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Care Intensity and Palliative Care in Chronically Critically Ill Infants
Rachel S Deming1, Emanuele Mazzola1, Jeanne MacDonald2
1Department of Psychosocial Oncology and Palliative Care (R.S.D., E.M., L.B., J.W.), Dana-Farber Cancer Institute, Boston, MA, USA.
Insights
Chronically critically ill infants discharged from NICUs require intensive care and support. While most receive primary palliative care in the NICU, access to specialty palliative care remains limited long-term.
Area of Science:
- Neonatal Intensive Care Unit (NICU) care
- Pediatric critical care
- Palliative care research
Background:
- Increasing survival of chronically critically ill (CCI) infants from NICUs presents new challenges.
- Limited understanding exists regarding the care intensity and palliative care needs of these infants post-discharge.
- Families of CCI infants require comprehensive support during and after NICU stays.
Purpose of the Study:
- To describe the care intensity of CCI infants at NICU discharge and one year post-discharge.
- To evaluate the primary and specialty palliative care services received by these infants and their families.
- To identify gaps in palliative care access for medically complex infants.
Main Methods:
- Retrospective chart abstraction of CCI infants discharged from three academic centers (2016-2019).
- Inclusion criteria: discharged at ≥42 weeks corrected gestational age with medical technology.
- Data collected: demographics, care intensity, medical technologies, medications, provider involvement, and palliative care consultations at discharge and one year.
Main Results:
- 273 infants studied; median NICU stay 45 days; common diagnoses: congenital/genetic conditions (68.5%).
- At discharge, 75.1% had feeding tubes, 24.5% tracheostomies; median 6 medications and 8 providers.
- At one year, 91.4% still used technology; 19.8% received NICU palliative care consult, only 13.2% followed by palliative care at one year.
Conclusions:
- CCI infants exhibit high medical complexity at discharge and one year, requiring intensive interventions.
- While NICU-based primary palliative care is common, access to specialty palliative care is insufficient short- and long-term.
- Improved access to specialized palliative care is crucial for improving outcomes for CCI infants and their families.
Context:
Increasingly, chronically critically ill (CCI) infants survive to discharge from Neonatal Intensive Care Units (NICUs). Little is known about their care intensity and the primary and specialty palliative care families receive at and following discharge.
Objectives:
To describe care intensity and primary and specialty palliative care received by NICU CCI infants at discharge and one year.
Methods:
Chart abstraction of CCI infants at three academic centers discharged at ≥42 weeks corrected gestational age with medical technology between 2016 and 2019, including demographics, care intensity, and primary and specialty palliative care received at discharge and one year.
Results:
Among 273 infants, NICU median stays were 45 [IQR 23-92] days. Primary diagnoses included congenital and/or genetic conditions (68.5%), prematurity (28.2%), and birth events (3.3%). At discharge, surgical feeding tubes (75.1%) and tracheostomies (24.5%) were the most common technologies. Infants received a median of 6 [IQR 4-9] medications and were followed by a median of 8 [IQR 7-9] providers. At one year, 91.4% continued with one or more technologies, similar numbers of medications and specialty providers. In the NICU, nearly all families had social work involvement, 78.8% had chaplaincy and 53.8% child life; 19.8% received specialty palliative care consultation. At one year, only 13.2% were followed by palliative care.
Conclusions:
CCI infants receive intensive medical care including multiple medical technologies, medications, and specialty follow up at discharge and remain complex at one year of life. Most receive primary interprofessional palliative care in the NICU, however these infants and their families may have limited access to specialty palliative care in the short- and long-term.
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