Improvement in treatment abandonment in pediatric patients with cancer in Guatemala.

BACKGROUND: Treatment refusal and abandonment are major causes of treatment failure for children with cancer in low- and middle-income countries (LMICs), like Guatemala. This study identified risk factors for and described the intervention that decreased abandonment. METHODS: This was a retrospective study of Guatemalan children (0-18 years) with cancer treated at the Unidad Nacional de Oncología Pediátrica (UNOP), 2001-2008, using the Pediatric Oncology Network Database. Treatment refusal was a failure to begin treatment and treatment abandonment was a lapse of 4 weeks or longer in treatment. The impact of medicina integral, a multidisciplinary psychosocial intervention team at UNOP was evaluated. Cox proportional hazards analysis identified the effect of demographic and clinical factors on abandonment. Kaplan-Meier analysis estimated the survival. RESULTS: Of 1,789 patients, 21% refused or abandoned treatment. Abandonment decreased from 27% in 2001 to 7% in 2008 following the implementation of medicina integral. Factors associated with increased risk of refusal and abandonment: greater distance to the centre (P < 0.001), younger age (P = 0.017) and earlier year of diagnosis (P < 0.001). Indigenous race/ethnicity (P = 0.002) was associated with increased risk of abandonment alone. Abandonment correlated with decreased overall survival: 0.57 ± 0.02 (survival ± standard error) for those who completed therapy versus 0.06 ± 0.02 for those who abandoned treatment (P < 0.001) at 8.3 years. CONCLUSION: This study identified distance, age, year of diagnosis and indigenous race/ethnicity as risk factors for abandonment. A multidisciplinary intervention reduced abandonment and can be replicated in other LMICs.

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

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.

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

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.

Pediatric Oncology Palliative Care Programs in Central America: Pathways to Success.

Palliative care offers children who have life-limiting and life-threatening oncologic illnesses and their families improved quality of life. In some instances, impeccable symptom control can lead to improved survival. Cultural and financial barriers to palliative care in oncology patients occur in all countries, and those located in Central America are no exception. In this article, we summarize how the programs participating in the Asociación de Hemato-Oncólogos Pediatras de Centro America (AHOPCA) have developed dedicated oncology palliative care programs. The experience in Guatemala, El Salvador, Costa Rica, Panama, Dominican Republic and Haiti is detailed, with a focus on history, the barriers that have impeded progress, and achievements. Future directions, which, of course, may be impacted by the COVID-19 pandemic, are described as well.