16 May 2023
Yvonne Jeanes reveals how dietetic-led services and remote appointments are helping patients manage their condition.
Dietetic provision for adults with coeliac disease (CD) has evolved over time. Service changes aim to improve patient experience, access to dietetic services, quality of care and cost savings, in the face of increasing patient numbers and the COVID-19 pandemic.
Historically, adults with CD would be diagnosed and manged by a gastroenterologist, with input from a dietitian via one-to-one in-person consultations in a hospital outpatient setting.
Over time, healthcare provision has diversified to a point where now, dependent upon where patients live, there is a broad spectrum of NHS care offered to adults with CD, with digital content being incorporated into patient pathways. This review will focus on innovative dietetic services for adults with CD and the evidence available on their effectiveness.
Dietitians highly valued in CD
Guidelines focus on a standardised approach consisting of diagnosis, patient education and annual reviews thereafter.1 With very limited evidence for best practice, discussions continue with regard to the frequency of reviews, service offered and healthcare professionals involved.
NICE highlights the challenge: “Making sure people have access to a healthcare professional trained to give specialist dietetic advice in relation to coeliac disease.” They continue with: “There is a lack of dietitians in the NHS nationally, and specifically a lack of dietitians who have a specialist interest in coeliac disease or gastroenterology.”1
It has been observed that discharge of patients with CD to primary care, in many cases, results in their complete loss to follow-up,2 thus it will come as no surprise that in a UK survey most adults with CD were not being offered annual reviews.3
A study from over 30 years ago demonstrated the importance of regular follow-up to assist adherence to a gluten-free (GF) diet.4 Of interest, 85% of adults with CD considered annual reviews important in their CD care; these patients had significantly lower health literacy, poorer GF dietary adherence and lower gluten-free dietary knowledge scores compared with those who did not consider annual reviews important.5 The authors highlight that this sub population has a greater need for support and guidance, which fits in with an emerging view within the NHS that limited resources should be targeted towards patients with the most need for support to enable successful disease management.6
As we know, dietetic provision serves to help enable patients to follow a GF diet, improve nutritional adequacy, and importantly minimise treatment burden (Table 1).7 In a recent survey, 62% of patients’ first choice would be to see a dietitian with 80% of those requesting a specialist dietitian.5
Surveys undertaken just prior to the COVID-19 pandemic reported that the predominance of dietetic provision in the UK was via one-to-one in-person appointments,8,9 though it is recognised that the time allocated for clinics is often insufficient.9 In response to the pandemic, telephone and online video one-to-one appointments have been widely adopted.
Group education sessions
The rise in patient numbers has increased the demand for dietetic services and has led to increased waiting times for newly diagnosed patients; with no further funding available, alternative approaches are required to increase service capacity.10 Since 2010, group education sessions have been offered to adults newly diagnosed with CD and more latterly for annual reviews,10 with recognition that not all patients are suitable, and some will require a one-to-one appointment.
Approximately a third of dietetic departments offer group sessions.8,9 The time from diagnosis to accessing a dietitian substantially reduced and enabled greater capacity for newly diagnosed patients.11 The social and emotional benefits of shared experience and practical tips between group members are highly rated by patents:11 “I’d recommend the group – being with others in the same situation, knowing you’re not dealing with it on your own.”
“I did quite a bit of research on the internet, but found that the session with the dietitian gave me more of a clear understanding.”11
A study comparing one-to-one with group clinics reported, at follow-up, similarities in GF dietary adherence scores and serological markers.12 There were also significant improvements in folate and vitamin D levels with both, demonstrating the effectiveness of group education sessions for CD.
