The Family Impact of Having a Child with a Tracheostomy. 2021

Romaine F Johnson, and Ashley Brown, and Rebecca Brooks
Department of Otolaryngology - Head and Neck Surgery, UT Southwestern Medical Center, Dallas, Texas, U.S.A.

Measure the quality of life among families with children with tracheostomies. We performed a prospective cross-sectional analysis of families with children with tracheostomies utilizing the PedQL Family Impact Module-a validated quality of life assessment. We determined if scores were impacted by demographics using regression analysis. We also compared the tracheostomy sample's scores to a previously published cohort of children with severe cerebral palsy and birth defects that required home nursing or nursing home placement using the student's t-test. We determined the effect size of the difference between the two groups using the Cohen's d test. Ninety-eight families are included in the study. The average (SD) age of tracheostomy placement was 1.6 (3.5) years. The population was 60% (59/98) male and 39% (38/98) Hispanic. The principal reason for tracheostomy was due to respiratory failure (76 out of 98; 78%). The mean (SD) total Family Impact score was 76 (19). The lowest domain score was daily activity problems, mean (SD) = 67 (30) followed by worry (mean = 69, SD = 24). The lowest question score was, "I worry about my child's future," mean (SD) = 52 (37). When compared to the comparison group of medically fragile children, the scores were statistically similar except for communication totals where tracheostomy patients reported superior scores (78.3 vs. 62.9, 95% CI, -26 to -4.8, P = .005, Cohen's d = -0.66). The presence of a tracheostomy is associated with QOL scores like other medically fragile children. 4 Laryngoscope, 131:911-915, 2021.

UI MeSH Term Description Entries
D007223 Infant A child between 1 and 23 months of age. Infants
D008297 Male Males
D011446 Prospective Studies Observation of a population for a sufficient number of persons over a sufficient number of years to generate incidence or mortality rates subsequent to the selection of the study group. Prospective Study,Studies, Prospective,Study, Prospective
D011788 Quality of Life A generic concept reflecting concern with the modification and enhancement of life attributes, e.g., physical, political, moral, social environment as well as health and disease. HRQOL,Health-Related Quality Of Life,Life Quality,Health Related Quality Of Life
D011795 Surveys and Questionnaires Collections of data obtained from voluntary subjects. The information usually takes the form of answers to questions, or suggestions. Community Survey,Nonrespondent,Questionnaire,Questionnaires,Respondent,Survey,Survey Method,Survey Methods,Surveys,Baseline Survey,Community Surveys,Methodology, Survey,Nonrespondents,Questionnaire Design,Randomized Response Technique,Repeated Rounds of Survey,Respondents,Survey Methodology,Baseline Surveys,Design, Questionnaire,Designs, Questionnaire,Methods, Survey,Questionnaire Designs,Questionnaires and Surveys,Randomized Response Techniques,Response Technique, Randomized,Response Techniques, Randomized,Survey, Baseline,Survey, Community,Surveys, Baseline,Surveys, Community,Techniques, Randomized Response
D003430 Cross-Sectional Studies Studies in which the presence or absence of disease or other health-related variables are determined in each member of the study population or in a representative sample at one particular time. This contrasts with LONGITUDINAL STUDIES which are followed over a period of time. Disease Frequency Surveys,Prevalence Studies,Analysis, Cross-Sectional,Cross Sectional Analysis,Cross-Sectional Survey,Surveys, Disease Frequency,Analyses, Cross Sectional,Analyses, Cross-Sectional,Analysis, Cross Sectional,Cross Sectional Analyses,Cross Sectional Studies,Cross Sectional Survey,Cross-Sectional Analyses,Cross-Sectional Analysis,Cross-Sectional Study,Cross-Sectional Surveys,Disease Frequency Survey,Prevalence Study,Studies, Cross-Sectional,Studies, Prevalence,Study, Cross-Sectional,Study, Prevalence,Survey, Cross-Sectional,Survey, Disease Frequency,Surveys, Cross-Sectional
D005190 Family A social group consisting of parents or parent substitutes and children. Family Life Cycles,Family Members,Family Life Cycle,Family Research,Filiation,Kinship Networks,Relatives,Families,Family Member,Kinship Network,Life Cycle, Family,Life Cycles, Family,Network, Kinship,Networks, Kinship,Research, Family
D005260 Female Females
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000203 Activities of Daily Living The performance of the basic activities of self care, such as dressing, ambulation, or eating. ADL,Chronic Limitation of Activity,Limitation of Activity, Chronic,Activities, Daily Living,Activity, Daily Living,Daily Living Activities,Daily Living Activity,Living Activities, Daily,Living Activity, Daily

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