To the 128 families who completed the Pediatric Tracheostomy Quality of Life
Questionnaire, a tremendous thanks! We have some initial data that is mostly
descriptive. The overwhelming majority (>80%) of respondents noted that
their child received the tracheostomy between the ages of 0 to 2 years of
life. Roughly 30% of these children have subglottic stenosis, 30% have
tracheomalacia, and 15% have bilateral vocal cord paralysis.

In terms of the questionnaire itself, families have responded in a fairly
uniform fashion about the amount of stress and psychological burden they feel
and their child feels. The questionnaire also consistently reflects the
economic burden faced by those coping with a child with a tracheostomy. The
most divergent area of the questionnaire is the assessment of the child's
status; this makes sense when one thinks that some of the children are
certainly sicker than others. This is an area we will have to work on and
expand upon to more accurately characterize the group as a whole.

Based on the initial response we see a need to refine the questionnaire, so
that it can be truly representative of a unified and coherent voice. Our job
now is to look at the data and refine the questionnaire so that it can be
truly representative of a unified voice.

We are now in the process of completing the analysis. We hope to have a
final, expanded version ready by January. Thank you once again for your time
and effort. Please, as always, feel free to contact us with any questions
you may have.

Sincerely,
Christopher Hartnick MD
Department of Pediatric Otolaryngology
Children's Hospital Medical Center
Cincinnati, Ohio 45229
Email: harq4k@...

Cynthia Bissell
Email: cmbissell@...
www.tracheostomy.com