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Living with cerebral palsy and tube feeding: A population-based follow-up study
S W Smith1, C Camfield, P Camfield
1Dalhousie University Medical School and IWK-Grace Health Centre, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
Insights
Surgically placed feeding tubes (TF) significantly improved quality of life for children with severe cerebral palsy (CP) and their families. Survival rates after tube feeding were high, with 75% of children surviving after 7 years.
Area of Science:
- Pediatric Gastroenterology
- Neurology
- Quality of Life Studies
Background:
- Children with severe cerebral palsy (CP) often experience feeding difficulties.
- Surgical interventions like gastrostomy or jejunostomy are used to provide nutritional support through tube feeding (TF).
- The impact of TF on the well-being of children with CP and their families, as well as survival rates, requires thorough investigation.
Purpose of the Study:
- To evaluate the impact of surgically placed feeding tubes on children with severe CP.
- To assess the effect of tube feeding on the quality of life for both the child and their family.
- To determine the survival rates of children with severe CP following the initiation of tube feeding.
Main Methods:
- A cohort of children diagnosed with CP who underwent gastrostomy or jejunostomy between 1980 and 1998 in Nova Scotia was identified.
- Caretakers of children with recent TF initiation were interviewed using a semi-structured approach.
- Survival data were obtained from vital statistics, and survival curves were generated using data from 1980-1989 and more recent cases.
Main Results:
- Out of 61 identified children, 16 had died.
- Interviews with 40 of 45 eligible families revealed that 90% were satisfied with the impact of TF on their child and family life.
- Reported negative impacts were primarily linked to increased stress associated with feeding.
Conclusions:
- Initiation of tube feeding in children with severe cerebral palsy leads to a 90% improvement in quality of life for both the child and family.
- Despite common minor complications, tube feeding is associated with positive outcomes.
- Survival rates after gastrostomy and/or jejunostomy were 83% at 2 years and 75% at 7 years.
Objectives:
To assess the impact of surgically placed feeding tubes on children with severe cerebral palsy (CP) and their families and to determine the survival of these children after initiation of tube feeding (TF).
Methods:
Virtually all children from Nova Scotia who had gastrostomy or jejunostomy procedures between the years 1980 and 1998 and who had been diagnosed with CP were identified. Caretakers of those children who had TF initiated in the last 8 years were evaluated by using a semi-structured interview. Names of children who had not had recent follow-up visits were submitted to the provincial Vital Statistics office to determine whether they had died. Data from patients who were tube-fed between 1980 and 1989 were then used in combination with data from the more recent cases to create a survival curve.
Results:
A total of 61 children were identified; 16 had died. Forty of 45 eligible families were interviewed; 90% were pleased with the effect of TF on their child and family life. Negative reports were associated with increased stress related to feeding. Survival rates after gastrostomy and/or jejunostomy were 83% after 2 years and 75% after 7 years.
Conclusions:
In children with severe CF, initiation of TF improved the quality of life for both the child and family in 90% despite frequent minor complications.