Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis

10053 Background: While great strides have transpired in pediatric cancer management in high-income countries (HICs), more than 80% of all children with cancer live in low-and middle-income countries (LMICs),where fewer than 20% will be cured. The World Health Organization (WHO) has stated that early integration of palliative care is an ethical responsibility in the management of children with life-limiting illness. While structural barriers impact the ability to deliver pediatric palliative care (PPC), underlying stigma also prevents early integration of PPC. Methods: The Assessing Doctor’s Attitudes on Palliative Treatment (ADAPT) survey was created for physicians of all specialties who care for children with cancer, initially used in Eurasia. Survey questions evaluated provider perceptions on timing of palliative care integration, scope of palliative treatment, physician responsibility, and ethical issues. This survey was adapted for use in Latin America, including translation to Spanish and reviewed by regional palliative care specialists for syntax, comprehension, and cultural relevance. The survey was then distributed to physicians treating children with cancer in the region. To assess provider’s perspectives on palliative care, we used fifteen statements from the WHO 2018 guidelines, describing general palliative care principles. Results are reported as percent of alignment with guidelines. Results: A total of 1,039 participants from 16 countries in Latin America completed the survey, with a median country response rate of 66% (range 26%-100%). Thirty-six specialties were represented with 34% general pediatricians and 23% pediatric hematologist/oncologists. The majority (59%) had received no PPC training and 37% had no access to PPC experts for consultation in their practice setting. On average, provider’s perspectives on PPC were aligned with the WHO guidelines (81% alignment, range 53%-96%). However, almost half (42%) felt that the integration of pediatric palliative occurred too late in the course of treatment. Additionally, less than half (47%) of respondents felt comfortable addressing the physical symptoms of their patients, 33% felt comfortable addressing emotional symptoms, and only 26% felt comfortable addressing grief and bereavement for the patient’s family. The most common barriers identified were a lack of home-based services (87%), a lack of physician knowledge on the role of PPC (84%), and physician discomfort in discussing palliative care with families (81%). Nearly all (95%) wanted more training in PPC. Conclusions: Most physicians who completed the survey were not confident in providing symptomatic and supportive care for their patients and families. This study will guide targeted interventions for education in PPC for physicians in Latin America as well as interventions to address barriers which impede earlier palliative care integration in the region.

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Putting pediatric palliative care in prime time.

Journal of Clinical Oncology ◽

10.1200/jco.2014.32.31_suppl.68 ◽

2014 ◽

Vol 32 (31_suppl) ◽

pp. 68-68

Author(s):

Rebecca A Kirch ◽

Christina K Ullrich

Keyword(s):

Palliative Care ◽

Childhood Cancer ◽

Consumer Research ◽

Quality Care ◽

Essential Element ◽

Lessons Learned ◽

Pediatric Palliative Care ◽

Cancer Society ◽

Early Integration ◽

Care Experience

68 Background: For patients and families at any age and stage, treating the symptoms and stress of cancer is as important as treating the disease. Palliative care has hit its stride as one of the nation’s fastest growing health care trends, with a robust evidence base, new quality standards, increasing awareness and understanding, and a related public policy agenda. This momentum positions pediatric palliative care as an essential aspect of advancing childhood cancer survivorship with high quality of life – particularly important for children given the documented symptoms, late effects and disabling conditions they experience into adulthood and across their lifetime. This oral presentation will describe pediatric palliative care’s prominent role in addressing the challenges of childhood cancer and survivorship across the continuum, providing practical clinical case study context and highlights of consumer research findings and an advocacy agenda helping address palliative care’s “identity problem” that affects access to quality care. Methods: This presentation provides practical information for integrating palliative care to benefit children and families, including lessons learned through implementation of early pediatric palliative care alongside disease-directed treatment under the Concurrent Care for Children Requirement and other initiatives. It will also identify available resources for communicating about palliative care based on consumer research from the American Cancer Society and Center to Advance Palliative Care. Results: This presentation will inform and inspire person-centered and family-focused activities to advance early integration of palliative care in research and clinical practice. It will also highlight opportunities for active involvement in the QOL national movement to improve quality cancer care. Conclusions: Audience will understand benefits of pediatric palliative care and strategies supporting its delivery through the pediatric concurrent care experience in oncology. They will also gain improved proficiency in communicating about palliative care, and will be well-positioned to engage in the QOL legislative campaign to bring palliative care everywhere as an essential element of quality care.

