Withdrawing gluten-free food from prescriptions in England: a mixed-methods study to examine the impact of policy changes on quality of life

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The only treatment for coeliac disease (CD) is a lifelong gluten-free diet (GFD). Better dietary adherence leads to fewer symptoms and an improved quality of life (QoL) but issues with availability and cost can make adherence challenging. In England, prescriptions for gluten-free food (GFF) have been accessible, for those with a medical diagnosis of CD or dermatitis herpetiformis, according to national prescribing guidelines until 2015.

The National Health Service (NHS) aims to provide an equitable service, however, increasing financial strain and the ability of Clinical Commissioning Groups (CCGs) to choose which services to provide at a local level, has led some CCGs to restrict or withdraw prescriptions. This has led to an inequitable service and given rise to concerns that this may have a negative impact on at least some people with CD. Evidence exists that around a quarter of people who do not receive a prescription adhere less to the diet.

 

The present study was conducted to assess the impact of removing access to GFF on prescription for adults with CD and took place prior to NHS England publishing guidance on GFF prescriptions in 2018. QoL, finances and access to GFF of people living in local areas where prescriptions had ceased were compared with those of people living in areas where prescriptions were still available. Areas with restrictions in place were not included due to a lack of clarity around the nature of restrictions.

 

A mixed-methods study was conducted consisting of a cross-sectional survey followed by a qualitative study. Adults (≥18 years of age), with a confirmed diagnosis of CD from a medical professional, were eligible to participate and participants were recruited for a postal and e-survey via Coeliac UK, the national patient charity for CD. The survey was sent to over 4000 members. Eligible participants were invited from 13 CCGs that still prescribed GFF according to the national prescribing guidelines (n=2131) as well as from 13 CCGs were prescriptions had stopped (n=1919). The non-prescribing areas were selected to ensure a geographical spread of urban and rural communities in England and these were matched for the prescribing areas. The survey questions focused on use of health services, availability and use of prescriptions (including a question on the impact of discontinuation of prescriptions) and the availability and cost of GFF. Validated QoL measures and a dietary adherence measure were also incorporated into the questionnaire. Over 800 participants consented to an interview with the topic guide covering: i) the impact of CD and the GFD; ii) the use of prescriptions for GFF and iii) the impact of changes in prescriptions.

 

1697 respondents were included in the analysis and confirmed a diagnosis of CD from a medical professional. It was noted that there was a significantly higher proportion of retired people in the non-prescribing areas as well as a higher likelihood of living in a deprived area. 24 people participated in the interview from 9 CCGs, 3 of which prescribed and the remaining 6 did not prescribe.

 

 

The survey found that dietary burden increased by stopping prescriptions. Self-reported prescription status was associated with a wider range of QoL issues, with those reporting restricted prescriptions also reporting a worse QoL compared with those not reporting any restrictions. The reporting of restriction of prescriptions is surprising considering the study had excluded CCGs with restriction policies at the outset. Self-reported prescription status was also found to impact more strongly on QoL than actual prescription policies and this highlights a clear need for patients to be correctly informed about local prescription policies. It may indicate that GPs are using their clinical discretion in relation to local prescribing policy and the clinical needs of some patients.

 

The survey showed that those living in non-prescription CCGs, reporting a higher impact from change in prescription policy, also had significantly lower QoL in all domains compared to those in non-prescribing who reported no or low impact from the change. More vulnerable people, such as those less able to afford GFF, had or were thought to experience a greater impact because of the policy change. In areas where prescriptions had stopped, a less favourable experience of the NHS was reported with less GP and dietitian consultation time.

 

Overall, it is encouraging to note that most of the participants in this survey were able to maintain a good QoL despite the local changes to prescription policy. However, there were issues of worse experiences of healthcare, fewer follow-up opportunities and inequities in care as a result of the changes in prescription policies which need to be carefully considered in relation to changes in local policy. This survey does not consider the potential longer-term impact of changes to prescription policies in this patient group either. Whilst new national guidelines in England recommend the continued provision of gluten-free bread and mixes on prescription, which fulfils the wish of participants for staple foods to be available on prescription, the list of allowed staple products is more limited than was suggested by participants in qualitative interviews.

 

Peters M., Crocker H., Jenkinson C. & Violato M. (2019) Withdrawing gluten-free food from prescriptions in England: a mixed-methods study to examine the impact of policy changes on quality of life. J Hum Nutr Diet. 33, 453464 https://doi.org/10.1111/jhn.12728

https://onlinelibrary.wiley.com/doi/epdf/10.1111/jhn.12728