Estimating the Global Need for Palliative Care for Children
1 other identifier
observational
18,837,613
1 country
1
Brief Summary
A cross-sectional analysis of prevalence data from a stratified sample of 23 countries used to estimate the global need for palliative care for children aged 0-19 years. Prevalence data, from the Institute for Health Metrics and Evaluation, was for 12 major diagnostic groups needing children's palliative care according to WHO and UNICEF guidelines.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jun 2014
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
June 1, 2014
CompletedFirst Submitted
Initial submission to the registry
August 19, 2015
CompletedPrimary Completion
Last participant's last visit for primary outcome
September 1, 2015
CompletedFirst Posted
Study publicly available on registry
September 17, 2015
CompletedStudy Completion
Last participant's last visit for all outcomes
October 1, 2015
CompletedFebruary 23, 2016
February 1, 2016
1.3 years
August 19, 2015
February 22, 2016
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Need for Children's Palliative Care
Estimation of need in a stratified sample of countries to derive a global estimate
1 year
Study Arms (23)
Argentina
One of the 23 countries studied
Armenia
One of the 23 countries studied
Australia
One of the 23 countries studied
Brazil
One of the 23 countries studied
China
One of the 23 countries studied
Egypt
One of the 23 countries studied
Ethiopia
One of the 23 countries studied
Germany
One of the 23 countries studied
India
One of the 23 countries studied
Indonesia
One of the 23 countries studied
Jordan
One of the 23 countries studied
Kenya
One of the 23 countries studied
Kyrgyzstan
One of the 23 countries studied
Malaysia
One of the 23 countries studied
Malawi
One of the 23 countries studied
Mexico
One of the 23 countries studied
Russia
One of the 23 countries studied
Serbia
One of the 23 countries studied
South Africa
One of the 23 countries studied
Tajikistan
One of the 23 countries studied
United Kingdom
One of the 23 countries studied
United States
One of the 23 countries studied
Zimbabwe
One of the 23 countries studied
Interventions
Need for children's palliative care
Eligibility Criteria
All children in sample countries with the following diagnoses included: all cancers (except non-malignant skin); HIV/AIDS; cardiovascular diseases; cirrhosis of liver; congenital anomalies; endocrine, blood, \& immune disorders; meningitis; kidney diseases; protein energy malnutrition; neurological conditions; neonatal conditions; drug-resistant tuberculosis. Cases with sequela not associated with need for palliative care were removed.
You may qualify if:
- have one of the conditions above
You may not qualify if:
- greater than 19 years of age
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- International Children's Palliative Care Networklead
- UNICEFcollaborator
Study Sites (1)
International Children's Palliative Care Network
Fairfax Station, Virginia, 22039, United States
Related Publications (7)
Institute of Medicine (US) Committee on Palliative and End-of-Life Care for Children and Their Families; Field MJ, Behrman RE, editors. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington (DC): National Academies Press (US); 2003. Available from http://www.ncbi.nlm.nih.gov/books/NBK220818/
PMID: 25057608BACKGROUNDHarding R, Brits H, Penfold S. Paediatric antiretroviral therapy outcomes under HIV hospice care in South Africa. Int J Palliat Nurs. 2009 Mar;15(3):142-5. doi: 10.12968/ijpn.2009.15.3.41093.
PMID: 19537535BACKGROUNDConnor S, Sisimayi C, Downing J, King E, Lim Ah Ken P, Yates R, Marston J. Assessment of the need for palliative care for children in South Africa. Int J Palliat Nurs. 2014 Mar;20(3):130-4. doi: 10.12968/ijpn.2014.20.3.130.
PMID: 24675539BACKGROUNDHain R, Heckford E, McCulloch R. Paediatric palliative medicine in the UK: past, present, future. Arch Dis Child. 2012 Apr;97(4):381-4. doi: 10.1136/archdischild-2011-300432. Epub 2011 Oct 28.
PMID: 22039176BACKGROUNDFraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, Parslow RC. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012 Apr;129(4):e923-9. doi: 10.1542/peds.2011-2846. Epub 2012 Mar 12.
PMID: 22412035BACKGROUNDKnapp C, Woodworth L, Wright M, Downing J, Drake R, Fowler-Kerry S, Hain R, Marston J. Pediatric palliative care provision around the world: a systematic review. Pediatr Blood Cancer. 2011 Sep;57(3):361-8. doi: 10.1002/pbc.23100. Epub 2011 Mar 17.
PMID: 21416582BACKGROUNDHain R, Devins M, Hastings R, Noyes J. Paediatric palliative care: development and pilot study of a 'Directory' of life-limiting conditions. BMC Palliat Care. 2013 Dec 11;12(1):43. doi: 10.1186/1472-684X-12-43.
PMID: 24330676BACKGROUND
MeSH Terms
Conditions
Interventions
Condition Hierarchy (Ancestors)
Intervention Hierarchy (Ancestors)
Study Officials
- STUDY CHAIR
Joan Marston, MA, RN
International Children's Palliative Care Network
- PRINCIPAL INVESTIGATOR
Stephen R Connor, PhD
International Children's Palliative Care Network
Study Design
- Study Type
- observational
- Time Perspective
- RETROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
August 19, 2015
First Posted
September 17, 2015
Study Start
June 1, 2014
Primary Completion
September 1, 2015
Study Completion
October 1, 2015
Last Updated
February 23, 2016
Record last verified: 2016-02
Data Sharing
- IPD Sharing
- Will share
A manuscript reporting results has been prepared and is being reviewed for journal publication.