Pediatric Palliative Care: Current Evidence and Evidence Gaps

Miller, Elaine Tilka; Levy, Carly; Linebarger, Jennifer; Klick, Jeffrey; Carter, Brian S.

doi:10.1016/j.jpeds.2015.02.019

Cited by 17 publications

(10 citation statements)

References 63 publications

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“…While to some extent overlapping with adults, CYP have their distinct care needs and characteristics [ 19 – 21 ]. It is essential to understand whether the primarily adult-focused national efforts worked for CYP and how.…”

Section: Introductionmentioning

confidence: 99%

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Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993–2014

et al. 2016

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BackgroundEfforts to improve end of life care (EoLC) have made tangible impacts on care in adults, including enabling more people to die at their preferred place of death (PoD), usually home or hospices. Little is known how the PoD in children and young people (CYP, ≤24 years) has changed over time, especially in the context of a series of national initiatives for EoLC improvement since the late 1990s. To inform evidence-based policy-making and service development, we evaluated the national trends of PoD and the associated factors in CYP who died with cancer.MethodsPopulation-based observational study in the National Health Service (NHS) England, 1993-2014. All non-accidental CYP deaths with cancer (N = 12,774) were extracted from the death registration database of the Office for National Statistics (ONS).ResultsHospital deaths reduced from >50 to 45 %, hospice deaths were rare but more than doubled from 6 % in 1993–2000 to 13 % in 2005–2014, and home deaths fluctuated at around 40 %. Those aged 0–19 years were more likely to die at home than young adults (adjusted proportion ratio (PRs): 1.23–1.62); haematological cancer patients or those with 2+ comorbid conditions had higher chances of hospital death (PRs for home: 0.18–0.75, hospice: 0.04–0.37); deprivation was associated with a reduced chance of home death (PRs: 0.76–0.84). The residential region affected hospice but not home deaths. The variations of PoD by cause of death, comorbid conditions and deprivation slightly decreased with time.ConclusionsHospitals and home were the main EoLC settings for CYP with cancer. Home death rates barely changed in the past two decades; deaths in hospitals remained the most common but slightly shifted towards hospices. CYP with haematological malignancy or with comorbid conditions had persistently high hospital deaths; these cases had an even lower chance of deaths in hospices (50 %) than at home. There were deprivation- and area-related inequalities in PoD which may need service- and/or policy-level intervention. The findings highlight a need for CYP specific initiatives to enhance EoLC support and capacities both at home and in hospices.

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Section: Introductionmentioning

confidence: 99%

“…This study aimed to evaluate how the PoD and the determinants in CYP with cancer changed over time. We chose to focus on cancer as it is a leading non-accidental mortality in CYP [ 24 – 26 ], but not currently optimally served by palliative and EoLC service [ 19 , 21 ].…”

Section: Introductionmentioning

confidence: 99%

Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993–2014

et al. 2016

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“…Recent recommendations have called for continued investigation of physical and psychosocial care (including symptom management and psychosocial supports), communication and decision making, as well as health systems (care coordination and access to services). 98,99 Additional areas of research might include questions about ethics (eg, risk-to-benefit considerations for surgical biopsy before and after experimental therapies), health policy (eg, the rationale for concurrent cancer-directed and hospice care), and research methods (eg, systematic integration of patient-reported outcomes in clinical oncology research), as well as further trials assessing the effect of standardised primary PPC interventions and subspecialised PPC teams in the care of children with advanced cancer. We propose five additional, novel domains for future research (figure 2), which are founded on the experiences of children with cancer and their families and represent previously understudied but important aspects of their wellbeing.…”

Section: The Next Generation Of Ppc Oncology Investigationmentioning

confidence: 99%

Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

Rosenberg

Wolfe

2017

The Lancet Child & Adolescent Health

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Paediatric palliative care (PPC) endeavours to alleviate the suffering and improve the quality of life of children with serious illnesses and their families. In the past two decades since WHO defined PPC and called for its inclusion in paediatric oncology care, rigorous investigation has provided important insights. For example, the first decade of research focused on end-of-life experiences of the child and the family, underscoring the high prevalence of symptom burden, the barriers to parent–provider concordance with regards to prognosis, as well as the need for bereavement supports. The second decade expanded PPC oncology investigation to include the entire cancer continuum and the voices of patients. Other studies identified the need for support of parents, siblings, and racial and ethnic minority groups. Promising interventions designed to improve outcomes were tested in randomised clinical trials. Future research will build on these findings and pose novel questions about how to continue to reduce the burdens of paediatric cancer.

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“…Pediatric Palliative Care (the end-of-life way of care for children with incurable diseases [1]) and care for elderly people in Nursing Homes are two areas of healthcare characterized by complex social and emotional challenges, in addition to medical ones [2], [3]. Although the patients and diseases are very different, the two scenarios present important similarities: 1) Patients are typically affected by a chronic condition.…”

Section: Background and Objectivesmentioning

confidence: 99%

“…2) These care scenarios are characterized by a mediated relation between care professionals and patients where not the patient, but the family caregiver (typically the parent in PPC and the child in NH) is the person that interacts with the care structures and takes decisions. 1 c 2016 IEEE. To be published in The 39th International Conference on Software Engineering (ICSE 2017).…”

Section: Background and Objectivesmentioning

confidence: 99%

Understanding How Software Can Support the Needs of Family Caregivers for Patients with Severe Conditions

Fiore

Ceschel

Fiore

et al. 2017

2017 IEEE/ACM 39th International Conference on Software Engineering: Software Engineering in Society Track (ICSE-SEIS)

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In this paper, we report an extensive analysis that we performed in two scenarios where the care relation between doctor and patients are mediated by the relatives of the patients: Pediatric Palliative Care (PPC) and Nursing Homes (NH). When the patients are children or very old adults in the end of life, the provision of care often involve a family caregiver as the main point of contact for the health service. PPC and NH are characterized by emotional complexity, since incurable diseases expose the family caregivers to heavy careload and human distress. In this paper, we discuss our findings with a novel perspective, focusing on: information, coordination and social challenges that arise by dealing with such contexts; the existing technology as it is appropriated today to cope with them; and what we, as software researchers, can do to develop the right solutions. 1

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Pediatric Palliative Care: Current Evidence and Evidence Gaps

Cited by 17 publications

References 63 publications

Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993–2014

Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993–2014

Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

Understanding How Software Can Support the Needs of Family Caregivers for Patients with Severe Conditions

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