Characteristics and rehabilitation needs of children with severe form of genetic conditions in long-term care facility in Abu Dhabi

Abstract

Background

Children with severe genetic conditions often need long-term care and rehabilitation. The purpose of this study was to characterize the medical and rehabilitation needs of children with severe genetic conditions living in a long-term care (LTC) facility in Abu Dhabi, United Arab Emirates (UAE).

Methods

A cross-sectional, retrospective chart review of all children with severe genetic conditions admitted to an LTC facility between September and November 2024 was conducted. Data were extracted from medical records, including age, primary diagnosis, comorbidities, respiratory support needs, level of consciousness, medication list, and rehabilitation services.

Results

A total of 10 children were included in the study. The diagnoses varied from common to very rare genetic conditions. All children exhibited global developmental delay, abnormal muscle tone, and complete functional dependence. All children had chronic respiratory failure requiring long-term mechanical ventilation, highlighting the severity of their conditions. Seven children had scoliosis with multiple contractures. Routine and as-needed medications with nursing, dietary, physical, occupational, and respiratory therapies were offered for all children.

Conclusion

Children with severe genetic conditions in an LTC are medically complex and require multidisciplinary care and rehabilitation. This study highlights the need for interventions to improve the quality of life of these vulnerable children.