Aligning guidelines and medical practice: Literature review on pediatric palliative care guidelines

Clercq, Eva De; Rost, Michael; Pacurari, Nadia; Elger, Bernice Simone; Wangmo, Tenzin

doi:10.1017/s1478951516000882

Cited by 31 publications

(37 citation statements)

References 79 publications

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“…51,52 Multiple studies have cited conceptual confusion between PC and hospice or EOL care, as well as the stigma of hopelessness associated with PC, as significant obstacles to early PC discussions. 6,[53][54][55][56] The International Classification of Disease coding system considers hospice and end-of-life care as synonymous with palliative care, and US clinicians are instructed to bill these services identically. 57 There are even definitional inconsistencies between and among PC guidelines of what palliative care constitutes.…”

Section: Discussionmentioning

confidence: 99%

“…The World Health Organization (WHO) released a seminal report, titled Cancer Pain Relief and Palliative Care in Children , in which it recommended that palliative care (PC) for children with cancer ought to begin at diagnosis, irrespective of prognosis . Other international health organizations—the American Academy of Pediatrics (AAP), Institute of Medicine (IOM), European Association for Palliative Care (EAPC), and the Royal College of Paediatrics and Child Health (RCPCH)—have all since adopted a similar recommendation . These calls for earlier PC are grounded in evidence of an unmet need: the high illness burden and degree of suffering are well established among children with cancer .…”

Section: Introductionmentioning

confidence: 99%

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Palliative care initiation in pediatric oncology patients: A systematic review

et al. 2018

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Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes studies that reported PC timing in the pediatric oncology population. The following databases were searched: PubMed, Web of Science, CINAHL, and PsycInfo databases. Studies that reported time of PC initiation were independently screened and reviewed by 2 researchers. Studies describing pilot initiatives, published prior to 1998, not written in English, or providing no empirical time information on PC were excluded. Extracted data included sample characteristics and timing of PC discussion and initiation. Of 1120 identified citations, 16 articles met the inclusion criteria and comprised the study cohort. Overall, 54.5% of pediatric oncology patients received any palliative service prior to death. Data revealed PC discussion does not occur until late in the illness trajectory, and PC does not begin until close to time of death. Despite efforts to spur earlier initiation, many pediatric oncology patients do not receive any palliative care service, and those who do, predominantly receive it near the time of death. Delays occur both at first PC discussion and at PC initiation. Efforts for early PC integration must recognize the complex determinants of PC utilization across the illness timeline.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Palliative care initiation in pediatric oncology patients: A systematic review

et al. 2018

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“…PC is associated with improved quality of life, and previous studies have found children with cancer and their families want PC to be integrated early in the illness timeline . With mounting evidence, PC is increasingly recommended for pediatric oncology patients …”

Section: Introductionmentioning

confidence: 99%

“…3 With mounting evidence, PC is increasingly recommended for pediatric oncology patients. [4][5][6] Most PC services for children with cancer are rendered in the inpatient setting. 7 The American Academy of Pediatrics recommends consideration of PC from diagnosis in children with cancer.…”

Section: Introductionmentioning

confidence: 99%

Palliative care utilization in hospitalized children with cancer

Cheng

Wangmo

2019

Pediatric Blood & Cancer

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Background There is growing evidence that palliative care (PC) is associated with increased quality of life in children with cancer. Despite increasing recommendations in support of PC to improve pediatric oncology care, little is known about its patterns of use. Methods We analyzed the 2005‐2011 National Inpatient Sample, a representative, cross‐sectional sample of US hospital admissions. Our study cohort comprised 10 960 hospitalizations of children with cancer and high in‐hospital mortality risk. Survey‐weighted regression models were constructed to determine associations of person‐ and hospital‐level characteristics with PC involvement and healthcare costs. Results Overall, 4.4% of hospitalizations included PC involvement. In regression models invoking stepwise variable selection, a shorter length of stay (PC vs no PC; mean: 23.9 vs 32.6 days), solid cancer (solid vs hematologic vs brain cancer; PC use: 7.4% vs 2.8% vs 5.5%), and older age (PC vs no PC; mean: 10.2 vs 8.9 years) were associated with PC use. PC utilization was also associated with lower overall and daily hospital costs. Conclusions One in 20 pediatric inpatients with cancer and high mortality risk receives PC, with differential utilization by socio‐economic groups. These results have significant implications for public health resource allocation and the delivery of pediatric PC as high‐value care. Future research should focus on the development of new tools to help physicians assess when PC is appropriate for their patients.

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“…Several barriers to adequate implementation and sufficient provision of PPC have been identified in the literature, such as, organizational, cultural and economic obstacles 1 . Various scholars have also focused on the problem of conceptual confusion and in particular, on the lack of a shared understanding of PC [2][3][4][5][6] . They argue that good PC provision necessitates such a common understanding.…”

Section: Introductionmentioning

confidence: 99%

The Need for a Shared Understanding

Rost

Clercq

Wangmo

et al. 2017

J Hosp Palliat Nurs

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Conceptual confusion has been identified as one primary barrier to providing quality palliative care. This study aims to analyze pediatric palliative care guidelines from a conceptual perspective in order to facilitate a shared understanding of palliative care in pediatrics. Five online data bases were searched systematically, in addition to a Google search. Analysis focused on the language used to determine the domains of pediatric palliative care and on the composition of the pediatric palliative care team. Guidelines express consensus on four core domains of pediatric palliative care: physical, psychological, social and spiritual care. However, further linguistic analysis revealed that conceptual vagueness exists with respect to the latter three as terminology is used inconsistently both within and across guidelines. It remains unclear what demarcates psychological care from emotional care, social care from psychosocial care, and spiritual care from religious or existential care. Furthermore, guidelines agree on the most prominent members of the pediatric palliative care team. Core domains of pediatric palliative care match these most prominent members of pediatric palliative care team. However, an inconsistent use of terminology affects the quality of pediatric palliative care in various ways. Therefore, a shared understanding and unambiguous language must be envisaged.

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Aligning guidelines and medical practice: Literature review on pediatric palliative care guidelines

Abstract: Our results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.

Cited by 31 publications

References 79 publications

Palliative care initiation in pediatric oncology patients: A systematic review

Palliative care initiation in pediatric oncology patients: A systematic review

Palliative care utilization in hospitalized children with cancer

The Need for a Shared Understanding

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