Title

Physician Perceptions of Palliative Care for Children With Cancer in Latin America

Authors

Michael J. McNeil, Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Bella S. Ehrlich, Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Huiqi Wang, Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Yuvanesh Vedaraju, Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Marisol Bustamante, Independent consultant, Guatemala City, Guatemala.
Veronica Dussel, Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
Paola Friedrich, Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Ximena Garcia Quintero, Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Srinithya R. Gillipelli, Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Wendy Gomez Garcia, Oncology Unit, Dr Robert Reid Cabral Children's Hospital, Santo Domingo, Dominican Republic.
Dylan E. Graetz, Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Erica C. Kaye, Division of Quality of Life and Palliative Care Department of Oncology, St Jude Children's Research Hospital, Memphis, Tennessee.
Monika L. Metzger, Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Carla Vittoria Sabato Danon, Centro de Diagnóstico y Terapia Psicológica, Mexico City, Mexico.
Meenakshi Devidas, Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Justin N. Baker, Division of Quality of Life and Palliative Care Department of Oncology, St Jude Children's Research Hospital, Memphis, Tennessee.
Asya Agulnik, Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.

Abstract

Importance: The World Health Organization (WHO) designates early integration of palliative care as an ethical responsibility in the treatment of children with serious illness. Although structural barriers may influence provision of pediatric palliative care (PPC) for children with cancer in resource-limited settings, underlying physician perceptions may also impede early integration of PPC in cancer care. Objective: To investigate perceptions among physicians in Latin America about the integration of palliative care for children with cancer. Design, Setting, and Participants: This survey study used the Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey, which was developed for physicians who care for children with cancer and was initially distributed in Eurasia. The survey was modified for use in Latin America, including translation into Spanish and adaptation for cultural context. The survey was distributed between August 21, 2020, and January 31, 2021, to physicians treating children with cancer in 17 Latin American countries. Each country had a specific survey distribution method based on guidance of local experts. Main Outcomes and Measures: The ADAPT survey evaluated physicians' understanding of palliative care principles, comfort in addressing patient and family suffering, and identification of barriers to PPC integration for children with cancer. Univariate and multivariable linear regression analyses were used to assess factors associated with physicians' knowledge about and comfort with PPC practice and whether independent physician variables were associated with survey response alignment with WHO guidance on PPC. Open-ended questions were analyzed qualitatively to supplement the quantitative data. Results: A total of 874 physicians from 17 countries participated, with an overall response rate of 39.9% (874 of 2193) and a median country response rate of 51.4% (range, 23.7%-100%). Most respondents were aged 35 years or older (577 [66.0%]), and 594 (68.0%) identified as female. Most physicians (486 [55.6%]) had no formal PPC training, and 303 (34.7%) had no access to PPC experts for consultation. Physician perspectives on PPC were generally aligned with WHO guidance (mean [SD] alignment, 83.0% [14.1%]; range among respondents, 24.0%-100%). However, only 438 respondents (50.1%) felt comfortable addressing physical symptoms of patients receiving PPC, 295 (33.8%) felt comfortable addressing emotional symptoms, and 216 (24.7%) felt comfortable addressing grief and bereavement needs of the patient's family. A total of 829 participants (94.8%) desired further education and training in PPC. Conclusion and Relevance: Although physicians' perspectives aligned well with WHO guidance for PPC, this survey study identified opportunities for improving physician training in symptom management and emotional support for children with cancer and their families. These findings may inform the development of targeted interventions to improve the quality of PPC for children with cancer in Latin America.

Publication Title

JAMA network open

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