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Enteral tube feeding in adults with cystic fibrosis; patient choice and impact on long term outcomes

  • Researchers

    White H, Morton AM, Conway SP, Peckham DG.

  • Place of research

    St. James's Hospital, Leeds & Leeds Metropolitan University, Leeds, UK

  • Publication

    Journal of Cystic Fibrosis / June 2013

  • Subjects

    , , ,

  • Does the decision to accept overnight tube feeding have long term benefits on weight and health status in adults with cystic fibrosis?

  • Why is this important?

    Patients with cystic fibrosis can struggle to maintain their weight. The decision to start tube feeding is difficult because patients are already living with a huge treatment burden, and that would increase it further. This means that patients often delay making that decision. Understanding the benefits and drawbacks are important in allowing patients to make more informed choices about feeding.

  • What did you do?

    Between 2004 and 2008 we identified 23 patients with cystic fibrosis who moved into the defined category of ‘underweight’, and who met the UK criteria to start overnight tube feeding. We then compared those patients who chose to have an overnight tube feed (through a nasal tube (NGT) or a gastrostomy (PEG)) with those who declined tube feeding. We examined what happened to weight, lung function and the number of intravenous antibiotic treatment days over the next 3 years in both groups.

  • What did you find?

    Those who chose enteral tube feeding gained an average of 7.3 kg at 1 year and 9.0 kg (20% of their initial body weight) at 3 years. Their lung function remained completely stable over 3 years, but they still required increasing intravenous antibiotic treatment. In patients who declined, they did not gain weight and their average lung function decreased from 56% to 45%.

  • What does this mean and reasons for caution?

    Improving nutrition with overnight tube feeding helps to stabilise lung function and has benefits even when initial weight and lung function are poor. Tube feeding was shown to be safe, but caution is needed as cystic fibrosis-related diabetes increased in the tube feeding group (53% of patients at 3 years). It’s important to note that this was a small observational study, and so larger studies would be important to fully assess the effect of overnight tube feeding.

  • What's next?

    We want to investigate whether weight gain occurs in a healthy way in terms of the balance of muscle and fat gained.