Living with cerebral palsy and tube feeding: A population-based follow-up study

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 CE initiation of TF improved the quality of life for both the child and family in 90% despite frequent minor complications.