Patients’ and healthcare professionals’ perspectives on the reasons for long term follow up of coeliac disease and the manner it should take

Dr Manpreet Bains is an Assistant Professor in qualitative and mixed methods health research in the division of epidemiology and public health, University of Nottingham. Manpreet is a researcher who has forged a respected research career, particularly in qualitative methods spanning a broad variety of topics in public health and health services research.

What was the main issue your research was seeking to address?

Guidelines recommend that people with coeliac disease should be followed up annually by a relevant physician or dietitian in secondary or primary care. However, not only is the evidence that has guided these recommendations limited but the views and experiences of the patients, and healthcare professionals involved in its management have not been considered.

What were you hoping to find out through this research?

First, we wanted to understand the patients’ and healthcare professionals’ understanding and importance of follow up and current practice. Finally we wanted both groups’ views on the best way to manage long term follow up.

How successful was the project in achieving this?

We interviewed a broad range of individuals with coeliac disease (n = 50), including those who attend follow up and those who do not. We also interviewed healthcare professionals (n = 43) from general practice, dietetics and gastroenterology.  

Key findings from patient interviews:

  • Patients reported initial management was difficult due to confusion and lack of support with this having both physical and psychological implications.
  • Some individuals reported feeling supported by family and friends, whilst others felt isolated and found it difficult to socialise.
  • Most agreed that an annual review with a consistent healthcare professional with the appropriate knowledge would be sufficient form of follow up, along with additional services to deal with any immediate issues.

Key findings from healthcare professional interviews:

  • Some healthcare professionals felt there was a lack of evidence to suggest continued follow up, whilst others thought it was essential for ensuring compliance to the gluten free diet and prevention for further complications.
  • Many felt there was little benefit in chasing those who did not wish to attend, stressing that an element of patient responsibility and engagement was an important factor in the successful management of coeliac disease.
  • Current follow up practice indicated a raft of variations in treatment across the HCPs ranging from ongoing regular appointments and clinics to being discharged relatively soon after diagnosis.

Both groups agreed that the importance and purpose of a long term follow up should be stressed more clearly, and how to implement this.

How will this project benefit patients?

We have been able to identify both patients’ and healthcare professionals’ views on follow up. We have shown that practice is varied and therefore patients are receiving differing levels of treatments. Both groups share similar views on certain topics but some differences were found, suggesting that there would be some benefit in outlining clearly what is expected from both groups in terms of the follow up process.

How has the funding from Coeliac UK made a difference?

The funding has been pivotal in helping to delve into the area of long term follow up. Our research is the first that has explored both patient and HCP views on long term follow up; particularly views on current practice and the most optimal way of moving this aspect of care forward.

What are the next stages for this work?

Our work has identified various models for how follow up could be delivered; but we need to be able to obtain views on these in a larger sample of patients and healthcare professionals to take the work forward. We will use our findings to inform the development of these scenarios. For instance, participants will be asked to choose from who they would prefer to see gastroenterologist/GP, setting (hospital located 30 mins away/surgery a short walk) etc. By running this choice experiment in a larger group of people we will be able to come up with a list of potential follow up models that could be tested in a larger trial.

Principle Investigator: Dr Manpreet Bains

Institution: Division of Epidemiology and Public Health, University of Nottingham

Grant Awarded: £64.5k