Parental perceptions and morbidity: tracheostomy and Pierre Robin sequence

International Journal of Pediatric Otorhinolaryngology
Joshua DemkeAmelia Drake

Abstract

Evaluate parental perceptions associated with tracheostomy morbidity and quality of life in the management of Pierre Robin Sequence (PRS). Retrospective review/survey. 42 Pierre Robin patients were identified, records were reviewed and airway assessments evaluated relative to airway compromise. Twenty patients had undergone tracheostomy. Perceptions of quality of life/morbidity related to tracheostomy were assessed using parental surveys. 31/41 (76%) patients participated in the survey. 15/31 (48%) of survey participants required tracheostomy and were decannulated after a mean of 28 months. Of the patients who had undergone tracheostomy, 10/15 (67%) had isolated Pierre Robin (iPRS) and the remaining 5/15 (33%) had syndromes associated with Pierre-Robin (sPRS). 9/10 (90%) iPRS and 4/5 (80%) sPRS families' expectations were met regarding expected duration of tracheostomy although 3/5 (60%) sPRS, and 8/10 (80%) iPRS described the overall experience as difficult. Of the 2/15 patient's families who were dissatisfied 1 patient had iPRS and the other sPRS. 9/15 (60%) required multiple > or = 3) hospitalizations. 3/13 (23%) reported airway problems after decannulation and 2/15 (13%) remained tracheostomy dependent at the time of survey...Continue Reading

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