Capturing the young child's reports of cancer treatment tolerability: Does our practice reflect an assumption that they cannot report?

2022

e30028

10/2022

1545-5017

10.1002/pbc.30028

Pediatr Blood Cancer

36250991

Status of Palliative Oncology Care for Children and Young People in Sub-Saharan Africa: A Perspective Paper on Priorities for New Frontiers.

2021

1395-1405

2021 Aug

2687-8941

<p><strong>PURPOSE: </strong>The burden of cancer disproportionately affects low- and middle-income countries. Low 5-year survival figures for children with cancer in low-income countries are due to late presentation at diagnosis, treatment abandonment, absence of sophisticated multidisciplinary care, and lack of adequate resources. The reasons for late presentation are partly due to limited awareness of cancer symptoms, high treatment costs, and facility-level barriers to timely access to treatment. Given the systemic challenges, the regional need for palliative oncology care for children care is high. Despite the enormity of the need for palliative oncology for children with cancer in Africa, its level of development remains poor. This paper presents the evidence on the status of palliative oncology care for children in sub-Saharan Africa.</p>

<p><strong>METHODS: </strong>This review provides an overview of the current status of palliative oncology care for children in sub-Saharan Africa, using the WHO building blocks for health systems strengthening as reference points, before proposing a forward-looking prioritized agenda for its development.</p>

<p><strong>RESULTS: </strong>We noted that survival rates for children with cancer remain much poorer in Africa compared with developed countries and palliative oncology care resources are scant. Our results also show low coverage for palliative oncology care services for children, lack of a critical mass of health workers with the skills to deliver the care, a lack of robust documentation of the burden of cancer, widespread lack of access to essential controlled medicines, limited funding from government and limited coverage for palliative oncology care in most cancer control plans.</p>

<p><strong>CONCLUSION: </strong>This review highlights priority areas for action that align to the WHO health system building blocks for strengthening health systems.</p>

10.1200/GO.21.00102

JCO Glob Oncol

34546790

Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey.

2021

2021 Jan 21

1873-6513

<p><strong>BACKGROUND: </strong>The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified eleven potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance."</p>

<p><strong>METHODS: </strong>Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item.</p>

<p><strong>RESULTS: </strong>177 individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top 5 potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6).</p>

<p><strong>CONCLUSIONS: </strong>Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.</p>

10.1016/j.jpainsymman.2021.01.007

J Pain Symptom Manage

33485936

Research Priorities in Pediatric Palliative Care.

2015

467-70.e3

08/2015

1097-6833

<p><strong>OBJECTIVE: </strong>To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda.</p>

<p><strong>STUDY DESIGN: </strong>A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus.</p>

<p><strong>RESULTS: </strong>A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education.</p>

<p><strong>CONCLUSIONS: </strong>This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.</p>

10.1016/j.jpeds.2015.05.002

J. Pediatr.

26028284