SaFE: Swallowing, feeding and eating in children born with OA/TOF

  • Research type

    Research Study

  • Full title

    A mixed methods exploration of early feeding in children born with oesophageal atresia/trache-oesophageal fistula.

  • IRAS ID

    262966

  • Contact name

    Alexandra Stewart

  • Contact email

    alex.stewart@gosh.nhs.uk

  • Sponsor organisation

    Great Ormond Street Hospital for Children NHS Foundation Trust

  • Clinicaltrials.gov Identifier

    NCT04183621

  • Duration of Study in the UK

    4 years, 2 months, 24 days

  • Research summary

    How does oesophageal atresia/trache-oesophageal fistula affect feeding and swallowing in the first year of life?

    Approximately 150 babies a year are born with oesophageal atresia and/or trache-oesophageal atresia. Oesophageal atresia occurs when the oesophagus (food pipe) fails to join up during early foetal development. Trache-oesophageal fistula describes an abnormal connection that forms between the oesophagus and trachea (wind pipe). When the baby feeds, milk cannot pass into the stomach but can pass into the lungs.

    Surgery is needed within the first few days of life and is extremely successful, with 90-95% of babies surviving. However, approximately 50-80% of babies will have ongoing feeding or swallowing difficulties resulting in choking, chest infections and pneumonia. They can also lead to food refusal, distress at mealtimes and parental anxiety.

    Currently we have limited understanding of:
    • the exact nature of the feeding and swallowing difficulties
    • the risk factors for developing difficulties
    • the impact on parents.

    This study will address these issues through two complimentary projects:
    Project 1: A study of swallow physiology
    Babies with oesophageal atresia and/or trache-oesophageal fistula who have surgery at Great Ormond Street Hospital will be invited to have a detailed swallow assessment using videofluoroscopy (video x-ray) and high resolution impedance manometry (a pressure monitor) at 2-4 months of age and at 8-10 months of age. Results will be compared to parent report of feeding at 1 year old.

    Project 2: A study of the impact on parental well-being
    This study will be carried out in conjunction with the ‘TOFS’ support group. A Facebook page will be used to carry out an online forum. Parents of any child who has had TOF/OA will be invited to share their experiences of establishing feeding. This information will be used to develop a questionnaire to look at how wide-ranging these experiences are.

  • REC name

    London - Central Research Ethics Committee

  • REC reference

    20/LO/0098

  • Date of REC Opinion

    6 Feb 2020

  • REC opinion

    Favourable Opinion