Estimating the Global Need for Palliative Care for Children

Study Overview
=================
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.

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.

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

Conditions
-----------------
Cancer, Congenital Anomalies, Cardiovascular Disease, HIV

Intervention / Treatment
-----------------
* Other: Need for children's palliative care


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

Ages Eligible for Study
-----------------
Maximum Age: 19 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
Accepts Healthy Volunteers

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

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

What is the study measuring?
-----------------
Primary Outcome Measures

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

 Terms related to the study
=================
Keywords Provided by Centre Hospitalier Valida
-----------------
prevalence, epidemiology, palliative care, pediatric