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Long-term percutaneous endoscopic gastrostomy feeding in young adults with multiple disabilities
1Department of Rehabilitation Medicine, Concord Hospital, Sydney, New South Wales 2139, Australia.
Insights
Percutaneous endoscopic gastrostomy (PEG) feeding in young adults with profound multiple disabilities offers extended survival but little improvement in quality of life. Complications are common, requiring significant nursing care.
Area of Science:
- Neurology
- Gastroenterology
- Disability Studies
Background:
- Young adults with profound multiple disabilities often face challenges with nutrition and respiratory health.
- Percutaneous endoscopic gastrostomy (PEG) feeding is a common intervention for these individuals.
Purpose of the Study:
- To evaluate the outcomes of initiating PEG feeding in young individuals with severe intellectual disability and quadriplegia.
- To assess the long-term impact of PEG feeding on quality of life and medical stability.
Main Methods:
- A retrospective audit of 40 adults (15-40 years) with lifelong intellectual disability and quadriplegia who received PEG feeding between 1990-2008.
- Data collected on reasons for PEG insertion, complications, survival, cognitive function, medication use, and nursing interventions.
Main Results:
- Reasons for PEG feeding included undernutrition and recurrent aspiration. Patients lived an average of 8.5 years with PEG feeding (up to 18 years).
- All patients experienced PEG-related complications. No improvements in cognition or medication reduction were observed. Frequent nursing interventions were required.
- Ten deaths occurred during the review period, primarily due to pneumonia secondary to neurological deterioration.
Conclusions:
- PEG feeding can prolong life for young adults with profound multiple disabilities.
- Despite extended survival, PEG feeding offers minimal gains in quality of life and is associated with significant complications and care needs.
Aim:
To study the outcomes from initiation of percutaneous endoscopic gastrostomy (PEG) feeding in young people with profound multiple disabilities.
Methods:
Observations were made on 40 adults with lifelong intellectual disability (mental retardation) and quadriplegia, in whom PEG feeding was initiated during 1990-2008. There were 20 men and 20 women aged 15-40 years at the time of the audit, living in settings with 24 h registered nurse staffing.
Results:
Undernutrition and recurrent aspiration with frequent infections were cited as reasons for PEG feeding. The positive outcomes were that some were said to be more alert for a time following the procedure; and these young adults lived with PEG feeding for an average of 8.5 years, some up to 18 years. In that time, however, they all experienced complications of the PEG insertion, and of the PEG feeding process. There were no measurable improvements in cognition. There were no reductions in prescription of medications. They all required frequent daily interventions by nurses to maintain medical stability. Ten people died during this review period, from continued deterioration in neurological status, with pneumonia cited as the terminal event.
Conclusions:
Unlike other people with neurological deterioration, young adults with lifelong multiple disabilities may live for many years with PEG feeding. There is little gain in quality of life.
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