Physician Perceptions of and Barriers to Pediatric Palliative Care for Children With Cancer in Brazil

Author:

McNeil Michael J.12,Godfrey Alyssa3ORCID,Loggetto Patricia1ORCID,de Oliveira Junior André4,Job Godwin1,Boldrini Erica4ORCID,Regina Costa Murra Glaucia4ORCID,Antunes Geronutti Ayub Dileiny4,Francisco Oliveira de Lima Allan5,Esmeraldo Andrade de Almeida Aline6ORCID,Lopes Garcia Julia78,Beatriz Costa Neves do Amaral Anna9ORCID,Cristina Cunha Ferreira e Fonseca Iêda9,Friedrich Paola1ORCID,Metzger Monika L.10ORCID,Devidas Meenakshi1ORCID,Agulnik Asya1ORCID,Baker Justin N.2,

Affiliation:

1. Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, TN

2. Division of Quality of Life and Palliative Care, Department of Oncology, St Jude Children's Research Hospital, Memphis, TN

3. Drexel University School of Medicine, Philadelphia, PA

4. Hospital de Câncer Infantojuvenil de Barretos, Barretos, Brazil

5. Instituto de Medicina Integral Professor Fernando Figueira, Recife, Brazil

6. Hospital da Criança de Brasília José Alencar, Brasília, Brazil

7. Instituto de Tratamento do Câncer Infantil, Instituto da Criança, Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo, São Paulo, Brazil

8. Hospital Israelita Albert Einstein, São Paulo, Brazil

9. Hospital de Clínicas da Universidade Federal de Uberlândia, Uberlândia, Brazil

10. Médecins sans Frontières, Geneva, Switzerland

Abstract

PURPOSE Early integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early integration is necessary to develop PPC in Brazil. METHODS The Assessing Doctors' Attitudes on Palliative Treatment survey was modified for use in Brazil. The survey was open from January 2022 to June 2022 and distributed to physicians of all specialties from participating institutions who treat children with cancer. Statistical analysis was complemented by qualitative analysis of open-ended responses. RESULTS A total of 272 respondents participated. Most respondents reported access to PPC experts for consultation (77.2%) and 34.5% indicated previous palliative care training. Physician knowledge of PPC was generally aligned with WHO guidance (median alignment, 93.0%; range, 80.5%-98.2%). However, about half (53.3%) felt comfortable addressing physical needs of patients receiving PPC, 35.3% addressing emotional needs, 25.8% addressing spiritual needs, and 33.5% addressing grief and bereavement needs. Most respondents (65.4%) felt palliative care should be involved from diagnosis, but only 10.3% stated that this occurred in their setting. The most important barriers identified were physician discomfort (89.0%), limited physician knowledge (88.6%), and lack of home-based services (83.8%). CONCLUSION Despite a strong understanding of the role of palliative care, physicians in Brazil reported low confidence delivering PPC to children with cancer. Additionally, physicians generally believed that PPC should be integrated earlier in the disease trajectory of children with cancer. This work will direct educational and capacity building initiatives to ensure greater access to high-quality PPC for children with cancer in Brazil to address patient and family suffering.

Publisher

American Society of Clinical Oncology (ASCO)

Subject

Cancer Research,Oncology

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