Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America
Humans; Child; Female; Palliative Care; Quality of Life; Physicians; Only Child; Latin America; Neoplasms/therapy
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 <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. 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.
McNeil MJ; Ehrlich B; Wang H; Bustamante M; Dussel V; Friedrich P; Garcia Quintero X; Gillipelli SR; Gómez García W; Graetz D; Kaye EC; Metzger M; Sabato Danon CV; Devidas M; Baker JN; Agulnik A
JAMA Network Open
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamanetworkopen.2022.51496" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.51496</a>
Assessment of Physician Perceptions of Pediatric Palliative Care for Children with Cancer in Latin America.
Low resource setting; oncology
10053Background: While great strides have transpired in pediatric cancer management in high-income countries (HICs), more than 80% of all children with cancer live in low-and middle-income countries (LMICs),where fewer than 20% will be cured. The World Health Organization (WHO) has stated that early integration of palliative care is an ethical responsibility in the management of children with life-limiting illness. While structural barriers impact the ability to deliver pediatric palliative care (PPC), underlying stigma also prevents early integration of PPC. Methods: The Assessing Doctor’s Attitudes on Palliative Treatment (ADAPT) survey was created for physicians of all specialties who care for children with cancer, initially used in Eurasia. Survey questions evaluated provider perceptions on timing of palliative care integration, scope of palliative treatment, physician responsibility, and ethical issues. This survey was adapted for use in Latin America, including translation to Spanish and reviewed by regional palliative care specialists for syntax, comprehension, and cultural relevance. The survey was then distributed to physicians treating children with cancer in the region. To assess provider’s perspectives on palliative care, we used fifteen statements from the WHO 2018 guidelines, describing general palliative care principles. Results are reported as percent of alignment with guidelines. Results: A total of 1,039 participants from 16 countries in Latin America completed the survey, with a median country response rate of 66% (range 26%-100%). Thirty-six specialties were represented with 34% general pediatricians and 23% pediatric hematologist/oncologists. The majority (59%) had received no PPC training and 37% had no access to PPC experts for consultation in their practice setting. On average, provider’s perspectives on PPC were aligned with the WHO guidelines (81% alignment, range 53%-96%). However, almost half (42%) felt that the integration of pediatric palliative occurred too late in the course of treatment. Additionally, less than half (47%) of respondents felt comfortable addressing the physical symptoms of their patients, 33% felt comfortable addressing emotional symptoms, and only 26% felt comfortable addressing grief and bereavement for the patient’s family. The most common barriers identified were a lack of home-based services (87%), a lack of physician knowledge on the role of PPC (84%), and physician discomfort in discussing palliative care with families (81%). Nearly all (95%) wanted more training in PPC. Conclusions: Most physicians who completed the survey were not confident in providing symptomatic and supportive care for their patients and families. This study will guide targeted interventions for education in PPC for physicians in Latin America as well as interventions to address barriers which impede earlier palliative care integration in the region.
McNeil M; Ehrlich B; Bustamante M; Dussel V; Friedrich P; Garcia QX; Gomez GWC; Graetz DE; Kaye E; Metzger M; Sabato DCV; Baker JN; Agulnik A
Journal of Clinical Oncology
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1200/JCO.2021.39.15_suppl.10053" target="_blank" rel="noreferrer noopener">10.1200/JCO.2021.39.15_suppl.10053</a>
Ethics consultation in pediatrics: long-term experience from a pediatric oncology center
Johnson LM; Church CL; Metzger M; Baker JN
The American Journal Of Bioethics : Ajob
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/15265161.2015.1021965" target="_blank" rel="noreferrer">10.1080/15265161.2015.1021965</a>
Frequency and perceived competence in providing palliative care to terminally ill patients: a survey of primary care physicians
Humans; Physician-Patient Relations; Data Collection; Physician's Practice Patterns/statistics & numerical data; United States/epidemiology; Palliative Care/statistics & numerical data; Terminally Ill/statistics & numerical data; Quality Assurance; Professional Competence/statistics & numerical data; Health Care/methods; Primary Health Care/statistics & numerical data; Terminal Care/statistics & numerical data
We surveyed primary care physicians about their involvement and perceived skills in palliative care. A survey instrument asked how frequently internal medicine and family practice physicians performed 10 palliative care items. Subjects rated their skills in each area. A majority of physicians always or frequently performed all 10 palliative care items, but fewer than 50% of respondents adequately attended to the spiritual needs and economic problems of patients. Interest in palliative care was associated with an increased frequency in performing palliative care items (P = 0.036), while training in palliative care was associated with better perceived performance (P = 0.05). Only 36% of respondents had received training in palliative care. Internists and family practitioners provide palliative care to patients, but feel their skills are lacking in certain areas. Training may improve care to patients at the end of life.
2004
Farber NJ; Urban SY; Collier VU; Metzger M; Weiner J; Boyer EG
Journal Of Pain And Symptom Management
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2004.01.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2004.01.013</a>