Expired Study
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Fairfax Station, Virginia 22039


Purpose:

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.


Study summary:

There is growing awareness that there are major gaps in access to children's palliative care (CPC) worldwide. Adults have a greater likelihood of receiving palliative care than children. Growing access to treatment services, and extended periods of wellness have led to some changes in the nature of the palliative care services required. Children are more resilient and more likely to require CPC for longer periods than adults. It is against this background that UNICEF and the International Children's Palliative Care Network (ICPCN), in collaboration with national palliative care associations, began a joint analysis to develop methods to assess critical needs and gaps in CPC. The initial assessment, conducted in Kenya, South Africa and Zimbabwe, aimed to analyse existing secondary data on palliative care to estimate the palliative care need amongst children and explore key gaps in the response with service providers. A report on this research, the methods used, and the results for South Africa was published in 2014. There is a lack of information regarding the actual need for palliative care for children, and assessment is a complicated process, due to uncertainty about the patient population and the nature of palliative care for children. Although there have been some studies focusing on the status of CPC in sub-Saharan Africa and the United Kingdom, there are differences in the scope and approach to the present study. A systematic review of the provision of CPC around the world, noted that over 65% of countries have no recognised CPC service provision, and concluded that service provision for CPC is not meeting the need in the majority of the world. Generally, studies estimating need for palliative care for children are based on mortality statistics for chronic, incurable illnesses. Estimates focused on end-of-life care, as in the Global Atlas of Palliative Care at the End of Life do not account for the children that need palliative care well before the last year of life and underestimate the need. The World Health Organization defines palliative care for children as a special, albeit closely related field to adult palliative care. An effort to define the many diseases and conditions requiring CPC a directory was published in 2013 with 376 potential diagnostic labels though the majority of deaths were from a small number.


Criteria:

Inclusion Criteria: - have one of the conditions above Exclusion Criteria: - greater than 19 years of age


Study is Available At:


Original ID:

0001


NCT ID:

NCT02553148


Secondary ID:


Study Acronym:


Brief Title:

Estimating the Global Need for Palliative Care for Children


Official Title:

Estimating the Global Need for Palliative Care for Children: A Cross Sectional Analysis


Overall Status:

Completed


Study Phase:

N/A


Genders:

Both


Minimum Age:

N/A


Maximum Age:

19 Years


Quick Facts

Healthy Volunteers
Oversight Has DMC
Study Is FDA Regulated
Study Is Section 801
Has Expanded Access

Study Source:

International Children's Palliative Care Network


Oversight Authority:

United States: Institutional Review Board


Reasons Why Stopped:


Study Type:

Observational


Study Design:

Time Perspective: Retrospective


Number of Arms:

0


Number of Groups:

23


Total Enrollment:

18837613


Enrollment Type:

Actual


Overall Contact Information

Official Name:Joan Marston, MA, RN
Study Chair
International Children's Palliative Care Network

Study Dates

Start Date:June 2014
Completion Date:October 2015
Completion Type:Actual
Primary Completion Date:September 2015
Primary Completion Type:Actual
Verification Date:February 2016
Last Changed Date:February 22, 2016
First Received Date:August 19, 2015

Study Outcomes

Outcome Type:Primary Outcome
Measure:Need for Children's Palliative Care
Time Frame:1 year
Safety Issues:False
Description:Estimation of need in a stratified sample of countries to derive a global estimate

Study Interventions

Intervention Type:Other
Name:Need for children's palliative care
Description:Need for children's palliative care
Arm Name:Argentina

Study Arms

Study Arm Type:Other
Arm Name:Argentina
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Armenia
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Australia
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Brazil
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:China
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Egypt
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Ethiopia
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Germany
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:India
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Indonesia
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Jordan
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Kenya
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Kyrgyzstan
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Malaysia
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Malawi
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Mexico
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Russia
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Serbia
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:South Africa
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Tajikistan
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:United Kingdom
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:United States
Description:One of the 23 countries studied
Study Arm Type:Other
Arm Name:Zimbabwe
Description:One of the 23 countries studied

Study Agencies

Agency Class:Other
Agency Type:Lead Sponsor
Agency Name:International Children's Palliative Care Network
Agency Class:Other
Agency Type:Collaborator
Agency Name:UNICEF

Samples and Retentions

Study Population: 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.
Sample Method:Probability Sample

Study References

Reference Type:Reference
Citation:Hain 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:24330676
Reference Type:Reference
Citation:Knapp 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. Review.
PMID:21416582
Reference Type:Reference
Citation:Fraser 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:22412035
Reference Type:Reference
Citation:Hain 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. Review.
PMID:22039176
Reference Type:Reference
Citation:Connor 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. Erratum in: Int J Palliat Nurs. 2014 Apr;20(4):201.
PMID:24675539
Reference Type:Reference
Citation:Harding 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.
PMID:19537535
Reference Type:Reference
Citation: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.
PMID:25057608

Data Source: ClinicalTrials.gov

Date Processed: January 21, 2020

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