Group clinics are a cost-saving intervention, with an estimated 54% reduction in dietetic resources, and with no detriment to patient education and GF diet adherence.12 Attending in-person group clinic does require patients’ time and potential inconvenience to work and life commitments; during the pandemic, online group clinics were available for some patients with varying success.13,14
Dietetic-led CD services
Dietetic-led CD services have been in place for over 20 years,15 albeit only in some NHS trusts. Dietetic-led annual reviews are effective and reduce costs for medical gastroenterology.15 Implementation of a dietetic-led service for newly diagnosed patients resulted in a shorter wait time to see a dietitian.16 Additionally, as dietetic assessments revealed inadvertent gluten consumption, fewer blood tests and repeat biopsies were required.16
There is scope to expand dietetic-led services within primary care through PCN dietitians and first contact dietitians. In response to the pandemic, the British Gastroenterology Society released interim guidelines supporting the non-biopsy diagnosis of CD – under specific conditions.17 These guidelines will streamline the diagnosis of CD for many patients and negate the need to undertake an invasive duodenal biopsy. With the inevitable move from secondary to primary care diagnosis of CD, a dietetic-led service is ideally placed to offer appropriate support and management.7
In Scotland, the CD pathway includes a dietitian-led service from confirmed diagnosis until 12 months post diagnosis where, if stable, patient care is transferred to community pharmacy for access to prescribed GF foods and an annual health check.18 The pathway has moved care from acute gastroenterology consultants to a dietetic-led community-based service. Since the inclusion of non-biopsy diagnosis, patients are getting a diagnosis and access to a dietitian more quickly.13
Telephone and online video appointments: patients’ views
It has been known for a while that traditional outpatient appointments in a hospital setting are often considered problematic; patients frequently reported issues including travel and car parking costs, needing to take time off work, and frequent changes to appointment time.19
Telehealth services in CD have been available since before the pandemic, e.g. a Scottish CD dietetic-led service was offering virtual appointments as part of their service before the pandemic13 – it is the largescale offering across the UK that has changed since 2020. An evaluation of a telephone clinic provides evidence that it is an effective format to improve GF dietary knowledge and adherence in adults.20 Online and telephone appointments provide flexibility in service delivery. The majority of all patients (82%) wanted to be able to request an appointment on an ‘as and when needed’ basis, and 78% preferred to have access to dietetic expertise via email or phone.5
Discussions are underway as to what provision will be available in the future, partly informed by the success of online and telephone appointments during the pandemic, thus it is important to hear from the service users. I am aware of two CD studies from the UK. The Sheffield group reported that the majority of younger adults regarded telephone and video reviews as equal value to in person, whereas less than half of older adults considered them of equal value.21
In a cohort of adults with CD whereby over 90% were confident in using technology, half (51%) still prefer an ‘in-person’ appointment, 25% a telephone or online appointment and 24% reported no preference.22 Patients with a lower household income or without a degree qualification were more likely to request an in-person appointment.22
The British Society of Gastroenterology recommendations highlight:23 “…there will be some patients who do not have access to a telephone or appropriate information technology… It is essential that accessibility to remote consultations is monitored to ensure that equality and diversity legislation is met. Patient satisfaction and evidence of efficacy is needed through audit and quality improvement projects.” Patient (self) selection is key, with telemedicine available for those comfortable with the use of technology.
Dietetic-led pre-recorded online content
Dietetic-led digital content for CD has been available for several years. It can enable faster access to dietetic care and empower patients to self-manage their condition.
In 2018, Cardiff and Vale University Hospital incorporated a YouTube video for those newly diagnosed; 77% watched the video within five days of receiving the letter, reporting that their knowledge of where gluten is found in the diet had improved.24
Patient webinars25 – free to all – were developed in 2017 by dietitians in Somerset, and the ‘Newly diagnosed with coeliac disease’ webinar has been incorporated into patient pathways for several NHS trusts. Evaluation of the webinar is underway with an online questionnaire pre and four weeks post watching the webinar. Preliminary analysis has shown significant improvement in GF dietary knowledge score and participants reported they were more likely to avoid cross-contamination within the home environment and more likely to enquire about food preparation by others after viewing the webinar.26 Furthermore, it is important to know which patient groups cannot access the service, thus a service evaluation is exploring accessibility and barriers to webinar viewing. For example, digital content is predominantly in English, with very limited resources available in other languages.
There is a tremendous amount of ‘gluten-free living’ information online, including social media, with minimal regulation in the quality of content. Patients with CD access social media networks to support them living GF. The ability to deliver reliable dietary information to patients in a faster time frame minimises the hazard of incorrect self-education.
There is an increasing number of dietitians on several social media platforms, though as yet I am not aware of any studies exploring the impact of the content on people managing their CD. In the US, dietitians have embraced TikTok and uploaded CD content successfully engaging children and adolescents with the educational content.27
It is important that the views of patients with CD with differing health or digital literacy, minority ethnic groups, and those who are not adhering to the GF diet or attending annual reviews, are heard, to enable the healthcare service to reach those in particular need.
Table 1. Dietitians in the management of coeliac disease7
ASSESS NUTRITIONAL STATUS
EDUCATE, INFORM AND ENABLE LIVING GF
ASSESS PSYCHOSOCIAL STATUS
INCLUSIVE OF DIETARY CONSIDERATIONS FOR COMORBIDITIES
- NICE (2015) NICE guideline [NG20] Coeliac disease: recognition, assessment and management. www.nice.org.uk/guidance/ng20
- Pritchard L et al. (2020) Comparing alternative follow-up strategies for patients with stable coeliac disease. Frontline Gastroenterol. 11, 93–97
- Kallos S, Brooks N, & Jeanes Y (2020) A cross-sectional online patient survey of annual review for coeliac disease. J Hum Nutr Diet 33, 6-15
- Bardella MT, et al. (1994) Need for follow up in coeliac disease. Arch Dis Child. 70, 211–3.
