of age as assessed by the total problems scale of the child behaviour checklist 1.5-5 years.Secondary outcomes will be mental, psychomotor and behavioural development of the child at age 18 months according to the Bayley scales, maternal anxiety and depression during pregnancy and postpartum, and neonatal outcomes such as birth weight, gestational age and Apgar score, health care consumption and general health status (economic evaluation). TRIAL REGISTRATION: Netherlands Trial Register (NTR): NTR2242.