Pediatric Oncology Palliative Care Programs in Central America: Pathways to Success (original) (raw)
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Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America
JAMA Network Open
ImportanceEarly 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.ObjectivesTo 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 ParticipantsThe 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 MeasuresThe 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 previou...
Physician Perceptions of Palliative Care for Children With Cancer in Latin America
JAMA Network Open
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 resourcelimited 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 (continued) Key Points Question What are the perceptions among physicians caring for children with cancer in Latin America on the integration of palliative care? Findings In this survey study of 874 physicians from 17 countries in Latin America, physicians' understanding of palliative care was generally aligned with World Health Organization guidance, but their comfort level in providing palliative care to patients and families was low. Meaning The findings suggest that opportunities exist for improving physician training in symptom management and emotional support for children with cancer and their families.
Assessing Need for Palliative Care Services for Children in Mexico
Journal of Palliative Medicine, 2015
Background: Pediatric palliative care increasingly became integrated into health care institutions worldwide over the last decade. However, in Mexico and other developing countries with large populations of children, little is known regarding the need for palliative care services. We aimed to assess the need for palliative and end-of-life care for children dying in public hospitals affiliated with Secretaria de Salud in Mexico. Measurement: We conducted a retrospective review of deaths of children (1-17 years old) occurring during 2011 and determined deaths associated with underlying complex chronic conditions by reviewing the four causes of death listed in the death certificate. We collected sociodemographic and clinical data and utilized univariate and multivariate analyses to determine factors associated with complex chronic conditions. Results: A total of 2715 pediatric deaths were studied. We found 41% were associated with a complex chronic condition. The most frequent types of conditions were malignancies (47%), neuromuscular (18%), cardiovascular (12%), and renal (10%). Children with renal and malignant conditions died at an older age than children with other types of complex chronic conditions. Multivariate analysis indicated the independent predictors of death with complex chronic condition were no indigenous ethnicity, lack of admission to the intensive care unit during the final hospital stay, and having affiliation with an institution for health care. Conclusions: A large proportion of pediatric deaths are associated with complex chronic conditions indicating the provision of adequate funding for professional education and palliative care initiatives for children in Mexico, should be a topic of the national health care agenda.
Childhood cancer in Latin America: from detection to palliative care and survivorship
Cancer Epidemiology, 2021
Background: Treatment options for childhood cancer have improved substantially, although in many low-and middle-income countries survival is lagging behind. Integral childhood cancer care involves the whole spectrum from detection and diagnosis to palliative and survivorship care. Methods: Based on a literature review and expert opinions, we summarized current practice and recommendations on the following aspects of childhood cancer in Latin America: diagnostic processes and time to diagnosis, stage at diagnosis, treatments and complications, survivorship programs and palliative care and end-of-life services. Results: Latin America is a huge and heterogeneous continent. Identified barriers show similar problems between countries, both logistically (time and distance to centers, treatment interruptions) and financially (cost of care, cost of absence from work). Governmental actions in several countries improved the survival of children with cancer, but difficulties persist in timely diagnosis and providing adequate treatment to all childhood cancer patients in institutions with complete infrastructure. Treatment abandonment is still common, although the situation is improving. Cancer care in the region has mostly focused on acute treatment of the disease and has not adequately considered palliative and end-of-life care and monitoring of survivors. Conclusions: Decentralizing diagnostic activities and centralizing specialized treatment will remain necessary; measures to facilitate logistics and costs of transportation of the child and caretakers should be implemented. Twinning actions with specialized centers in high income countries for help in diagnosis, treatment and education of professionals and family members have been shown to work. Palliative and end-of-life care as well as childhood cancer survivorship plans are needed.
AMOR: A proposed cooperative effort to improve outcomes of childhood cancer in Central America
Pediatric Blood & Cancer, 2005
The dramatic reduction of pediatric cancer mortality rates has been one of the greatest accomplishments of contemporary medicine. About 80% of children with cancer are now expected to be cured by current therapies. However, most of the world's children have no access to cancer treatment. The translation of effective pediatric cancer therapies to impoverished regions of the world presents an enormous challenge to the health care profession. Over the past 20 years, efforts have been under way to extend adequate cancer treatment to an increasing number of children in developing countries. These initiatives, collectively designated “twinning programs,” consist essentially of a partnership between a pediatric cancer unit in a developing country and a group of health care providers in the developed world. Here we review the twinning programs that have been implemented in Central America, discuss their impact on the development of local resources and the outcome of childhood cancer, and propose a collaborative research initiative aimed at improving the international dissemination of progress in pediatric hematology-oncology. © 2005 Wiley-Liss, Inc.
Establishing a Pediatric Palliative care team in an Argentinian Hospital
European Journal of Palliative Care
P alliative medicine emerged as a specialty 40 years ago. As is the case for all paediatric specialties, palliative medicine for children cannot be simply replicated from the adult model, but must be developed taking into account the practice and experience of paediatricians. Palliative care for children and young people with life-threatening or life-limiting conditions embraces physical, cognitive, emotional, social and spiritual aspects. Its goal is to enhance the patient's quality of life and to help the family, by managing symptoms and providing psychosocial care, respite care and bereavement support. Paediatric palliative care has developed from the hospice philosophy to offer a complement or alternative to curative treatment in children with advanced, complex and progressive disease, and to provide care for those in the terminal phase. Paediatric palliative care should be provided from the time of diagnosis and during the whole disease trajectory; it may need to be provide...
Quality Indicators in Pediatric Palliative Care: Considerations for Latin America
Children, 2021
Pediatric palliative care is a growing field in which the currently available resources are still insufficient to meet the palliative care needs of children worldwide. Specifically, in Latin America, pediatric palliative care services have emerged unevenly and are still considered underdeveloped when compared to other regions of the world. A crucial step in developing pediatric palliative care (PPC) programs is delineating quality indicators; however, no consensus has been reached on the outcomes or how to measure the impact of PPC. Additionally, Latin America has unique sociocultural characteristics that impact the perception, acceptance, enrollment and implementation of palliative care services. To date, no defined set of quality indicators has been proposed for the region. This article explores the limitations of current available quality indicators and describes the Latin American context and how it affects PPC development. This information can help guide the creation of standar...
Journal of Global Oncology, 2018
Purpose Palliative care remains an urgent, neglected need in the developing world. Global disparities in end-of-life care for children, such as those with advanced cancers, result from barriers that are complex and largely unstudied. This study describes these barriers at Bugando Medical Center, one of three consultant hospitals in Tanzania, to identify areas for palliative care development suitable to this context. Methods In-depth interviews were conducted with 20 caregivers of pediatric patients with cancer and 14 hospital staff involved in pediatric end-of-life care. This was combined with 1 month of participant observation through direct clinical care of terminally ill pediatric patients. Results Data from interviews as well as participant observation revealed several barriers to palliative care: financial, infrastructure, knowledge and cultural (including perceptions of pediatric pain), and communication challenges. Although this study focused on barriers, what also emerged were the unique advantages of end-of-life care in this setting, including community cohesiveness and strong faith background. Conclusion This study provides a unique but focused description of barriers to palliative care common in a low-resource setting, extending beyond resource needs. This multidisciplinary qualitative approach combined interviews with participant observation, providing a deeper understanding of the logistical and cultural challenges in this setting. This new understanding will inform the design of more effective—and more appropriate—palliative care policies for young patients with cancer in the developing world.