Estimating the Global Need for Palliative Care for Children

February 22, 2016 updated by: International Children's Palliative Care Network

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

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 Overview

Status

Completed

Conditions

Intervention / Treatment

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 Type

Observational

Enrollment (Actual)

18837613

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United States
    • Virginia
      • Fairfax Station, Virginia, United States, 22039
        • International Children's Palliative Care Network

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

No older than 19 years (ADULT, CHILD)

Accepts Healthy Volunteers

Yes

Genders Eligible for Study

All

Sampling Method

Probability Sample

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.

Description

Inclusion Criteria:

  • have one of the conditions above

Exclusion Criteria:

  • greater than 19 years of age

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
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

What is the study measuring?

Primary Outcome Measures

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

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

International Children's Palliative Care Network

Collaborators

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

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

June 1, 2014

Primary Completion (ACTUAL)

September 1, 2015

Study Completion (ACTUAL)

October 1, 2015

Study Registration Dates

First Submitted

August 19, 2015

First Submitted That Met QC Criteria

September 16, 2015

First Posted (ESTIMATE)

September 17, 2015

Study Record Updates

Last Update Posted (ESTIMATE)

February 23, 2016

Last Update Submitted That Met QC Criteria

February 22, 2016

Last Verified

February 1, 2016

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • 0001 (Cancer Research Institute)

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

YES

IPD Plan Description

A manuscript reporting results has been prepared and is being reviewed for journal publication.

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

Clinical Trials on Cardiovascular Disease

Clinical Trials on Need for children's palliative care

Search Similar Trials

Sponsors and Collaborators

Medical Conditions

Drug Interventions

CROs by country

CROs in Slovenia

Conditions

Rare Diseases

Drug Interventions

Dietary Supplements

Sponsor/Collaborators

Locations

3
Subscribe