Introduction Breakthrough pain is common in children and adults with cancer and other conditions, including those approaching end-of-life, although it is often poorly managed, possibly partly due to a lack of validated assessment tools. This review aims to (1) identify all available instruments measuring breakthrough pain in infants, children, adolescents or adults and (2) critically appraise, compare and summarise the quality of the psychometric properties of the identified instruments using COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) criteria. Methods and analysis Two searches will be carried out between October 2019 and January 2020, one for each aim of the review. The Cochrane Library, International Prospective Register of Systematic Reviews, Embase, Cumulative Index of Nursing and Allied Health Literature, Medical Literature Analysis and Retrieval System Online (MEDLINE), PsycINFO, Web of Science Core Collection, Google Scholar, the ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey databases will be searched from database inception until the date the search is conducted. Reference lists of eligible articles will be screened and authors in the field contacted. For search 1, articles will be screened by two reviewers by abstract, and full-text where necessary, to identify if a breakthrough pain assessment was used. Search 2 will then be conducted to identify studies evaluating measurement properties of these assessments. Two reviewers will screen articles from search 2 by title and All potentially relevant studies will be screened by full text by both reviewers. For search 2, data will be extracted in parallel with the quality assessment process, as recommended by COSMIN. Two reviewers will assess methodological quality using the COSMIN Risk of Bias checklist and the COSMIN updated criteria for good measurement properties. Findings will be summarised and, if possible, data will be pooled using meta-analysis. The quality of the evidence will be graded and summarised using the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) guidelines. Ethics and dissemination Results of this review will be submitted for publication in a peer review journal and presented at conferences. PROSPERO registration number CRD42019155583.

There is a paucity of evidence on the role, use, benefit and challenges of artificial nutrition and hydration (ANH) in children at end of life. Parents express the difficulty they face with making the decision to withdraw ANH. Decision-making on the role of ANH in an individual child requires careful multidisciplinary team deliberation and clear goals of care with children and families. Four paediatric palliative care specialist centres reviewed the current literature and developed consensus guidelines on ANH at end of life. These guidelines seek to provide a practical approach to clinical decision-making on the role of ANH in a child or young person entering the end-of-life phase.

Purpose of reviewContinual refinement and further stratification of childhood cancer treatment has led to increased survivorship with recognized improvements in many long-term health outcomes. Despite this progress, persisting pain prevalence in childhood cancer survivors is increasing and emerging as a significant long-term health concern.Recent findingsCurrently, there is no guidance on how to approach and manage persisting pain in survivors of childhood cancer.SummaryClinicians should work with children and young people to optimize the management of pain and other symptoms on treatment. Focusing on an early post treatment screening for pain and other symptoms (including sleep and fatigue), and the role of on-going analgesic use. Follow-up should offer a multidisciplinary approach, aimed at lessening reliance on pharmacological approaches to pain management, addressing psychological concerns and promoting increased physical activity. The onus is on clinicians to mitigate the long-term risk of pharmacological reliance, particularly opioid dependency, in patients leaving their care and heading into adulthood. In this article, we highlight the emerging evidence of persisting pain in survivors of childhood cancer as a significant long-term health outcome and consider some initial principles of management.

Objectives No randomised controlled trials have been conducted for breakthrough pain in paediatric palliative care and there are currently no standardised outcome measures. The DIPPER study aims to establish the feasibility of conducting a prospective randomised controlled trial comparing oral and transmucosal administration of opioids for breakthrough pain. The aim of the current study was to achieve consensus on design aspects for a small-scale prospective study to inform a future randomised controlled trial of oral morphine, the current first-line treatment, versus transmucosal diamorphine. Methods The nominal group technique was used to achieve consensus on best practice for mode of administration, dose regimen and a range of suitable pain intensity outcome measures for transmucosal diamorphine in children and young people with breakthrough pain. An expert panel of ten clinicians in paediatric palliative care and three parent representatives participated. Consensus was achieved when agreement was reached and no further comments from participants were forthcoming. Results The panel favoured the buccal route of administration, with dosing according to the recommendations in the Association for Paediatric Palliative Medicine formulary (fifth Edition, 2020). The verbal Numerical Rating Scale was selected to measure pain in children 8 years old and older, the Faces Pain Scale-Revised for children between 4 and 8 years old, and Face, Legs, Activity, Cry and Consolability (FLACC)/FLACC-Revised as the observational tools. Conclusions The nominal group technique allowed consensus to be reached for a small-scale, prospective, cohort study and provided information to inform the design of a randomised controlled trial.

Background: There are increasing numbers of children living with conditions that may threaten or shorten their lives. While child mortality has decreased in recent decades, it is estimated 4500 infants, children and young people (0–19 years) die in the United Kingdom every year. Despite a growing increase in clinical provision, there is a clear paucity in research evidence underpinning paediatric palliative care. To support research delivery, a United Kingdom-wide network composed of paediatric palliative care-sector organisations and academics with expertise in the area was developed. The network had a clear vision of establishing partnerships between academia and services delivering paediatric palliative care that would support increased research capacity and delivery in the sector. Objective(s): The overarching aim of the network was to deliver national high-quality research studies, education and materials, and build research capacity. Specific objectives included working closely with seven paediatric palliative care sites to develop guidance on the appropriate methods for undertaking research, the delivery of information and educational resources including a webinar series, offering of mentor opportunities, and the development of a minimum of two bids to National Institute for Health and Care Research related funding pathways. Design: A collaborative design underpinned the network. Network activity included continued partner engagement through online meetings and newsletters, scoping activity to identify research priorities, establishment of research themes, and active engagement and support from national organisations. Patient and public involvement was core to all network activity. Setting: Network engagement largely took place online. The network has a web page hosted on the website of the organisation Together for Short Lives. Partners: Seven paediatric palliative care sites in England and Scotland (six hospices and one National Health Service hospital site) formed the network with input from several academic partners. Results: The network achieved several outputs related to objectives including the submission of two National Institute for Health and Care Research applications for funding, the delivery of five educational webinars, the establishment of an online research toolkit and the development of a research nurse group. Conclusions: Prior to the establishment of the network, there was no national mechanism for co-ordination for research in paediatric palliative care. In bringing together seven partner organisations and clinical and research expertise, the network has supported the foundations upon which to deliver high-quality research in the sector. Future work: Future work is required to support the sustainability of the network including obtaining necessary funding. Key learning from the network can be transferred and replicated across other contexts, including internationally. Grant applications and research themes developed as a result of the network will continue to develop and mature. Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number NIHR135304.

Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric palliative care. Anecdotal evidence suggests that it is frequently underdiagnosed and undertreated, resulting in reduced quality of life. The development of a standardised paediatric breakthrough pain assessment, based on healthcare professionals’ insights, could improve patient outcomes. This study aimed to explore how healthcare professionals define and assess breakthrough pain in paediatric palliative care and their attitudes towards a validated paediatric breakthrough pain assessment. This was a descriptive qualitative interview study. Semi-structured interviews were conducted with 29 healthcare professionals working in paediatric palliative care across the UK. An inductive thematic analysis was conducted on the data. Five themes were generated: ‘the elusive nature of breakthrough pain’, ‘breakthrough pain assessment’, ‘positive attitudes towards’, ‘reservations towards’ and ‘features to include in’ a paediatric breakthrough pain assessment. The definition and assessment of breakthrough pain is inconsistent in paediatric palliative care. There is a clear need for a validated assessment questionnaire to improve assessment, diagnosis and management of breakthrough pain followed by increased healthcare professional education on the concept.