title: Effect on families and caregivers of caring for a child with laryngomalacia.
abstract: We used a retrospective chart review and telephone interviews using a standard format to 1) measure the outcome and psychosocial costs of caring for a child with upper airway obstruction due to laryngomalacia and 2) develop an epidemiologic instrument that measures the impact on the lives of families who have a child with laryngomalacia. Forty-four patients had laryngomalacia documented by endoscopy between 1993 and 1997. Complete follow-up information through 1998 was available on 26 patients. Of the 44 patients, 37 were managed expectantly and 7 (16%) required surgical intervention. Polysomnograms were obtained on 11 before neonatal discharge. Twelve patients wore an apnea monitor for at least 1 month. The quality of life analysis found that the majority of caregivers were not substantially affected by caring for the stridorous child. Loss of sleep and heightened anxiety were commonly reported by these caregivers. Younger parents or parents with fewer than 3 other children were more affected by caring for a child with laryngomalacia. There was no substantial loss of workdays, increase in doctor visits, or difficulty in obtaining day care. Caring for a child with laryngomalacia results in minor disruption of a family's lifestyle.
authors.affiliation: Department of Otolaryngology-Head and Neck Surgery, Oregon Health Sciences University, Portland 97201-3096, USA.
authors.forename: H A
authors.initials: HA
authors.lastname: Milczuk
authors.forename: S M
authors.initials: SM
authors.lastname: Johnson
mesh_terms: D001049:Apnea / Q000209:etiology; D002654:Child Care / Q000523:psychology*; D005192:Family Health; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007407:Interviews as Topic; D007818:Laryngeal Diseases / Q000150:complications / Q000523:psychology* / Q000628:therapy; D010290:Parents / Q000523:psychology; D011788:Quality of Life; D012135:Respiratory Sounds / Q000209:etiology; D012189:Retrospective Studies