REF2021 04Z_ICS_C: Developing tools to support the dietary practices, health, and wellbeing of people with cystic fibrosis

    Impact: Health impacts

    Description of impact

    We developed the first evidenced based tools and interventions underpinned by psychological theory for people living with Cystic Fibrosis (PwCF). These address the problems of non-adherence to demanding treatment regimens and engagement in health risk behaviours (HRB), and significant problems with eating.

    These tools increased knowledge and confidence in healthcare professionals and thus influenced healthcare practices. One tool was aimed at patients to address the challenges of adherence and health risk behaviours and another addressed problematic eating behaviours. Both resulted in a greater understanding of how to manage their condition. Combined with the influence on healthcare practices, PwCF had an improvement in the level of care they received.

    Details of Impact
    CF care presents a difficult challenge for clinicians, and patients, and resources are typically focused on managing physical symptoms. Clinicians report having little psychology experience and knowledge, and clinical psychologists have limited resources which are focused on serious mental health issues. The research team collaborated with HCPs to develop interventions based on our research for use by the wider clinical team, with a view to improving psychological support in HRB and eating behaviours.

    We created three tools:

    Encouraging discussions regarding HRB: A toolkit to identify patients at higher risk of non-adherence and HRB

    A Guide to Mindful Eating for PwCF

    Mindful Eating Practices for PwCF (CFMEP)

    A toolkit to identify patients at higher risk of non-adherence and HRB

    We identified that, in the UK, there are no current national standardised practices for embedding HRB information into CF care; this is undertaken retrospectively when individuals flag that they are already engaging in HRB. We developed a psychological screening tool to be completed by patients with an accompanying guide for HCP, which aimed to identify PwCF who were at risk of engaging with HRB, including non-adherence, as a means of coping with their CF.

    The screening tool was introduced to CF Specialist Nurses at a UK national CPD training day, promoting discussion and debate and raising awareness around the increasing prevalence of HRB. The screening tool was evaluated as being user friendly and useful addition to clinical practice for detecting patients at risk of engaging in HRB.

    The screening tool was piloted with a small number of patients and gained a positive response (S01); of the 8 participants who responded to the questionnaire, 6 strongly agreed that the tool would be relevant to them. Everyone agreed that the format was fit for purpose, user friendly and would encourage discussion with clinicians improving patient experience and clinical practice, for example:

    I think it looks really straightforward to understand and would be really useful. Our clinic doesn't use anything like this, and it would be great if they did.

    Easy to understand and covers a range of topics that could be covered to help us with Cystic Fibrosis discuss ways in which we could get help from. I like that the form is filled out before a clinic appointment so that you can get your thoughts down on paper first without the pressure or anxiety of opening up to someone first.

    Clinicians from The West Midlands Adult CF Team now use the HRB screening tool as part of their annual review with patients, as our research suggested that new modular therapies to treat CF increased the risk of engagement in HRB as improvements in symptoms reduced the salience of risk associated with HRB. During the COVID pandemic, clinical care was moved online but clinicians continue to help PwCF identify their HRBs and this helps clinicians know what HRBs their patients are engaging in (S02).

    A Guide to Mindful Eating for PwCF and Mindful Eating Practices for PwCF

    The need for Eating Behaviour Interventions specific to the needs of PwCF was highlighted by the clinical team at West Midlands Adult CF centre (S02). We developed the ‘Guide to Mindful Eating for PwCF’ and 3 CF specific Mindful Eating Practices based on evidence from our research studies. Initial versions were shared with Specialist CF Dieticians at a national CPD event and promoted discussion around the need for changes in practice to include psychological interventions such as mindful eating. Lack of knowledge in mindful eating and CF specific needs were identified as barriers to implementation.

    The guide and tools were trialled with dieticians (N=12) (S01) and PwCF (N=9) (S01). 8 dieticians completed the questionnaire and consented to have their response included in the REF submission. Prior knowledge of mindful eating was reported as ‘no knowledge’ (2), ‘slight knowledge’ (4) and ‘moderate knowledge’ (2). Everyone reported increased knowledge after reading the guide with 5 reporting ‘moderately knowledgeable’ and 3 ‘very knowledgeable’. The tools were evaluated as useful, easy to use, and implementable in clinical practice:

    “This is exactly what is needed, theory and knowledge on mindful eating alone would not make me fully embrace this with patients but with this tool I would feel more confident.”

    “Easy to understand, quite intuitive to use […] Definitely useful to help understand food choices etc”

    Our ‘guide to the psychology of eating behaviours for people living with Cystic Fibrosis’ provided information to clinicians with limited existing knowledge on this topic, and along with our tools, was used to identify the most effective ways of using elements of mindful eating behaviours to support individuals with their specific needs.

    Overall, 8 PwCF consented to have their data included in the REF submission. On initial evaluation, all agreed that the guide was easy to understand and that the tools would be helpful in practice.

    “It was really good to understand mindful eating and to know about this”

    “It was honestly extremely interesting and I will definitely be implementing it a lot more.”

    Four PwCF were asked to engage with using the tools over a period of two weeks (S03), all reported that their knowledge of mindful eating had increased and 3 people reported that they had incorporated elements of the tools into their eating practices and found them helpful in identifying unhealthy eating patterns and eating a more varied diet:

    “The timetable diary of the food I’m eating clearly shows the pattern on how I consume food that isn’t healthy as a habit”

    “I had started to think about eating better due to diabetes and weight gain this just gave me another tool in the box”

    Overall changes in clinical practice

    Clinicians have noted that their practice of care has been improved as a result of proposals put forward by the research team. For example, the clinical psychologist the team worked with noted:

    “Using the evidence based, collaborative research produced over a number of years, the team made several proposals for improving care which have been adopted by clinicians. These have included improving knowledge of HRBs amongst clinicians and incorporating the HRB questionnaire into annual reviews with patients” (S04)

    Additionally, the same clinical psychologist noted that:

    “The research collaboration and the tools which have been created on the basis of the research conducted by Egan, Keyte and Mantzios influenced the way we offered care for adults with Cystic Fibrosis, particularly with how we approached discussing engagement in health risk behaviours and eating behaviours. The research demonstrated that some patients felt that there was a lack of clear information provided on the specific impact of HRB’s on CF and this is now made more explicit by HCPs on our team. Raising awareness of the gap in knowledge with our team was an important step in improving practice to identify patients at risk of engaging in HRBs and providing them with specific information on risks to enable patients to make more informed decisions regarding their health behaviours”

    The lead respiratory consultant noted:

    “the research conducted by the team at Birmingham City University helped us provide a greater level of care at the West Midlands Adult CF Centre. The research and the outcomes that our collaboration was able to achieve has clear implications for other health practitioners in their on-going treatment of adults with CF”. (S02)

    The work of Egan, Mantzios, and Keyte has therefore influenced clinical practice in terms of how HCPs deliver their care for PwCF. Additionally, the research has helped PwCF identify their own HRBs, which in turn helps HCPs to provide more guided and tailored healthcare advice.
    Impact date20142020
    Category of impactHealth impacts