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.

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.