Impact of Specialized Pediatric Palliative Care: A Systematic Review

Marcus, Katherine L.; Santos, Gisella; Ciapponi, Agustín; Comandé, Daniel; Bilodeau, Madeline; Wolfe, Joanne; Dussel, Verónica

doi:10.1016/j.jpainsymman.2019.08.005

Cited by 56 publications

(53 citation statements)

References 69 publications

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“…Our finding that end-of-life care is different for those who receive specialist paediatric palliative care compared to those who do not broadly aligns with three recent reviews about children with all life-limiting conditions. 19,28,29 Two of these reviews 19,29 concluded that specialist intervention appears to offer benefit in terms of improved quality of life. By focusing only on children and young people with cancer, our review highlights the lack of robust evidence pertaining to both quality of life and symptom burden in this population.…”

Section: What This Review Addsmentioning

confidence: 99%

“…26,27 Recent systematic reviews suggest that access to specialist palliative care services is associated with improvements in quality of life, symptom control, perceived support, reduced time in hospital, less invasive treatment and greater advance care planning. 19,28,29 However, these reviews have aggregated the results for children and young people across conditions, and the evidence for those with cancer remains unclear because of conflicting results between individual studies 28 and the lack of work exploring condition-specific factors that may influence access to and benefit from specialist palliative care services. 30,31 A rigorous review of the evidence on the impacts of specialist paediatric palliative care for children and young people with cancer and their families is both crucial to informing debates within paediatric oncology regarding the positioning and role of these specialist services and for future service development.…”

Section: Introductionmentioning

confidence: 99%

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Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

et al. 2020

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Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim: To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design: A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000–2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Results: An evidence base of mainly low- and moderate-quality studies ( n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children’s symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion: Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children’s views, and research is needed to determine whether specialist input improves quality of life.

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Section: What This Review Addsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

et al. 2020

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“…Issues related to race/ethnicity, gender, religion, immigrant status, education level, socioeconomic status, sexual orientation, and indigenous heritage are just a few of the cultural factors that can impact treatment and the experience of care 22–24 . Furthermore, these factors may also play a part in how AYAs and their families view illness, death, the medical system, and decisions 25,26 about the care provided at EOL 27,28 . Developmentally, it is appropriate for AYAs to start exploring what values and belief systems are important to them, which may differ from those of their family of origin.…”

Section: Diversity and Cultural Considerationsmentioning

confidence: 99%

“…For many patients and families, being given the choice to plan is just as important as the location itself. AYA patients most often prioritize their relationships with others when making EOL decisions, in addition to directing their medical treatment, defining their care plans, the information their family and friends receive, and how they wish to be remembered 5–57,59–61 . Parents of critically ill children who planned the location of death achieved a home death 72% of the time compared to only 8% of those who did not plan 46 .…”

Section: Location Of End‐of‐life Carementioning

confidence: 99%

Palliative care considerations and practices for adolescents and young adults with cancer

Upshaw

Roche

Gleditsch

et al. 2020

Pediatric Blood & Cancer

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The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24 years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that become even more important to recognize, acknowledge, and address in AYAs with lifethreatening cancer receiving palliative care. This review highlights important factors such as psychosocial development, cultural considerations, and support structure, which should be considered when providing palliative care to AYAs with cancer during the various stages of care: introduction of palliative care; symptom management; advanced care planning (ACP); end-of-life (EOL) care; and bereavement. K E Y W O R D S adolescent and young adult, end-of-life care, palliative care, pediatric oncology, support care 1 INTRODUCTION While much medical advancements have occurred in pediatric oncology, challenges in functioning, quality of life, and living with a poor prognosis contribute to symptom burden and suffering within this population. 1 Interdisciplinary palliative care (PC) teams aim to provide specialized care to patients with serious illness, and help their families to improve symptom control, ease suffering, and attend to associated psychological challenges. 2-7 When caring for adolescents and young adults (AYAs) with cancer diagnoses, there are unique considerations given their stage of psychosocial development. In this study, AYA is defined as ages 12-24 years, 8 per the World Health Organization (WHO) definition. While the upper age range of AYAs can be defined as up to 39 years, 9 the intended audience of this study paper is pediatric

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“…Palliative care can play an important role for children and young people with lifelimiting conditions (LLC), enhancing quality of life for children and their families. [1][2][3] In England it is estimated that more than 86,000 children and young people have a life-limiting or life-threatening condition (2017/18). 4 These include diseases without a cure which result in early death (e.g.…”

Section: Introductionmentioning

confidence: 99%

Consulting with young people: informing guidelines for children’s palliative care

Taylor

Murphy

Chambers³

et al. 2020

Arch Dis Child

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ObjectiveIncreasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people).MethodsThe consultation involved qualitative thematic analysis of data from 14 young people (aged 12–18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19–24 years). Findings were shared with participants, and feedback helped to interpret the findings.ResultsFour overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this.ConclusionYoung people’s priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.

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Impact of Specialized Pediatric Palliative Care: A Systematic Review

Cited by 56 publications

References 69 publications

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

Palliative care considerations and practices for adolescents and young adults with cancer

Consulting with young people: informing guidelines for children’s palliative care

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