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Long-term care for patients with Coeliac Disease: A review of the literature and future directions

Kurien M, Trott N, Sanders DS. (2016)

J Hum Nutr & Diet 10.1111/jhn.12379

The only accepted treatment for CD is a strict lifelong gluten-free diet (GFD) allowing restoration of the structure and function of the small intestinal mucosa. Adherence to a GFD has also been shown to improve morbidity, quality of life and potentially mortality. However, reported strict adherence rates range between 42 and 91%. National and international guidelines advocate long-term follow-up of this patient group to help control ongoing symptoms, facilitate adherence to a GFD and for avoidance or early detection of complications. However, uncertainty exists about the provision of follow-up care
This narrative review evaluated the various methods of follow up and the differing tools used for assessment of dietary adherence. An electronic search of the literature was undertaken using the online databases PubMed and Web of Science. All articles discussing the subject matter were thoroughly reviewed. Articles from alternative sources were also assessed and incorporated if deemed relevant.
 
Different methods of follow up
 
Hospital Outpatient Follow-Up
 
At present, uncertainty exists as to how many patients receive this method of follow-up and there is a paucity of evidence demonstrating that improvements in long-term outcomes are achieved. A previous study suggested that a dedicated doctor-led coeliac follow-up clinic could improve adherence to a GFD, however, this study was a single-centre observational study with potential biases. In addition, a small survey of patients with CD found that hospital follow-up ranked highly with patients as to the way they wanted follow-up care to be delivered.
 
Primary Care Follow-Up
 
The Primary Care Society of Gastroenterology (PCSG) guideline (2006) advised that, following diagnosis, patients with CD should initially be reviewed in the gastroenterology department and, subsequently,  in primary care on an annual basis. This allows delineation of patients requiring specialist support in secondary care due to persisting symptoms, as well as reducing the burden on hospital gastrointestinal services to deliver follow-up care for all CD patients. The decentralisation of CD follow-up from tertiary to primary centres in Finland was not associated with a detrimental effect on dietary adherence. However, follow-up care for CD patients in primary care remains variable in the UK.
 
Community Pharmacy Follow-Up
 
In Scotland, a gluten-free food service (GFFS) was introduced to the community pharmacy contract in April 2014 as a pilot service and was subsequently introduced nationally in October 2015. This service allowed the provision of direct NHS pharmaceutical care to patients with CD, by providing a national pharmacy-led consistent service incorporating dietetic intervention and annual pharmacy health checks. A review of this service amongst key stakeholders showed strong support for this service and its continuation, however, the report concluded that further monitoring of the annual pharmacy health check was required to assess its effect and value.
 
Other types of follow
 
Other methods include an internet-based online intervention tool which demonstrated improvements over a three-month period. In ulcerative colitis (UC), a strategy empowering patients to use guided self-management helped to reduce doctor visits and was not associated with an increase in mortality. This model could potentially be applicable to CD, reducing the number of follow-up appointments.
 
Do all coeliac patients require follow-up care?
 
Mucosal healing is often considered the outcome measure of choice to assess dietary adherence in CD, as the absence of healing increases the risk of associated complications. Based on symptoms and histology, it could be possible to classify patients with CD into four main groups at follow-up, helping to identify those with the highest risk of developing complications. In rationalising services this way, it could be possible to ensure individuals with the highest risk receive the greatest level of support and follow-up care whilst achieving potential cost savings. However, a limitation to this approach is that follow-up biopsies are not mandated in the UK. Alternative markers to assess adherence have been advocated, however, further work is required to establish the most effective, non-invasive marker for GFD adherence.
 
Tools to assess adherence to a GFD
 
Dietitian Evaluation
 
If undertaken by a skilled dietitian this has been shown to be a highly effective method of assessing adherence to the GFD compared to self-reported adherence by patients and serological markers. However, there is no standard or quality control for dietetic review making standardisation in both a clinical trial and beyond into clinical practice problematic. There is also no evidence that this can be substituted for a biopsy to predict mucosal damage.
 
Patient Reported Outcomes
 
These are unreliable measures of adherence. Villous atrophy has been shown to persist in some CD patients despite clinical improvement in symptoms on a GFD.
 
Coeliac Serology
 
Whilst there are benefits to this approach in terms of costs and tolerability, concerns exist about both endomysial antibodies (EMA) and IgA anti-tissue transglutaminase (tTG) antibodies as surrogate markers of adherence. Normalisation often occurs well before normalisation of villous atrophy. Despite the limitations, coeliac serology is frequently checked at follow-up to help assess adherence.
 
Histology
 
Small bowel histological assessment remains the only definitive way of determining healing of the mucosa, which can inform long-term outcomes. Recent work has shown than only two in three adults with CD, who were adhering to a GFD, had complete histological recovery after 1 year. Recent British Society of Gastroenterology (BSG) guidelines do not mandate follow-up biopsies, with guidance to limit these to selected high-risk individuals.
 
Adherence Scores
 
Novel adherence scoring systems such as the Celiac Dietary Assessment Tool (CDAT) offer a means of overcoming limitations of other tools such as accuracy, costs and ease of use. However, these have predominantly been used in the research setting to assess adherence and allow comparisons to be made between studies.
 
Conclusions
 
There are increasing numbers of patients being diagnosed with coeliac disease in the UK. At the same time gastroenterology services are currently inadequately funded to provide equitable follow-up care for this patient group. Further work is now required to establish which model of follow-up care is best applied within the current NHS environment to ensure high-quality, equitable and cost-effective care which is acceptable to this patient group.

Link to original paper
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