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.

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.

scholarly journals Evaluating the Need for Integrated Pediatric Palliative Care Services in a Pediatric Oncology Setting: A Retrospective Audit

2021 ◽  
Vol 27 ◽  
pp. 286-290
Author(s):  
Vasudeva Bhat K ◽  
Krithika S Rao ◽  
Kalasekhar Vijayasekharan ◽  
Archana Mevalegire Venkatagiri ◽  
S Ashwini ◽  
...  
Keyword(s):  
Palliative Care ◽  
Pediatric Oncology ◽  
Psychosocial Support ◽  
Integrated Approach ◽  
Care Plan ◽  
Pediatric Palliative Care ◽  
Referral Criteria ◽  
Retrospective Audit ◽  
Palliative Care Services ◽  
Referral Practice

Objectives: Early integrated palliative care has shown to improve the quality of life in patients with cancer. During the past decade, pediatric palliative care has become an established area of medical expertise, however due to scant information available regarding the triggers for referral and referral practice very few children receive a formal palliative care consult. Materials and Methods: A retrospective audit of medical case records of pediatric oncology patients over a period of 1 year from September 30, 2019, to September 30, 2020, was conducted. Demographic details, diagnosis, staging, clinical parameters, reason for referral, and palliative care plan were captured in a predesigned pro forma. Results: Among 126 children with cancer, 27 (21.4%) patients were referred to palliative care. Majority 21 (77%) referrals were inpatient consults. Symptom management 17 (44.7%) was the most common trigger for referral followed by referrals for psychosocial support 12 (14.4%). Children with solid tumors 16 (59%) were more often referred than hematological malignancies. Among those needing end of life care, 8 (88.8%) out of 9 families preferred home than hospital. Conclusion: Low incidence of palliative care referral and presence of symptoms as a trigger for palliative care referral suggests gaps in the integrated approach. The study findings prompt a review of palliative care referral criteria and referral practice in a pediatric oncology setting.

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

Acceptance and Benefits of Two Different Strategies to Timely Integrate Specialist Palliative Care into Routine Cancer Care – a Randomized Pilot Study

2021 ◽  
Author(s):  
Anneke Ullrich ◽  
Svenja Wilde ◽  
Volkmar Müller ◽  
Marianne Sinn ◽  
Christoffer Gebhardt ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advance Directives ◽  
Cancer Care ◽  
Psychosocial Support ◽  
Information Provision ◽  
Specialist Palliative Care ◽  
Incurable Cancer ◽  
Advance Care ◽  
Integration Strategies ◽  
Qualitative Part

Background / Aims: To investigate the acceptance and benefits of two different strategies to timely integrate specialist palliative care (SPC) in routine cancer care: commonly recommended early SPC counselling versus an informational brochure plus SPC counselling upon patients’ request. Methods: Patients diagnosed with incurable cancer within the last 6-12 weeks were sequentially randomized. Endpoints were acceptance of the two strategies after 3 months as well as use of SPC counselling and psychosocial support, presence of advance directives, palliative care outcome (IPOS), psychosocial distress (DT) and after 3 and 6 months. In a qualitative part, SPC consultations were analyzed using content analysis. Results: Overall, 43 patients received SPC counselling and 37 a brochure with SPC counselling on demand. In the brochure group, only one patient later registered for SPC counselling from own initiative. SPC timing was appropriate in 70% of patients (75% counselling / 61% brochure, n.s.). Sufficiency, helpfulness and relevance of information, provision of security and help with finding contacts for specific support were perceived adequate in both groups. No significant differences were found regarding potential effects of the interventions on IPOS or DT after 3 and 6 months. Use of psychosocial support was comparable between the groups and 4 patients had new advance directives (3 counselling / 1 brochure). Five key themes of SPC consultations were identified: symptoms, rapport, coping, illness understanding, and advance care planning. Conclusions: Both SPC integration strategies were well accepted. However, patients seem not to benefit from a brochure in terms of initiating SPC counselling timely after a palliative cancer diagnosis.

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

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.

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