Relationship of mental well-being and adherence in Cystic Fibrosis

  • Research type

    Research Study

  • Full title

    A cross-sectional, single-centre study describing the prevalence of mental ill health and emotional well-being amongst people with Cystic Fibrosis using the Core Mental Health Data Set



  • Contact name

    Robert D Sandler

  • Contact email

  • Sponsor organisation

    Sheffield Teaching Hospitals NHS Foundation Trust

  • Duration of Study in the UK

    0 years, 4 months, 1 days

  • Research summary

    We aim to collect information about mental well-being from people with cystic fibrosis, a long-term medical condition. We will use this information to understand the mental well-being of these people and look at how this may be related to their adherence to inhaled medicine.

    Lay summary of study results: 211 people with Cystic Fibrosis (CF), who are looked after at the Sheffield Adult CF Centre were invited to complete a series of digital questionnaires about their mental health. 64 people responded. We were able to access anonymised demographic data for both responders and non-responders from the hospital electronic medical records. Compared to the 147 who did not respond, the 64 responders were, on average, slightly older (34 vs 31 years old) and more of them were female (58% vs 45%). We cannot be sure if this is just coincidental, or reflects a difference in the way that age and gender may influence how willing people are to respond to online questionnaires.

    We aimed to find out how many people with CF may have problems with their mental health and also see if this seemed to relate to how much of their inhaled medicine they were taking, which we call “adherence”. All people who had adherence data were separated into one of four groups, where group 1 represented people with the lowest adherence (typically <25%) and group 4 had the highest adherence (typically >75%). Adherence of <25% means that people in this group took less than a quarter of the inhaled medicines they were prescribed.

    Of the 64 people who responded, approximately 30-50% may have mental ill health, such as anxiety or depression, based on the questionnaires used here. There seemed to be a higher proportion of people with mental ill health in the lowest adherence group (group 1), compared to the other groups, but there was very little difference between those in groups 2-4 themselves.

    We had originally planned to use the results of this study to describe the mental health of the whole group of people with CF in Sheffield, however as only around 30% of the total number of people we look after responded, we cannot be sure that the data we collected in this study is representative of all people with CF in Sheffield. We certainly do not expect up to half of the total group of people with CF in Sheffield to have mental ill health. It is possible that those who had mental ill health were more likely to complete the questionnaire and those who had no problem with their mental health may have not completed it, which is why we got the results we did. Either way, we need to explore this further in order to achieve our aims..

    Therefore, we have designed a new study using two of the same mental health questionnaires, but this time the data is collected from the hospital medical records. Every person with CF should complete these two questionnaires each year, when they come to clinic. This way, we hope to have information from almost everyone in the whole centre, so we can be more confident that the results truly reflect the whole population.

  • REC name

    London - City & East Research Ethics Committee

  • REC reference


  • Date of REC Opinion

    5 Dec 2022

  • REC opinion

    Favourable Opinion