News

OA/TOF Quality of Life Questionnaire

Published: Tue, 19th May 2020, 02:27:00 PM

Thank you for a fabulous response!

UCL GOSH received a fantastic response, following an email sent to our members, and now have 35 volunteers for the study. The initial recruitment is now closed!  We will update you when they are ready to run the second, much larger, 'field testing' arm of the study in around 6 months time.

 

UCL Great Ormond Street Institute for Child Health are currently in the cognitive debriefing phase (see here) of a research project set to assess the quality of life in those born with OA/TOF and are asking for participants to take part in this important research.

 

 

 

Key aims of the study:

  1. Understand if different groups of OA patients have a different quality of life. This could help to counsel parents better when their child is born and throughout their treatment and childhood.
  2. Understand which OA-related issues children and their parents feel affect their quality of life most and therefore help to prioritise them.
  3. Give a way of measuring quality of life reliably in OA patients to help them know if new treatments and management help improve this.

 

Interviews to include the following information:

 

2-7 year olds

Due to their age, if your child is between 2-7 years old they will only ask you questions. Your child is not required to answer any questions and can be with you or not at the time of the interview. There are 17 questions in total and the whole process should take a maximum of one hour. Examples of questions include:

  • Is it difficult for your child to eat a full meal?
  • Does eating stress your child?
  • Does your child tire easily when playing games or sports?

 

8-17 year olds

They would like to perform two interviews, one with you, the parent/carer, and another with your child to understand individual viewpoints. Ideally these will be performed independently of each other and they will ask for you and your child to be in separate rooms at home if possible whilst these happen. They can be conducted one after the other. There are 24 questions in both the parent and child 8-17 year old questionnaires. Examples of questions for your child include:

  • Can you eat at the same pace as other children your age?
  • Is it complicated to explain to others what oesophageal atresia is?
  • Are you careful about what you wear because of your scar?

For further information on the 8-12 year old study click here and for 13-17 year old study click here.

 

As the survey was designed in Swedish, UCL GOSH are looking for 20 volunteers to ensure it has been translated appropriately to English and makes sense before using it more widely to try and answer the questions above.

 

They are looking for:

10 parents/guardians of OA+/-TOF patients aged 2-7 years old

10 parents/guardians of OA+/-TOF patients aged 8-17 AND their child (20 people), both of whom are willing to take part.

 More information can be found here.

Due to the coronavirus situation, they are planning to conduct video interviews by Microsoft Teams (similar to Skype, Zoom etc). This should take between 30 minutes to 1 hour per interview. If you are interested in taking part please get in contact with Natalie Durkin on n.durkin@ucl.ac.uk. 

 

This study has been endorsed by The Federation of Esophageal Atresia and Tracheo-Oesopgageal Fistula Support Groups (EAT)

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