Estimating the Global Need for Palliative Care for Children

Cancer Clinical Trial

Official title:

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

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT02553148
• Other study ID #: 0001
• Status: Completed
• Phase: N/A
• First received: August 19, 2015
• Last updated: February 22, 2016
• Start date: June 2014
• Est. completion date: October 2015

Study information

• Verified date: February 2016
• Source: International Children's Palliative Care Network
• Contact: n/a
• Is FDA regulated: No
• Health authority: United States: Institutional Review Board
• Study type: Observational

Clinical Trial 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.

Description:

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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 18837613
• Est. completion date: October 2015
• Est. primary completion date: September 2015
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: Both
• Age group: N/A to 19 Years

Eligibility

Inclusion Criteria:

• have one of the conditions above

Exclusion Criteria:

• greater than 19 years of age

Study Design

Time Perspective: Retrospective

Related Conditions & MeSH terms

• Cancer
• Cardiovascular Disease
• Cardiovascular Diseases
• Congenital Abnormalities
• Congenital Anomalies
• HIV

Intervention

Other:
• Need for children's palliative care
Need for children's palliative care

Locations

Country	Name	City	State
United States	International Children's Palliative Care Network	Fairfax Station	Virginia

Sponsors (2)

Lead Sponsor	Collaborator
International Children's Palliative Care Network	UNICEF

Country where clinical trial is conducted

United States, 

References & Publications (7)

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. — View 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. — View 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. — View 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. — View 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. — View 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. — View 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. — View Citation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Need for Children's Palliative Care	Estimation of need in a stratified sample of countries to derive a global estimate	1 year	No