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

Michael J Mcneil,Diana Cedeño,Judith Conejo Barrera,Alejandra Chacon,Gissela Sanchez,Silvia Rivas,Jeyni Vega,Norma Arecil Lopez Facundo,Lilliana Barragan,Jazmin Servin,Rosa Vanessa Cabrera,Miguel Bayona,Berenice Aguilar,Diana Lorena Valencia Libreros,Soad Fuentes,Beatriz Salas,Roberta Ortiz,Natalia Perdomo,Cinthia Cespedes,Soledad Jimenez,Libeth Bosh,Cecilia Ugaz Olivares,Emmanuel Guerrero,Susana Anaya,Edgar Francisco Ortiz,Martha Valdez,Dylan E Graetz,Isodoro Romero,Fabiana Morosini,Norma Llamas,Pascale Gaussant,Rosario Batista,Gelis Ruis Piña,Doris Calle,Ruth María Castro,Juliana Lopera,Lilliana Gallegos,Adolfo Pineda,Susana Juarez,Florencia Moreno,Sandra Felix,Sergio Quintanilla,Enrique Lopez,Clarissa Aguilar,Valentine Jimenez,Paola Friedrich,Huiqi Wang,Srinithya R Gillipelli,Bella Ehrlich ,Carla Vittoria Sabato Danon,Asya Agulnik,Meenakshi Devidas,Justin N Baker,Monika L Metzger,Erica C Kaye,Verónica Dussel ,Wendy Yamilet Matute Rivera ,Yuvanesh Vedaraju,Marisol Bustamante,Ximena Quintero ,Angélica Samudio ,Wendy Gómez García ,Rosa L Moreno

doi:10.1001/jamanetworkopen.2022.1245

Abstract

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. To investigate perceptions among physicians in Latin America about the integration of palliative care for children with cancer. 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. 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. 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. 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.

Highlights

Physician perspectives on pediatric palliative care (PPC) were generally aligned with World Health Organization (WHO) guidance
The perceptions of PPC among physicians who care for children with cancer in Latin America are still unknown
Structural and financial barriers exist, a lack of knowledge of palliative care among clinicians may impede early integration of PPC for children with cancer.[7]. The findings of this survey study demonstrated that physicians in Latin America had accurate knowledge of PPC that was aligned with WHO guidance in general, there was a need for PPC education, as evidenced by the percentage of physicians who reported low confidence in treating the physical, emotional, spiritual, and bereavement needs of patients and their families

Summary

Introduction

During the past 50 years, 5-year survival among children with cancer has greatly improved and exceeds 80% in most high-income countries.[1]. More than 80% of children with cancer live in low- and middle-income countries, and most die of their disease.[2-4]. The World Health Organization (WHO) has stated that early integration of palliative care is an “ethical responsibility” in the treatment of children with life-threatening illness, including cancer, and should be a part of care regardless of available resources.5,6(p2). The WHO defines palliative care as the prevention and relief of physical, psychosocial, and spiritual suffering among patients and their families facing life-threatening illness.[6]. Studies have demonstrated that early integration of palliative care in pediatrics helps with pain and symptom management, caregiver and patient suffering, and family communication.[7-10]. In low- and middleincome countries, access to pediatric palliative care (PPC) is limited; more than 65% of countries worldwide do not have PPC services.[11]. Countries with the highest rates of child mortality and health-related suffering are those with the least access to PPC services.[12-14]

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Conclusion