Physician Perceptions of Pediatric Palliative Care for Children with Cancer in Latin America

2021 ◽  
Author(s):  
Michael J. McNeil ◽  
Bella Ehrlich ◽  
Huiqi Wang ◽  
Yuvanesh Vedaraju ◽  
Marisol Bustamante ◽  
...  
Keyword(s):  
Palliative Care ◽  
Latin America ◽  
Pediatric Palliative Care ◽  
Children With Cancer ◽  
Physician Perceptions

Assessment of physician perceptions of pediatric palliative care for children with cancer in Latin America.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 10053-10053
Author(s):  
Michael McNeil ◽  
Bella Ehrlich ◽  
Marisol Bustamante ◽  
Veronica Dussel ◽  
Paola Friedrich ◽  
...  
Keyword(s):  
Palliative Care ◽  
Latin America ◽  
Palliative Treatment ◽  
Physical Symptoms ◽  
World Health ◽  
Pediatric Palliative Care ◽  
Children With Cancer ◽  
Early Integration ◽  
Cancer Management ◽  
Care Integration

10053 Background: 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.

A simple system for symptom assessment in pediatric palliative care patients with cancer: A preliminary report.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 81-81
Author(s):  
Kevin Madden ◽  
Maira Charone ◽  
Seyedeh Dibaj ◽  
Sarah Mills ◽  
Janet L. Williams ◽  
...  
Keyword(s):  
Palliative Care ◽  
Symptom Burden ◽  
Standard Of Care ◽  
Symptom Assessment ◽  
Primary Objective ◽  
Assessment Tools ◽  
Pediatric Palliative Care ◽  
Care Practice ◽  
Children With Cancer ◽  
Medical Teams

81 Background: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief and simple questions to be systematically given to children and their caregivers. The primary objective was to determine the percentage of eligible children and caregivers exposed to the questions that were able to complete the assessment. Secondary objectives included documenting the symptom burden at time of consultation, evaluating the level of agreement in symptom reporting between children and caregivers, as well as between children/caregivers and the referring medical team. Methods: A series of systematic questions were presented to all caregivers (if present) and children who were 7 years of age or older at time of initial consultation with pediatric palliative care. Results: 122 consecutive children and caregivers were given the survey. 107/108 (99%) of eligible caregivers and 83/97 (86%) of eligible children successfully completed the survey. Lack of appetite (child – 72/83, 87%; caregiver – 89/107, 83%) and pain (child – 71/83, 86%; caregiver – 86/107, 80%) were the most commonly reported symptoms. Caregivers reported irritability (p = 0.005) and nervousness (p < 0.0001) more frequently than children. Referring medical teams significantly under-diagnosed psychological and other less clinically evident symptoms such as anorexia, fatigue, and insomnia (p < 0.0001). Conclusions: Our series of questions is easy to complete by children and caregivers. Systematic symptom assessment of children with cancer needs to become a true standard of care.

scholarly journals The Most Important Aspects for a Good Death: Perspectives from Parents of Children with Cancer

2021 ◽  
Vol 58 ◽  
pp. 004695802110285
Author(s):  
Ji Yoon Kim ◽  
Bu Kyung Park
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Linear Regression Analysis ◽  
Living Will ◽  
Good Death ◽  
Pediatric Palliative Care ◽  
Children With Cancer ◽  
Cross Sectional ◽  
Cancer Data

A good death is an important concept in pediatric palliative care. To improve the quality of pediatric palliative care, it is imperative to identify which domain is most important for a good death among children with cancer and their parents. This study aimed to (1) assess the essential domains for a good death from the perspectives of parents whose children have cancer using the Good Death Inventory (GDI) and (2) examine which characteristics are associated with the perception of a good death. An anonymous cross-sectional questionnaire was administered to 109 parents of children with cancer. Data were collected using a validated Korean version of the GDI. Descriptive statistics, t-test, and ANOVA were used to identify the preferred GDI domains. Multiple linear regression analysis was performed to identify factors associated with the GDI scores. The most essential domains for a good death included “maintaining hope and pleasure” and “being respected as an individual.” The factors most strongly associated with the perception of a good death were end-of-life plan discussion with parents or others and parental agreement with establishing a living will. Encouraging families to discuss end-of-life care and establish a living will in advance can improve the quality of death among children with cancer.

Did Increased Availability of Pediatric Palliative Care Lead to Improved Palliative Care Outcomes in Children with Cancer?

