End of life care for infants, children and young people

Not Applicable

Conditions: End-of-life care for infants, children and young people with life-limiting conditions
Not Applicable

Registration Number: ISRCTN15892454

Lead Sponsor: niversity of York

Brief Summary: Not available

Detailed Description: Not available

Recruitment & Eligibility

Status: Ongoing

Sex: All

Target Recruitment: 4377

Inclusion Criteria

Current exclusion criteria as of 04/03/2024:

WS1: The researchers intend to recruit all clinical leads of children’s cancer services, NNUs and PICUs, and all Chairs of paediatric palliative care networks.
WS2:
1. Parents whose child has died at least 3 months prior to contact and no more than 3 years prior to contact
2. Healthcare professionals working in a children's cancer service, PICU or NNU
WS3 Part 1: All children and TYAs with cancer in England who died between 2012-2020.
WS3 Part 2: Parents of Infants and children who received treatment in either a NICU or PICU and who have died in the last 5 years.

_____

Previous inclusion criteria:

WS1: The researchers intend to recruit all clinical leads of children’s cancer services, NNUs and PICUs, and all Chairs of paediatric palliative care networks.
WS2:
1. Parents whose child has died at least 3 months prior to contact and no more than 3 years prior to contact
2. Healthcare professionals working in a children's cancer service, PICU or NNU
WS3 Part 1: All children and TYAs with cancer in England who died between 2012-2020.
WS3 Part 2: Infants and children being treated in NNUs and PICUs and identified by staff as being at high risk of death

Exclusion Criteria

Current exclusion criteria as of 04/03/2024:

WS2: Parents whose child died less than 3 months ago or more than 3 years ago (at the time of recruitment)
WS3 Part 1: The researchers intend to use data of all children and TYAs who died in NHS cancer treatment centres 2012-2018
WS3 Part 2: Parents not able to give informed consent or under the age of 16. Parents in cases where there are safeguarding issues.

_____

Previous exclusion criteria:

WS2: Parents whose child died less than 3 months ago or more than 3 years ago (at the time of recruitment)
WS3 Part 1: The researchers intend to use data of all children and TYAs who died in NHS cancer treatment centres 2012-2018
WS3 Part 2: Children not identified as being at high risk of death

Study & Design

Study Type: Observational

Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
WS3 Part 1: <br>The presence (or not) of the following three high-intensity treatments in the final days of each child's life, measured using retrospective secondary analysis: intravenous chemotherapy <14 days from death; more than one emergency department visit; and more than one hospitalization or intensive care unit admission <30 days from death<br><br>WS3 Part 2: <br>The children's quality of death, measured using an appropriate scale to be determined through consultation with the study's Parent Advisory Group

Secondary Outcome Measures

Name	Time	Method
WS3:<br>1. Presence of mechanical ventilation (yes/no) <14 days from death<br>2. Place of death (hospital, home, hospice) measured using patient records