181 results match your criteria: "International Children's Palliative Care Network & Makerere University[Affiliation]"

Background: The Lancet Commission on global access to palliative care and pain relief introduced the concept of serious health-related suffering (SHS) to measure the worldwide dearth of palliative care. This Article provides an extended analysis of SHS from 1990 to 2021 and the corresponding global palliative care need.

Methods: This Article is the first to apply the SHS 2·0 method published in 2024, incorporating prevalence data from the Global Burden of Diseases, Injuries, and Risk Factors Study to improve non-decedent estimates that account for country-level epidemiological variation; adjusting for non-decedent double counting of HIV/AIDS, cancer, cerebrovascular disease, and dementia; improving the non-decedent estimates for cancer using survivorship data from the Global Cancer Observatory and for HIV/AIDS incorporating access to antiretroviral therapy; differentiating by sex; considering more specific age groups allowing for better estimates, especially in children; and adding endocrine, metabolic, blood, and immune disorders to the health conditions causing SHS.

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Background: Paediatric palliative care (PPC) is considered an essential component of the management of children and adolescents with cancer. The International Society of Paediatric Oncology Global Mapping Programme (SIOP GMP) surveyed hospital-based paediatric oncology facilities across Africa from 2018 to 2020 to document PPC and provision of PPC services. We aimed to assess possible correlations between existing PPC services across Africa with economic indicators.

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Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital.

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Distributed Opioids in Morphine Equivalent: A Global Measure of Availability for Palliative Care.

J Pain Symptom Manage

February 2025

International Association of Hospice and Palliative Care (IAHPC) (L.D.L.), Houston, TX, USA; Department of Palliative Medicine (V.V.E.L.R.), University Hospital Bonn, Bonn, Germany.

Article Synopsis
  • Estimates show a significant need for palliative care in low- and middle-income countries, particularly regarding access to essential opioids for pain relief.
  • The DOME (Distributed Opioids in Morphine Equivalents) methodology quantifies this need by converting procured opioid quantities into morphine equivalents, allowing for a clearer assessment of unmet pain relief requirements.
  • By using DOME and its metrics, countries can evaluate their health systems' capacity for palliative care and address gaps, ultimately improving health coverage and access to necessary treatments.
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Background: Supportive care to ensure optimal quality of life is an essential component of cancer care and symptom control across the lifespan. Ongoing advances in cancer treatment, increasing toxicity from many novel treatment regimes, and variations in access to care and cancer outcomes across the globe and resource settings present significant challenges for supportive care delivery. To date, no overarching framework has been developed to guide supportive care development worldwide.

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Background: Palliative care is seldom integrated in healthcare in fragile, conflict affected and vulnerable settings with significant refugee populations.

Aim: This study aimed to evaluate the integration of palliative care into a fragile, conflict affected and vulnerable community in Northern Uganda.

Design: Consecutive Rapid Participatory Appraisals were conducted to evaluate the integration of palliative care in Adjumani District.

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Late effects after allogeneic haematopoietic cell transplantation in children and adolescents with non-malignant disorders: a retrospective cohort study.

Lancet Child Adolesc Health

October 2024

Center for International Blood and Marrow Transplant Research, Medical College of Wisconsin, Milwaukee, WI, USA; Division of Pediatric Hematology/Oncology/Blood and Marrow Transplant, Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA. Electronic address:

Article Synopsis
  • * A retrospective study analyzed data from 5,790 young patients who underwent HCT to evaluate the incidence of late effects and their associated risk factors, focusing on various health complications like avascular necrosis and diabetes.
  • * The study included patients from diverse backgrounds, revealing that 60.5% were male and most were white, with major findings regarding the timing and prevalence of complications occurring within five to seven years post-transplant.
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Comparison of Patient Health Questionnaire-9, Edinburgh Postnatal Depression Scale and Hospital Anxiety and Depression - Depression subscale scores by administration mode: An individual participant data differential item functioning meta-analysis.

J Affect Disord

September 2024

Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada; Department of Epidemiology, Biostatistics and Occupational Health, McGill University, Montréal, Québec, Canada; Department of Medicine, McGill University, Montréal, Québec, Canada; Department of Psychiatry, McGill University, Montréal, Québec, Canada; Department of Psychology, McGill University, Montréal, Québec, Canada; Biomedical Ethics Unit, McGill University, Montréal, Québec, Canada.

Article Synopsis
  • * Statistically significant differential item functioning (DIF) was found for most questionnaire items, but this had minimal impact on total scores.
  • * Researchers and clinicians can choose the administration method based on what works best for patients, considering preferences, feasibility, or cost, as score differences were negligible.
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Nursing leadership.

Int J Palliat Nurs

May 2024

Chief Executive International Children's Palliative Care Network.

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Background: The 2023 International Pediatric Ventilator Liberation Clinical Practice Guidelines provided evidence-based recommendations to guide pediatric critical care providers on how to perform daily aspects of ventilator liberation. However, because of the lack of high-quality pediatric studies, most recommendations were conditional based on very low to low certainty of evidence.

Research Question: What are the research gaps related to pediatric ventilator liberation that can be studied to strengthen the evidence for future updates of the guidelines?

Study Design And Methods: We conducted systematic reviews of the literature in eight predefined Population, Intervention, Comparator, Outcome (PICO) areas related to pediatric ventilator liberation to generate recommendations.

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International consensus on sleep problems in pediatric palliative care: Paving the way.

Sleep Med

July 2024

Pediatric Palliative Care, Pain Service, Department of Women's and Children's Health, University Hospital of Padua, Padua, Italy.

