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Tracheostomy Questionnaire

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  • Cynthia Bissell
    Greetings, To all those families who completed the final version of the Pediatric Tracheostomy Quality of Life Questionnaire, I offer you a tremendous thanks.
    Message 1 of 1 , May 11, 2001
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      Greetings,

      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
      http://www.tracheostomy.com/questions/voice.htm

      <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
      harq4k@...
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