2013 ◽  
Vol 16 (9) ◽  
pp. 1034-1039 ◽  
Author(s):  
Pia Schmidt ◽  
Michael Otto ◽  
Tanja Hechler ◽  
Sabine Metzing ◽  
Joanne Wolfe ◽  
...  
Keyword(s):  
Palliative Care ◽  
Pediatric Palliative Care ◽  
Children With Cancer ◽  
Care Outcomes

Challenges of palliative care for children with cancer in Iran: a review

2019 ◽  
Author(s):  
Maryam Rassouli MD ◽  
Naiire Salmani MD ◽  
Zahra Mandegari MSc ◽  
Atena Dadgari MSc ◽  
Bahare Fallah Tafti MSc ◽  
...  
Keyword(s):  
Palliative Care ◽  
Insurance Coverage ◽  
Home Care Services ◽  
Pediatric Palliative Care ◽  
Children With Cancer ◽  
Care Services ◽  
Life Threatening Illness ◽  
Relieve Pain ◽  
Palliative Care Services ◽  
Life Threatening

Pediatric palliative care is a holistic caring approach for children and families that begins with diagnosis of a life-threatening illness and continues until death; it aimed to relieve pain and other symptoms in physical, mental, social and spiritual aspects. In spite of available evidence concerning optimal outcomes of the provision of palliative care, establishment of a palliative care system for children has hardly been feasible so far due to a number of challenges. Therefore, this review study aimed at identifying the challenges of the provision of pediatric palliative care along with the relevant solutions. The identified challenges were classified into two categories including structure-based challenges (i.e. lack of a clear structure in the health system and classification of services, shortage of specialized staff, insufficient home care services, absence of health care tariffs along with insurance coverage of palliative care services) and process-based challenges (i.e. absence of guidelines, lack of educational programs for family, family attitudes and beliefs, communication barriers, and lack of access to opioids). Thereafter, the solutions for each challenge are provided in accordance with the available literature separately. Given the significance of palliative care for children with cancer and in order to improve the quality of life of the children and the families, it appears necessary that policymakers and managers take account of the challenges as well as the feasibility and the implementation of provided solutions.

Early palliative care involvement for children with cancer.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 26-26
Author(s):  
Laila Mahmood ◽  
Ann Dozier ◽  
James Dolan ◽  
Denise Casey ◽  
David Nathan Korones
Keyword(s):  
Palliative Care ◽  
Overall Survival ◽  
High Risk ◽  
Study Entry ◽  
Pediatric Palliative Care ◽  
Newly Diagnosed ◽  
Children With Cancer ◽  
Early Palliative Care ◽  
Palliative Care Consultation ◽  
Care Consultation

26 Background: Although the overall survival of children with cancer exceeds 80%, these children experience significant physical, emotional, social and spiritual suffering. That suffering is even more profound for the 20% of children who succumb to their disease. We therefore conducted a prospective study to assess the feasibility and impact of early palliative care involvement for children with high risk malignancies. Objective: To determine if early palliative care involvement for high risk pediatric oncology patients is feasible, acceptable to patients, families and oncology teams, and helps with symptom management and communication. Methods: This was a prospective survey-based study. Children with cancer treated at University of Rochester were eligible to participate if they had a high risk malignancy, defined as (1) having a newly-diagnosed malignancy with an estimated overall survival of < 50%, (2) requiring hematopoietic stem cell transplantation (HSCT), and/or (3) any relapsed, recurrent or progressive cancer. Parents of these children or children >18YO were surveyed upon study entry, and 3 and 6 months later to assess the impact of early and ongoing pediatric palliative care involvement. Results: 20/25 eligible patients received a palliative care consultation at diagnosis; 16 families participated in the study. Six children had a newly diagnosed high risk malignancy, nine had recurrent disease and one child had a HSCT. Median age of the children was 5 years (0.1-20 year).The most frequent symptoms at the time of study entry were pain (75%), nausea/vomiting (69%), constipation (44%), and fatigue (44%). 75%, 73%, 43% and 43% reported successful treatment of pain, nausea/vomiting, constipation, and fatigue respectively. The proportion of children with each symptom decreased at 3 months except for fatigue. There was high satisfaction with the oncology and pediatric palliative care teams at baseline and 3 and 6 months. No families or oncologists declined an early palliative care consultation. Conclusions: Our results suggest that an early palliative care consultation is feasible for high risk children with cancer and that the palliative care team can work successfully with the primary oncology team to foster symptom control and communication.

