Parental perception of functional status following tracheostomy in infancy: A single center study

Objective: To examine the functional outcomes of children who underwent a tracheostomy in the initial hospitalization after birth and to determine their correlates. Study design: We administered the validated 43-item Functional Status-II (FS-II) questionnaire by Stein and Jessop over the telephone to caregivers of surviving children. The FS-II items generated a total score, age-specific: (1) total; (2) general health (GH); and (3) responsiveness, activity, or interpersonal functioning (IPF) scores in specific age group categories. Results: FS-II was administered to 51/62 (82.2%) survivors at a median (range) age of 5 (1-10) years; 27% children were on the ventilator and 43% required devices. About 40% of children had a median of 1 (1-4) hospitalization in the previous 6 months. Scores were >2 SD below means in 55%, 24%, and 55% cases for age-specific T, GH, and R/A/IPF scores respectively. The T and R/A/IPF scales were significantly higher in those with private, rather than public, maternal insurance, as were T and R/A/IPF scores for children ≥4 years, compared with younger children. On regression analysis, FS-II T, GH, and R/A/IPF scores were independently associated with maternal private insurance (P =.02). R/A/IPF scores were also significantly associated with corrected age at FS-II administration. Conclusions: One-third of surviving children who underwent tracheostomy during their initial hospitalization remained technology-dependent. The parental FS-II questionnaires revealed low R/A/IPF scores, especially at younger ages and in those with maternal public insurance. Further research on family-level interventions to improve functional outcomes in this population is warranted.