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Outcomes of children in a persistent vegetative state
A I Fields1, D H Coble, M M Pollack
1Department of Critical Care Medicine, Children's National Medical Center, George Washington University School of Medicine, Washington, DC.
Insights
Long-term home care for children in a vegetative state following neurologic injury yielded poor outcomes, with high mortality and significant costs. Most children showed minimal awareness, despite intensive nursing and personnel support.
Area of Science:
- Pediatric Neurology
- Neuroscience
- Home Healthcare
Background:
- Neurologic injuries can result in a persistent vegetative state in children.
- Discharge to home care for these children presents unique challenges in terms of outcomes and resource utilization.
Purpose of the Study:
- To evaluate the long-term survival, functional status, and resource utilization of pediatric patients discharged home in a vegetative state.
- To assess caretaker satisfaction and perceived awareness in children receiving home-based care.
Main Methods:
- A case series design was employed, following twenty children diagnosed with a vegetative state.
- Home care interventions included professional nursing services.
- Outcomes were assessed via mailed questionnaires and telephone follow-up, focusing on survival, mental and functional status, costs, and personnel requirements.
Main Results:
- Over a 4.5-year follow-up, 40% of children died, while survivors remained totally dependent.
- Twelve of thirteen caretakers reported minimal awareness (e.g., voice recognition) in their children.
- Annual care costs averaged over $90,000 per patient, requiring 10-12 hours of daily nursing care.
Conclusions:
- The long-term prognosis for children discharged home in a vegetative state is poor, characterized by high mortality and limited functional improvement.
- Despite intensive home care, significant resource utilization and financial burden are associated with managing these complex pediatric cases.
Objective:
To determine the long-term outcomes and resource utilization of children discharged home in a vegetative state following neurologic injury.
Design:
A case series.
Setting:
Patients' homes.
Patients:
Twenty children discharged from acute and chronic care hospitals with a diagnosis and discharge examination consistent with the vegetative state.
Interventions:
Home care delivered, in part, by registered nurses.
Measurements:
Assessed outcomes included survival/death, mental status, functional status, costs, and personnel requirements and technologies used for home care. A mailed questionnaire and telephone follow-up were used to assess patients awareness and caretaker satisfaction with home care.
Results:
Children were followed in the vegetative state for 4.5 +/- 2.9 yrs. Six children died at home and two children died after rehospitalization. Twelve children survived at home, all for > 1 yr; eight children survived for > 3 yrs. Most patients were stable after the first year of home care. Twelve of 13 caretakers felt their child had some minimal awareness (e.g., voice recognition), although all children remained totally dependent. Costs of care averaged > $90,000/yr per patient. Care included 10 to 12 hrs/day of professional nursing care, and extensive time investments by other personnel, including public school personnel.
Conclusions:
The long-term outcome for children discharged from the hospital in a persistent vegetative state was poor. Forty percent of the patients died and, at best, children showed only minimal awareness after an average of 4.5 yrs. Care costs were > $90,000/yr per patient.