Initiating Pediatric Palliative Care in ACT Group 4

NCT06273267 | Completed

• 1 other identifier: APHP231232
• Study Type: observational
• Target: 126
• Locations: 1 country
• Sites: 1

Brief Summary

Due to the wide range of diagnoses encountered in pediatric palliative care, the Association for Children's Palliative Care (ACT) and the Royal College of Paediatrics and Child Health (RCPCH) have developed a classification of life-limiting illnesses, based on support models. This classification includes four groups. ACT 4 category is made up of children with a serious incurable non-progressive neurological disease (for example: anoxic ischemia, cerebral palsy, traumatic or infectious brain injuries). Although data relating to specific ACT groups are scarce, experience from clinical practice suggests that the needs and use of Pediatric palliative care resources are different across the four categories. The specific history of ACT-4 patients suggests that pediatric palliative care may be required early on in the history of the disease but effective intervention varies greatly from one patient to another. Tthis study aims to better understand the optimal timing for introducing a PPC team into the care pathway for these children. The study also aims to describe the care trajectory over the first year of PPC intervention.

Conditions

Encephalopathy; Cerebral Palsy; Cerebral Malformation; Traumatic Head Injury

Keywords

Serious incurable non-progressive neurological disease; Pediatric palliative care

Outcome Measures

Primary Outcomes (1)

• Description of first pediatric palliative care intervention

  The first pediatric palliative care team intervention will be listed for each patient (symptom management, multidisciplinary ethical meeting, care coordination, or team and family support). Collection of data from the patient's medical file. The data collected concerns the initial intervention.

  12 months

Secondary Outcomes (2)

• Description of the patient situation

  12 months

• Timing of pediatric palliative care intervention

  12 months

Study Arms (1)

Patients

AP-HP patients followed by the pediatric palliative care teams of Ile de France (metropolitan area of Paris) between January 2020 and December 2022 and suffering from a serious non-progressive neurological disease.

Other: Collection of data from the patient's medical file

Interventions

Collection of data from the patient's medical file OTHER

Collection of data from the patient's medical file. The data collected concerns the first year of follow-up (from the initial PPC intervention to one year to date post-intervention).

Patients

Eligibility Criteria

• Age: Up to 25 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

AP-HP (Assistance Publique - Hôpitaux de Paris) patients followed by the pediatric palliative care teams of the greater metropolitan area of Paris "Ile de France" (Robert-Debré hospital, Necker hospital or Paliped-Île-de-France Regional Pediatric Palliative Care Resource Team) between January 2020 and December 2022 and suffering from a serious non-progressive neurological disease. Robert Debré et Necker Hospitals are tertiary care hospitals. Paliped is a community based service for PPC.

You may qualify if:

• Patients aged 0 to 25
• Follow-ups at APHP
• Supported by a palliative care team from Ile de France (Robert-Debré hospital, Necker hospital or Paliped-Île-de-France Regional Pediatric Palliative Care Resource Team) between January 2020 and December 2022
• Suffering from a serious non-progressive neurological disease (ACT-4)
• Information and absence of opposition from the holders of parental authority of the minor patient and the guardian or curator of the adult patient if he is under guardianship/curatorship;

You may not qualify if:

• Other ACT category (1, 2, 3 or 5) of the classification of diseases by the Association for Children's Palliative Care (ACT) and the Royal College of Paediatrics and Child Health (RCPCH) during treatment
• Patients for whom there was no pediatric palliative care intervention
• Patients in palliative care without follow-up at the APHP

Sponsors & Collaborators

• Assistance Publique - Hôpitaux de Paris: lead
• URC-CIC Paris Descartes Necker Cochin: collaborator

Study Sites (1)

Hôpital Necker-Enfants Malades

Paris, 75015, France

Location

Related Publications (8)

• Namisango E, Bristowe K, Allsop MJ, Murtagh FEM, Abas M, Higginson IJ, Downing J, Harding R. Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes. Patient. 2019 Feb;12(1):15-55. doi: 10.1007/s40271-018-0333-5.

  PMID: 30361884 BACKGROUND

• Bender HU, Riester MB, Borasio GD, Fuhrer M. "Let's Bring Her Home First." Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care. J Pain Symptom Manage. 2017 Aug;54(2):159-166. doi: 10.1016/j.jpainsymman.2017.04.006. Epub 2017 Jun 8.

  PMID: 28602938 BACKGROUND

• DeCourcey DD, Silverman M, Oladunjoye A, Balkin EM, Wolfe J. Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions. J Pediatr. 2018 Feb;193:196-203.e2. doi: 10.1016/j.jpeds.2017.09.078. Epub 2017 Nov 22.

  PMID: 29174080 BACKGROUND

• Good PD, Cavenagh J, Ravenscroft PJ. Survival after enrollment in an Australian palliative care program. J Pain Symptom Manage. 2004 Apr;27(4):310-5. doi: 10.1016/j.jpainsymman.2003.12.011.

  PMID: 15050658 BACKGROUND

• Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, Friebert SE, Hays RM, Dussel V, Wolfe J. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics. 2011 Jun;127(6):1094-101. doi: 10.1542/peds.2010-3225. Epub 2011 May 9.

  PMID: 21555495 BACKGROUND

• Siden H, Chavoshi N, Harvey B, Parker A, Miller T. Characteristics of a pediatric hospice palliative care program over 15 years. Pediatrics. 2014 Sep;134(3):e765-72. doi: 10.1542/peds.2014-0381.

  PMID: 25157003 BACKGROUND

• Mack JW, Wolfe J. Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr Opin Pediatr. 2006 Feb;18(1):10-4. doi: 10.1097/01.mop.0000193266.86129.47.

  PMID: 16470155 BACKGROUND

• Himmelmann K, Sundh V. Survival with cerebral palsy over five decades in western Sweden. Dev Med Child Neurol. 2015 Aug;57(8):762-7. doi: 10.1111/dmcn.12718. Epub 2015 Feb 19.

  PMID: 25694102 BACKGROUND

MeSH Terms

Conditions

Brain Diseases; Cerebral Palsy

Condition Hierarchy (Ancestors)

Central Nervous System Diseases; Nervous System Diseases; Brain Damage, Chronic

Study Officials

• Ashley RIDLEY, M.D.

  Assistance Publique - Hôpitaux de Paris

  PRINCIPAL INVESTIGATOR

• Hélène GEFFROY, Resident

  Assistance Publique - Hôpitaux de Paris

  STUDY DIRECTOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 31, 2024
• First Posted: February 22, 2024
• Study Start: December 22, 2023
• Primary Completion: July 22, 2024
• Study Completion: July 22, 2024
• Last Updated: September 12, 2025

Record last verified: 2025-09

Data Sharing

• IPD Sharing: Will not share

Locations

FR (1)