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Sheffield Children’s colleagues present at European Cystic Fibrosis Society (ECFS) Conference

Steve Jones at ECFS conference
30 June 2022

Congratulations to Dr Stephen Jones and Yasmin Rabey, who recently presented their research at the European Cystic Fibrosis Society (ECFS) Conference.

Their work demonstrated the importance of asking patients about their experiences of new medications beyond the physical impacts, and considering how our measures of wellbeing may become less specific as medical improvements continue.

Dr Jones, Principal Clinical Psychologist, said: “Within Cystic Fibrosis (CF) we have seen major developments with regards to new medications coming to market, especially as they are approved for younger people diagnosed with CF. While there are noted physiological benefits, the real-world psychological impact and quality of life improvement is harder to determine. Based on our data we saw that there wasn’t a lot of difference in psychological outcomes between those who were prescribed the new medications and those who were not which was in contrast to other reports of significant physical benefits. One area which did differ was that people taking the new medications reported increased “difficulties with putting on weight”, the suggestion being that young people diagnosed with CF often have found it difficult to put on weight and have therefore required high fat and calorie diets. After the new medications these same diets can lead to increased weight gain which requires changing the habits of a lifetime. It is therefore important for us to understand how we ask these questions as historically “difficulties putting on weight” has meant struggled to add weight, whereas now it could mean struggling to not put on additional weight. In addition young people rated the burden of treatment to have the largest impact on their lives.”

The 45th ECFS was held in Rotterdam in June 2022, with speakers invited from all over the world.

Dr Jones added: “I was able to discuss practice with colleagues in different parts of the UK and Europe and have some ideas of how to implement some changes into our practice in Sheffield Children’s Hospital which should improve our ability to maximise health and psychological outcomes. In addition, taking part in live workshops allowed me to meet colleagues from across Europe and we were invited to be part of European networks which share and collaborate practice for the people we serve. There is also an intangible benefit in feeling energised by the ideas and innovation discussed at such events.”

Thanks Stephen and Yasmin for sharing your research – we’re always striving to provide the best care to our patients and this is a wonderful part of it!

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