initiating pediatric palliative care in act group 4

Conditions: Encephalopathy; Cerebral Palsy; Cerebral Malformation; Traumatic Head Injury

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.

the act 4 group 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 question of when to initiate palliative care with curative pediatric care frequently arises for specialists in pediatrics and palliative medicine. in the act-4 group, where the pathologies are by definition non-progressive, the initial timing and mode of intervention of palliative care are less clear. the main reasons encountered in clinical practice are: symptomatic and therapeutic assessment, goals of care discussion, and implementing a care plan. two main modes of intervention have been identified for hospital based teams (consultations and multidisciplinary meetings) and will be confirmed by extending the study to community care. the reasons and methods of intervention will be explored in our study. the specific history of act-4 patients suggests that these patients may present pediatric palliative care needs early on, but effective intervention varies greatly from one patient to another. this 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.

Eligibility criteria:
inclusion criteria: * 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; exclusion criteria: * 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

Keywords: serious incurable non-progressive neurological disease pediatric palliative care