Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America
Authors: McNeil Michael J. , Ehrlich Bella , Wang Huiqi , Bustamante Marisol , Dussel Veronica , Friedrich Paola , Garcia Quintero Ximena , Gillipelli Srinithya R. , Gómez García Wendy , Graetz Dylan , Kaye Erica C. , Metzger Monika , Sabato Danon Carla Vittoria , Devidas Meenakshi , Baker Justin N. , Agulnik Asya ,   Assessing Doctors’ Attitudes on Palliative Treatment (ADAPT) Latin America Study Group, Moreno Florencia , Salas Beatriz , Moreno Rosa , Cespedes Cinthia , Sanchez Gissela , Fuentes Soad , Rivas Silvia , Gaussant Pascale , Aguilar Clarissa , Lopez Enrique , Ortiz Roberta , Cedeño Diana , Samudio Angelica , Servin Jazmin , Ugaz Olivares Cecilia , Morosini Fabiana , Chacon Alejandra , Barragan Lilliana , Castro Ruth María , Lopera Juliana , Bayona Miguel , Valencia Libreros Diana Lorena , Perdomo Natalia , Vega Jeyni , Rivera Wendy , Cabrera Rosa Vanessa , Guerrero Emmanuel , Jimenez Soledad , Bosh Libeth , Calle Doris , Quintanilla Sergio , Felix Sandra , Anaya Susana , Conejo Barrera Judith , Gallegos Lilliana , Valdez Martha , Jimenez Valentine , Juarez Susana , Aguilar Berenice , Pineda Adolfo , Romero Isodoro , Lopez Facundo Norma Arecil , Ruis Piña Gelis , Ortiz Edgar Francisco , Llamas Norma , Batista Rosario 
Published: January 2023

Importance

Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood.

Objectives

To evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America.

Design, Setting, and Participants

The Assessing Doctors’ Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America.

Main Outcomes and Measures

The ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previous palliative care training with physician specialty was performed using the Pearson χ2 test or the Fisher exact test. The McNemar test was used to assess responses regarding the actual vs ideal timing of PPC consultation. Analysis of variance was used to compare mean values for perceived barriers by country income level. Answers to open-ended questions were analyzed qualitatively.

Results

A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged &amp;lt;35 years and 556 physicians [66.9%] aged ≥35 years) from 17 countries participated, with an overall response rate of 37.9% (831 of 2193) and a median country response rate of 51.4% (range, 22.2%-88.9%). Most respondents (572 [68.8%]) said that PPC should be involved from diagnosis, but only 117 (14.1%) stated that this occurred at their institution (P &amp;lt; .001). The most significantly ranked barriers to PPC were lack of home-based services (713 [85.8%]), personnel (654 [78.7%]), and knowledge about PPC (693 [83.4%]), along with physician (676 [81.3%]) and family (603 [72.6%]) discomfort about PPC involvement. In addition, these barriers were rated as more important in lower-middle income countries compared with upper-middle income countries and high-income countries.

Conclusions and Relevance

This study highlights the discrepancy between ideal and actual timing of PPC for children with cancer and barriers to early PPC integration in Latin America. Interventions addressing access to PPC resources, didactic training, and clinical education (with a particular focus on equitable access to basic resources and support) are critical to improve the timing and quality of PPC in the region.