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Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence. Methods: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence. Results: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence. Conclusions: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations. [ABSTRACT FROM AUTHOR]

Objectives. To explore the relationship between the period preceding diagnosis and the way parents of children with cystic fibrosis (CF) experience and handle their child's disease. Design. A retrospective study. Setting. CF Center "Noordwest Nederland," the Netherlands. Participants. Participants were the parents of children Main Outcome Measures. Experience of the prediagnostic period, contact with the medical profession, coping, future perspective, and attitudes toward neonatal screening for CF. Results. Parents of 55 children were eligible for study participation; 45 were enrolled. Retrospectively, the period preceding an early diagnosis was less negatively experienced by parents than the period preceding a late diagnosis. Parents of children with an early diagnosis had retrospectively more confidence in the medical profession before confirmation of diagnosis. In general, parents in this study used adaptive coping styles. Duration of prediagnostic period was not significantly related to future perspective. Hopelessness seemed to be mainly determined by a severe course of disease as experienced by the parents. Ninety-eight percent of all parents were in favor of neonatal screening for CF. Conclusions. A short prediagnostic period is associated with less negative feelings and increased confidence in the medical profession among parents of children with CF. Neonatal screening for CF may be of benefit to parents by removing the stress of a delayed diagnosis. Pediatrics 2003;111:346-350; cystic fibrosis, diagnosis, parents, children, prediagnostic period, neonatal screening., ABBREVIATIONS. CF, cystic fibrosis; BHS, Beck Hopelessness Scale; OR, odds ratio; CI, confidence interval. Cystic fibrosis (CF) is a serious life-threatening disease, leading to malnutrition and chronic lung infection. (1) [...]