Estimating the Global Need for Palliative Care for Children

Sponsor

International Children's Palliative Care Network (Other)

Overall Status

Completed

CT.gov ID

NCT02553148

Collaborator

UNICEF (Other)

18,837,613

Enrollment

Location

Duration (Months)

1177350.8

Patients Per Site Per Month

Study Details

Study Description

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.

Condition or Disease	Intervention/Treatment	Phase
Cancer Congenital Anomalies Cardiovascular Disease HIV	Other: Need for children's palliative care

Detailed 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.

Study Design

Study Type:

Observational

Actual Enrollment :

18837613 participants

Time Perspective:

Retrospective

Official Title:

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

Study Start Date :

Jun 1, 2014

Actual Primary Completion Date :

Sep 1, 2015

Actual Study Completion Date :

Oct 1, 2015

Arms and Interventions

Arm	Intervention/Treatment
Argentina One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Armenia One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Australia One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Brazil One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
China One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Egypt One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Ethiopia One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Germany One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
India One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Indonesia One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Jordan One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Kenya One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Kyrgyzstan One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Malaysia One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Malawi One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Mexico One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Russia One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Serbia One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
South Africa One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Tajikistan One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
United Kingdom One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
United States One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care
Zimbabwe One of the 23 countries studied	Other: Need for children's palliative care Need for children's palliative care

Outcome Measures

Primary Outcome Measures

Need for Children's Palliative Care [1 year]
Estimation of need in a stratified sample of countries to derive a global estimate

Eligibility Criteria

Criteria

Ages Eligible for Study:

N/A to 19 Years

Sexes Eligible for Study:

All

Accepts Healthy Volunteers:

Yes

Inclusion Criteria:

have one of the conditions above

Exclusion Criteria:

greater than 19 years of age

Contacts and Locations

Locations

	Site	City	State	Country	Postal Code
1	International Children's Palliative Care Network	Fairfax Station	Virginia	United States	22039

Sponsors and Collaborators

International Children's Palliative Care Network
UNICEF

Investigators

Study Chair: Joan Marston, MA, RN, International Children's Palliative Care Network
Principal Investigator: Stephen R Connor, PhD, International Children's Palliative Care Network