To all those families who completed the final version of the Pediatric
Tracheostomy Quality of Life Questionnaire, I offer you a tremendous thanks.
We have finished with enrolling patients into this part of the study and
wanted to give all of you some sense of where we stand at the moment. First
of all, we have demonstrated that the questionnaire is valid to be used to
reflect the voice of families with children who have tracheostomies. This
is an important first step because it now gives an instrument, which is
accepted and carries some weight. It allows us to start to share with the
public at large, with insurance carriers, with whomever, the child's
experience of having a tracheostomy and the families' experiences of caring
for these children.
As an example, part of the questionnaire that you filled out represented an
accepted questionnaire that is widely used to assess the health and "quality
of life" for adults with regards to their own life. This questionnaire has
been given to so many adults across the US and the world that there are
standard inferences and statements that can be drawn from population
results. We know for example that the mean score for US adults is a 50 on a
score from 0 to 100 (0 is poor and 100 is good). Adults with heart disease
or diabetes generally score in the low 40's. The scores you as a population
have averaged have been in the mid 30's, which demonstrates in a striking
way just how difficult and stressful caring for these children can be. This
is important information.
What are the next steps? I see them as three fold. First, we would like to
be able to use the questionnaire to be able to evaluate families of children
with tracheostomies over a period of time after the tracheostomy has been
placed and to be able to help identify where more services or support might
be helpful. Second, we would like to be able to demonstrate just what an
effect removing the tracheostomy surgically has on the children and their
families. Finally we would begin to enquire in more detail into the
particular aspects of quality of life that affect these children. The first
two goals will be answered by long-term studies that we will be establishing
at Cincinnati Children's Hospital and the Massachusetts Eye and Ear
Infirmary. The third goal begins now.
I would like to ask those parents whose children are between the ages of two
and 18 (trached or decannulated) to complete a seven question survey. This
short questionnaire will allow us to begin to study one of the aspects of
having a tracheostomy that is mentioned quite often but about which little
is known: the voice.
Pediatric Voice Outcome Survey
<a HREF="http://www.tracheostomy.com/questions/voice.htm">AOL Click Here</a>
Again, I thank you for all your time and interest in these projects. Please
contact me with any questions regarding them that you might have.
Christopher Hartnick MD