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Child’s symptom burden and depressive symptoms among caregivers of children with cancers: an argument for early integration of pediatric palliative care

Annals of Palliative Medicine ◽

10.21037/apm.2016.04.03 ◽

2016 ◽

Vol 5 (3) ◽

pp. 157-165 ◽

Cited By ~ 25

Author(s):

Andrew Toyin Olagunju ◽

Foluke Oladele Sarimiye ◽

Tinuke Oluwasefunmi Olagunju ◽

Muhammad Yaqub Murtazha Habeebu ◽

Olatunji Francis Aina

Keyword(s):

Palliative Care ◽

Depressive Symptoms ◽

Symptom Burden ◽

Pediatric Palliative Care ◽

Early Integration

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First Do No Harm: Identifying Barriers and Facilitators To Early Integration of a Pediatric Palliative Care Team as Perceived by Pediatric Oncology Providers (738)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2011.12.216 ◽

2012 ◽

Vol 43 (2) ◽

pp. 442-443

Author(s):

Todd Dalberg ◽

Patricia Carney ◽

Gregory Thomas ◽

Erik Fromme ◽

Elizabeth Jacob-Files ◽

...

Keyword(s):

Palliative Care ◽

Pediatric Oncology ◽

Palliative Care Team ◽

Care Team ◽

Barriers And Facilitators ◽

Pediatric Palliative Care ◽

Early Integration ◽

Do No Harm ◽

Oncology Providers

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Perceptions of barriers and facilitators to early integration of pediatric palliative care: A national survey of pediatric oncology providers

Pediatric Blood & Cancer ◽

10.1002/pbc.26996 ◽

2018 ◽

Vol 65 (6) ◽

pp. e26996 ◽

Cited By ~ 17

Author(s):

Todd Dalberg ◽

Neil L. McNinch ◽

Sarah Friebert

Keyword(s):

Palliative Care ◽

Pediatric Oncology ◽

National Survey ◽

Barriers And Facilitators ◽

Pediatric Palliative Care ◽

Early Integration ◽

Oncology Providers

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Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study

Journal of Pediatric Oncology Nursing ◽

10.1177/1043454219871082 ◽

2019 ◽

Vol 37 (1) ◽

pp. 35-45 ◽

Cited By ~ 2

Author(s):

Michael Rost ◽

Eva De Clercq ◽

Milenko Rakic ◽

Tenzin Wangmo ◽

Bernice Elger

Keyword(s):

Palliative Care ◽

Pediatric Oncology ◽

Financial Resources ◽

Pediatric Palliative Care ◽

Outpatient Services ◽

Focus Group Study ◽

Early Integration ◽

Team Meetings ◽

Cultural Aspects ◽

Oncology Providers

Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is mainly composed of nurses. However, only a small fraction of children receive pediatric palliative care and only a minority of them in a timely manner. The main aim was to identify barriers to the provision of pediatric palliative care in Swiss pediatric oncology. Method: This qualitative study consisted of five focus groups. In total, 29 pediatric oncology providers participated (13 nurses, 11 physicians, 4 psycho-oncologists, 1 social worker). Data were analyzed employing applied thematic analysis. Results: Analysis revealed eleven barriers: lack of financial resources, lack of prejob education regarding pediatric palliative care, lack of awareness in politics and policy making, absence of a well-established nationwide bridging care system, insufficient psychosocial and professional supervision for staff, understaffing, inadequate infrastructure of hospitals, asymmetry of factual and emotional knowledge between parents and providers, cultural aspects, irrational parental hopes, and “the unspoken.” Discussion: Awareness should be raised for pediatric palliative care (in particular in demarcation from palliative care in adults) among politics and policy makers which could lead to increased financial resources that, in turn, could be used to improve bridging care, hospital’s infrastructure, and team support. More flexibility for care determining factors is needed, for example, with respect to convening team meetings, short-termed staffing, and reimbursement at the interface between inpatient and outpatient services.

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