End of life care for infants, children and young people with life-limiting conditions: planning and management: the NICE guideline 2016

Aidoo, Ella; Rajapakse, Dilini

doi:10.1136/archdischild-2017-312767

Cited by 13 publications

(14 citation statements)

References 5 publications

(1 reference statement)

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“…The search strategy was developed based on suggestions from the COSMIN guidelines, incorporating construct, population and instrument search together with the COSMIN psychometric properties filter (see Supplemental File 1). 25,[33][34][35] Inclusion/exclusion criteria Study eligibility criteria were developed according to the COSMIN guidelines 30 (see Table 1). All published peerreviewed studies, regardless of study design, that reported the use of pain assessment tools in paediatric palliative settings completed by the parent or clinician of the infants, children and young people or the patient themselves were considered for inclusion in the review.…”

Section: Search Strategymentioning

confidence: 99%

Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice

et al. 2021

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Background: Assessing pain in infants, children and young people with life-limiting conditions remains a challenge due to diverse patient conditions, types of pain and often a reduced ability or inability of patients to communicate verbally. Aim: To systematically identify pain assessment tools that are currently used in paediatric palliative care and examine their psychometric properties and feasibility and make recommendations for clinical practice. Design: A systematic literature review and evaluation of psychometric properties of pain assessment tools of original peer-reviewed research published from inception of data sources to April 2021. Data sources: PsycINFO via ProQuest, Web of Science Core, Medline via Ovid, EMBASE, BIOSIS and CINAHL were searched from inception to April 2021. Hand searches of reference lists of included studies and relevant reviews were performed. Results: From 1168 articles identified, 201 papers were selected for full-text assessment. Thirty-four articles met the eligibility criteria and we examined the psychometric properties of 22 pain assessment tools. Overall, the Faces Pain Scale-Revised (FPS-R) had high cross-cultural validity, construct validity (hypothesis testing) and responsiveness; while the Faces, Legs, Activity, Cry and Consolability (FLACC) scale and Paediatric Pain Profile (PPP) had high internal consistency, criterion validity, reliability and responsiveness. The number of studies per psychometric property of each pain assessment tool was limited and the methodological quality of included studies was low. Conclusion: Balancing aspects of feasibility and psychometric properties, the FPS-R is recommended for self-assessment, and the FLACC scale/FLACC Revised and PPP are the recommended observational tools in their respective age groups.

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Section: Search Strategymentioning

confidence: 99%

Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice

et al. 2021

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“…PPC teams in China had considerable gaps in staff composition regarding the types of professionals and the numbers of people providing PPC services. The American Academy of Pediatrics recommends that mature PPC teams should include physicians, nurses, social workers, case managers, spiritual care providers, bereavement specialists, and child life specialists 12,13 . However, approximately one‐third of Chinese PPC teams comprised physicians and nurses alone; a few comprised physicians alone.…”

Section: Discussionmentioning

confidence: 99%

“…The American Academy of Pediatrics recommends that mature PPC teams should include physicians, nurses, social workers, case managers, spiritual care providers, bereavement specialists, and child life specialists. 12 , 13 However, approximately one‐third of Chinese PPC teams comprised physicians and nurses alone; a few comprised physicians alone. No teams included spiritual support workers, bereavement specialists, child life specialists, or case managers; China has a serious shortage of qualified personnel in these fields.…”

Section: Discussionmentioning

confidence: 99%

Development levels of pediatric palliative care teams and the extent of palliative care understanding and implementation among pediatric oncologists in China

Cai

Guo

Wang³

et al. 2021

Pediatric Investigation

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Importance Pediatric palliative care (PPC) is an interdisciplinary collaboration that focuses on the prevention and relief of patient suffering. PPC has emerged as a critical field of medical expertise and practice. However, no information is available regarding the progress of PPC in the Chinese mainland. Objective This study investigated the geographic distribution, team structure, and services of PPC teams in the Chinese mainland. It also investigated the level of understanding and implementation among pediatric oncologists regarding PPC. Methods The PPC subspecialty group of the Pediatrics Society of the Chinese Medical Association included 45 PPC teams. The team structure and services were investigated using questionnaires mailed to the team leader of each PPC team. In addition, we sent questionnaires regarding the level of PPC understanding and implementation of PPC practices to 170 pediatric oncologists in 11 hospitals. Results The geographical distribution of PPC teams is uneven in China. Most PPC teams are concentrated in the eastern provincial capital of China. Most PPC teams had limited staff and services. The level of PPC understanding was considerably limited across all demographics; most pediatric oncologists reported “some understanding” (n = 71, 41.8%) or “poor understanding” (n = 50, 29.4%). Only 62.9% of pediatric oncologists had experience providing advice to family members regarding PPC matters. Interpretation China is currently experiencing a critical shortage of PPC resources. Most pediatric oncologists had a limited understanding of PPC and reported limited practical implementation of PPC, which leads to underutilization of PPC resources.

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“…A focus on audit and quality improvement is key to the delivery of high-quality palliative care in PICU. There are many evidence-based guidelines [62] which specify standards for provision of a comprehensive paediatric palliative care service. Undertaking audit against such guidelines is essential to gauge whether care is adequate and also provides the impetus to develop local quality improvement plans.…”

Section: Audit Quality Assurance and Follow-upmentioning

confidence: 99%

Palliative Care of the Infant and Child in the Paediatric Intensive Care Unit

McAllister¹,

Crowe²,

Charra³

et al. 2021

Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care

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In this chapter we discuss the delivery of palliative care in the paediatric intensive care unit environment. Illustrated by challenging cases, we describe the role of intensive care in symptom management for the child with terminal or life-limiting illness. We detail the importance of a multidisciplinary team and their roles in the provision of individualised care for the child and their family. The importance of family-centred care and advance care planning is expanded upon. In addition, we explore end of life issues that are particular to children in intensive care such as withdrawal of life-sustaining therapies and organ donation. Finally, we discuss how to ensure the delivery of high-quality palliative care in the paediatric intensive care environment.

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End of life care for infants, children and young people with life-limiting conditions: planning and management: the NICE guideline 2016

Cited by 13 publications

References 5 publications

Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice

Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice

Development levels of pediatric palliative care teams and the extent of palliative care understanding and implementation among pediatric oncologists in China

Palliative Care of the Infant and Child in the Paediatric Intensive Care Unit

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