Objective: Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking. The application of general pediatric sleep recommendations appears insufficient to address the unique challenges of the PPC dimension in terms of disease variability, duration, comorbidities, complexity of needs, and particular features of sleep problems related to hospice care.

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Background: The optimal timing of vaccination with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) vaccines after cellular therapy is incompletely understood. The objectives of this study are to determine whether humoral and cellular responses after SARS-CoV-2 vaccination differ if initiated <4 months versus 4-12 months after cellular therapy.

Methods: We conducted a multicenter, prospective, observational study at 30 cancer centers in the United States.

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Article Synopsis
  • The GBD 2021 study aims to quantify the health impacts of 88 risk factors across 204 countries from 1990 to 2021, helping to inform public health policies.
  • The analysis utilized over 54,000 data sources to assess 631 risk-outcome pairs, determining how specific risk factors contribute to various health issues.
  • By calculating relative risks and population attributable fractions, the study provides insights into the disease burden tied to each risk factor, measured in disability-adjusted life-years (DALYs).
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Introduction: Retrospective data suggest that pediatric hematopoietic cell transplant (HCT) patients placed on non-invasive ventilation (NIV) prior to intubation have increased risk of mortality compared to patients who are intubated earlier in their course. The HCT-CI subgroup of the PALISI Network set out to gain a better understanding of factors that influence clinician's decisions surrounding timing of intubation of pediatric HCT patients.

Methods: We validated and distributed a brief survey exploring potential factors that may influence clinician's decisions around timing of intubation of pediatric HCT patients with acute lung injury (ALI).

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Article Synopsis
  • - The Children's Palliative Outcome Scale (C-POS) is being developed using best practices in outcome measure development, with a focus on cognitive testing to ensure the tool is clear and relevant for its intended users.
  • - A study involved cognitive interviews with children aged 5-17 with life-limiting conditions and their parents/carers, where adjustments were made to the C-POS to improve its comprehensibility and inclusivity, particularly for non-verbal children.
  • - The results suggest that cognitive interviewing improved the validity and acceptability of the C-POS, indicating it can be effectively used in routine practice for assessing the needs of children with life-limiting conditions.
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Background: The optimal treatment for malignant gastric outlet obstruction (GOO) remains uncertain. This systematic review aimed to comprehensively investigate the efficacy and safety of four palliative treatments for malignant GOO: gastrojejunostomy, endoscopic ultrasound-guided gastroenterostomy (EUS-GE), stomach-partitioning gastrojejunostomy (PGJ), and endoscopic stenting.

Methods: We searched PubMed, Embase, Cochrane Library, Scopus, and Web of Science databases, ClinicalTrials.

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Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology.

J Pain Symptom Manage

August 2024

University of Miami Institute for Advanced Study of the Americas, University of Miami (X.J.K., A.B., H.A.-O., W.E.R., R.C., V.V.E., F.M.K.), Miami, Florida, USA; Tómatelo a Pecho, A.C. (H.A-O., O.M., F.M.K.), Mexico City, Mexico; Sylvester Comprehensive Cancer Center, Miller School of Medicine (F.M.K.), University of Miami, Miami, Florida, USA; Leonard M. Miller School of Medicine (F.M.K.), University of Miami, Miami, Florida, USA.

Context: Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.

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The International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA) was established to aid understanding of the status and capacity of countries to provide optimal kidney care worldwide. This report presents the current characteristics of kidney care in the ISN Newly Independent States (NIS) and Russia region. Although the median prevalence of chronic kidney disease (CKD) was higher (11.

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Article Synopsis
  • - The GBD 2021 provides updated demographic estimates for 204 countries and territories, covering changes in mortality and life expectancy associated with the COVID-19 pandemic from 1950 to 2021, highlighting the significant impact of the pandemic on global health trends.
  • - To estimate mortality and impacts of the pandemic, researchers utilized over 22,000 data sources, including vital registration and surveys, while also accounting for various factors like migration, epidemics, and disasters that affect population health metrics.
  • - Advanced statistical methods, specifically spatiotemporal Gaussian process regression (ST-GPR), were employed to calculate under-5 and adult mortality rates, which were then used to create life tables, with adjustments made for countries severely affected by
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Article Synopsis
  • The study explores how to effectively implement person-centred outcome measures in palliative care for children with life-threatening or life-limiting conditions, as current evidence is limited compared to adult care.
  • Interviews with 26 children, 40 parents, 13 siblings, 15 healthcare professionals, and 12 health commissioners revealed strong support for such measures, highlighting benefits like improved communication and prioritization of patient needs.
  • Identified challenges include potential increased staff workload, risks around data usage, and barriers such as privacy concerns and the need for child-friendly language, while facilitators include clear communication of benefits and trusted professional support during the process.
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Article Synopsis
  • Children and young people with life-limiting conditions express their experiences using a mix of medical terms and personal language, indicating a deep understanding of their health.
  • A study involving 26 participants aged 5-17 revealed that they describe their condition through comparisons and metaphors, highlighting feelings of loss and isolation compared to peers.
  • By focusing on how these young individuals articulate their experiences, healthcare professionals can have more meaningful discussions that address their unique needs and concerns.
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The 4th Uganda Conference on Cancer and Palliative Care was held from the 14-15 September 2023. It was run jointly by the Uganda Cancer Institute and the Palliative Care Association of Uganda, in collaboration with the Ministry of Health. The conference was held at the Speke Resort, Munyonyo and 450 participants came together for a face-to-face conference following the virtual one held in 2021.

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