Predictors of Specialized Pediatric Palliative Care Involvement and Impact on Patterns of End-of-Life Care in Children With Cancer

2018 ◽  
Vol 36 (8) ◽  
pp. 801-807 ◽  
Author(s):  
Kimberley Widger ◽  
Rinku Sutradhar ◽  
Adam Rapoport ◽  
Christina Vadeboncoeur ◽  
Shayna Zelcer ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Palliative Care ◽  
Intensive Care ◽  
Intensive Care Unit Admission ◽  
End Of Life ◽  
End Of Life Care ◽  
Pediatric Palliative Care ◽  
Life Care ◽  
Children With Cancer ◽  
The Impact

Purpose The impact of specialized pediatric palliative care (SPPC) teams on patterns of end-of-life care is unknown. We sought to determine (1) which children with cancer access SPPC and (2) the impact of accessing SPPC on the risk of experiencing high-intensity end-of-life care (intensive care unit admission, mechanical ventilation, or in-hospital death). Methods Using a provincial childhood cancer registry, we assembled a retrospective cohort of Ontario children with cancer who died between 2000 and 2012 and received care through pediatric institutions with an SPPC team. Patients were linked to population-based administrative data capturing inpatient, outpatient, and emergency visits. Children were classified as having SPPC, general palliative care, or no palliative care on the basis of SPPC clinical databases, physician billing codes, or inpatient diagnosis codes. Results Of the 572 children, 166 (29%) received care from an SPPC team for at least 30 days before death, and 100 (17.5%) received general palliative care. SPPC involvement was significantly less likely for children with hematologic cancers (OR, 0.3; 95% CI, 0.3 to 0.4), living in the lowest income areas (OR, 0.4; 95% CI, 0.2 to 0.8), and living further from the treatment center (OR, 0.5; 95% CI, 0.4 to 0.5). SPPC was associated with a five-fold decrease in odds of intensive care unit admission (OR, 0.2; 95% CI, 0.1 to 0.4), whereas general palliative care had no impact. Similar associations were seen with all secondary indicators. Conclusion When available, SPPC, but not general palliative care, is associated with lower intensity care at the end of life for children with cancer. However, access remains uneven. These results provide the strongest evidence to date supporting the creation of SPPC teams.

scholarly journals Delivering Hospital-Based Pediatric Palliative Care: The Symptoms, Interventions, and Outcomes for Children With Cancer in Bangladesh

2020 ◽  
pp. 884-891
Author(s):  
Megan Doherty ◽  
Liam Power ◽  
Chloé Thabet
Keyword(s):  
Palliative Care ◽  
Cancer Care ◽  
Psychosocial Support ◽  
Lymphoblastic Leukemia ◽  
Pilot Project ◽  
Physical Symptoms ◽  
Health Care Facilities ◽  
Pediatric Palliative Care ◽  
Children With Cancer ◽  
Clinical Records

PURPOSE The majority of pediatric cancer deaths occur in low- and middle-income countries (LMICs). Pediatric palliative care (PPC) focuses on relieving physical, psychosocial, and spiritual suffering throughout the continuum of cancer care and is considered integral to cancer care for children in all settings. There is limited evidence from LMICs about the characteristics, symptoms, and outcomes of children with cancer who receive PPC, which is needed to define the global need and guide the development of these services. METHODS This retrospective review of clinical records of children who received PPC was conducted during a pilot project (January 2014-August 2015) that implemented a PPC team at a tertiary hospital in Dhaka, Bangladesh. Clinical data on diagnosis, symptoms, treatment status, deaths, and key palliative care interventions were collected and analyzed using descriptive statistics. RESULTS There were 200 children who received PPC during the pilot project. The most common diagnoses were acute lymphoblastic leukemia (62%) and acute myeloid leukemia (11%). Psychosocial support for children (n = 305; 53%) and management of physical symptoms (n = 181; 31%) were the most common types of interventions provided. The most frequently recorded symptoms were pain (n = 60; 30%), skin wounds (n = 16; 8%), and weakness (n = 9; 5%). The most common medications prescribed were morphine (n = 32) and paracetamol (n = 21). CONCLUSION A hospital-based PPC service addresses pain and symptom concerns as well as psychosocial needs for children with cancer and their families in a setting where resources are limited. Health care facilities should incorporate palliative care into the care of children with cancer to address the needs of children and their families.

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