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[Development of care activities for children with sickle cell disease at the Robert-Debré Hospital (Paris), between
C Fournier1, M Benkerrou, E Vilmer
1Service de santé publique, hôpital Robert-Debré, Paris, France.
Insights
Pediatric sickle cell disease (SCD) care has intensified, with more hospitalizations and complications. This increase is driven by greater patient numbers, higher emergency admissions, and patient aging, leading to increased healthcare team workload.
Area of Science:
- Pediatric Hematology
- Public Health
Background:
- Physicians observed a rise in sickle cell disease (SCD) care activity at Robert-Debré hospital.
- This perceived increase prompted an investigation into the evolution and causes of SCD care intensity.
Purpose of the Study:
- To describe the changes in pediatric sickle cell disease care over time.
- To investigate the factors contributing to any observed increase in care intensity.
Main Methods:
- Retrospective study comparing patient groups from 1992 and 1996.
- Analysis of patient phenotype, hospitalization frequency, length of stay, and complication types.
- Review of hospital information systems and individual patient records (medical, nursing, social).
Main Results:
- Significant increase in hospitalizations and workload for healthcare teams managing sickle cell disease.
- Contributing factors include larger patient recruitment, higher emergency admission rates, and increased complication rates.
- Patient aging and increased morphine prescription rates indicate a growing intensity of care per hospitalization.
Conclusions:
- Pediatric sickle cell disease care activity has demonstrably increased.
- The rise in activity is multifactorial, involving patient demographics, disease progression, and treatment intensity.
- Healthcare teams face a growing workload necessitating adaptive strategies for SCD patient management.
Aim:
In recent years, physicians at the Robert-Debré pediatric hospital in Paris perceived an increase in activity linked to sickle cell disease care. Our study had two objectives: first, to describe the evolution of care for children with sickle cell disease in the hospital, then, if a heavier intensity of care was shown, to try to investigate its causes.
Methods And Patients:
We conducted a retrospective study using two strategies. On one hand, we compared the group of children followed up in 1992 with the group of children followed up in 1996 for their phenotype and hospitalizations (frequency, length of stay and type of complications), on the other hand, we described the course of complications and hospitalizations in the cohort of children followed from 1992 to 1996. Children were spotted through lists established by the 'Center for sickle cell disease', which coordinates the follow-up of all sickle cell patients in the hospital. Data came from the hospital's information system, and from all (medical, nursing, and social) individual records.
Results:
The major result of this study shows an increasing activity linked to sickle cell disease care in this hospital: multiplication of hospitalizations and increasing work load for the healthcare teams. This situation is due to a larger recruitment, a higher emergency hospitalization rate, and an increasing rate of complications among the sickle cell children. The children's ageing is part of the explanation. The work load for the healthcare team linked to each hospitalization has also grown, as shown by an increasing rate of morphine prescription.