Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America.


Journal

JAMA network open
ISSN: 2574-3805
Titre abrégé: JAMA Netw Open
Pays: United States
ID NLM: 101729235

Informations de publication

Date de publication:
03 01 2023
Historique:
entrez: 19 1 2023
pubmed: 20 1 2023
medline: 24 1 2023
Statut: epublish

Résumé

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. 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. 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. 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. A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged <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 < .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. 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.

Identifiants

pubmed: 36656580
pii: 2800610
doi: 10.1001/jamanetworkopen.2022.51496
pmc: PMC9857245
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

e2251496

Investigateurs

Florencia Moreno (F)
Beatriz Salas (B)
Rosa Moreno (R)
Cinthia Cespedes (C)
Gissela Sanchez (G)
Soad Fuentes (S)
Silvia Rivas (S)
Pascale Gaussant (P)
Clarissa Aguilar (C)
Enrique Lopez (E)
Roberta Ortiz (R)
Diana Cedeño (D)
Angelica Samudio (A)
Jazmin Servin (J)
Cecilia Ugaz Olivares (C)
Fabiana Morosini (F)
Alejandra Chacon (A)
Lilliana Barragan (L)
Ruth María Castro (RM)
Juliana Lopera (J)
Miguel Bayona (M)
Diana Lorena Valencia Libreros (DL)
Natalia Perdomo (N)
Jeyni Vega (J)
Wendy Rivera (W)
Rosa Vanessa Cabrera (RV)
Emmanuel Guerrero (E)
Soledad Jimenez (S)
Libeth Bosh (L)
Doris Calle (D)
Sergio Quintanilla (S)
Sandra Felix (S)
Susana Anaya (S)
Judith Conejo Barrera (J)
Lilliana Gallegos (L)
Martha Valdez (M)
Valentine Jimenez (V)
Susana Juarez (S)
Berenice Aguilar (B)
Adolfo Pineda (A)
Isodoro Romero (I)
Norma Arecil Lopez Facundo (NA)
Gelis Ruis Piña (G)
Edgar Francisco Ortiz (EF)
Norma Llamas (N)
Rosario Batista (R)

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Auteurs

Michael J McNeil (MJ)

Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Division of Quality of Life and Palliative Care, Department of Oncology, St Jude Children's Research Hospital, Memphis, Tennessee.

Bella Ehrlich (B)

Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Brown University School of Medicine, Providence, Rhode Island.

Huiqi Wang (H)

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

Marisol Bustamante (M)

Universidad de San Carlos de Guatemala, Guatemala City, Guatemala.

Veronica Dussel (V)

Center for Research and Implementation in Palliative Care, Buenos Aires, Argentina.

Paola Friedrich (P)

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

Ximena Garcia Quintero (X)

Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Fundación Valle de Lilli, Cali Colombia.

Srinithya R Gillipelli (SR)

Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
School of Medicine, Baylor College of Medicine, Houston, Texas.

Wendy Gómez García (W)

Dr Robert Reid Cabral Children's Hospital, Santo Domingo, Dominican Republic.

Dylan Graetz (D)

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

Erica C Kaye (EC)

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

Monika Metzger (M)

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

Carla Vittoria Sabato Danon (CV)

Centro de Diagnóstico y Terapia Psicológica, Mexico City, Mexico.

Meenakshi Devidas (M)

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

Justin N Baker (JN)

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

Asya Agulnik (A)

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

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