- Jeanes Y et al (accepted for presentation at BSG annual conference 2023) Coeliac disease: In person appointments and annual reviews remain important for a subset of patients.
- Rodríguez-Herrera A, Reyes-Andrade J, & Rubio-Escudero C. (2021) Rationale for timing of follow-up visits to assess gluten-free diet in celiac disease patients based on data mining. Nutrients 13, 1–8.
- Trott N, Costas Battle C, and Jeanes Y (2021) Non-biopsy diagnosis of coeliac disease: increased diagnosis and how dietitians can help. BJGP Life Feb.
- Kallos S & Jeanes Y (2020) Cross-sectional survey of the dietetic provision for adults with coeliac disease in the UK J Hum Nutr Diet 33: 6-15
- Rej A, et al. (2020) National survey evaluating the provision of gastroenterology dietetic services in England. Frontline Gastroenterol. 12, 380-384
- Odale C (2013) Managing increased diagnosis of coeliac disease through group education. Network Health Digest 3.18
- Odale C (2015) A dietetic-led coeliac service incorporating group education. A dietetic-led coeliac service incorporating group education | NICE
- Rej A et al (2020) Is Peer Support in Group Clinics as Effective as Traditional Individual Appointments? The First Study in Patients With Celiac Disease. Clin Transl Gastroenterol 11: e00121
- Yuil R. (2021) Coeliac UK annual conference talk https://www.coeliac.org.uk/research/ourapproach/research-conference/research-conference-2021-coeliac-disease-beyond-2020-what-lies/
- Mehta P, et al. (2021) Telehealth and Nutrition Support During the COVID-19 Pandemic. Komp Nutr Diet 1, 110-112.
- Wyle C, Geldart A Winwood P (2005) Dietitian-led coeliac clinic: A successful change in working practice in modern healthcare. Gastroenterology Today 15, 11-12
- Costas C. (2020) Coeliac disease Is dietetic-led the best way forwards? Complete Nutrition 20, 43-45
- British Society of Gastroenterology (2020) Interim Guidance: COVID-19 specific non-biopsy protocol for those with suspected coeliac disease. Available at: https://www.bsg.org.uk/covid-19-advice/covid-19-specific-non-biopsy-protocolguidance-for-those-withsuspected-coeliac-disease/.
- NHS Borders Coeliac pathway https://nhsbguidelines.scot.nhs.uk/clinical-guidelines/acute-services/gastroenterology/
- Muhammad H, et al. (2021) Experiences of outpatient clinics and opinions of telehealth by Caucasian and South Asian patients’ with coeliac disease. J Pt Exp. 8,
- Muhammad H, et al. (2021) Telephone clinic improves gluten free dietary adherence in adults with coeliac disease; sustained at 6 months. Frontline Gastroenterol. 12: 586-592.
- Trott N, et al (accepted for publication) Long-Term Follow-Up in Patients with Coeliac Disease in The Pandemic-Era: A View from Sheffield the NHS England National Centre for Adult Coeliac Disease.: Follow Up Preferences in Adult Coeliac Disease. Gastroenterology and Hepatology From Bed to Bench Journal (GHFBB).
- Orlandi L, Muhammad H, Jeanes Y (2022) Patient view: online and telephone appointments for coeliac disease. Presented at the International Society for the study of Coeliac disease conference 2022.
- British Society of Gastroenterology (2021) Renewal, Redesign and establishing the “New Norm” https://www.bsg.org.uk/covid-19-advice/bsg-guidance-rebooting-gastroenterology-and-hepatology-outpatients-in-the-wake-of-covid-19/
- Bolton A and Constantinou C (2020) Embracing technology – evaluation of video education in coeliac disease. Dietetics Today July/August 22-23
- Seamark L, et al (2023) ID5.4: Dietitian-led webinars: A positive impact on patient symptoms, knowledge and behaviour https://cahpr.csp.org.uk/content/ahp-research-innovation-anniversary
- Weisbrod V (2022) https://harvardmacy.org/blog/tiktok-for-celiac-disease-gluten-free-diet-education
Dr Yvonne Jeanes
Research and Policy Lead for the BDA’s Gastroenterology Specialist Group
Dr Yvonne Jeanes RD is Research and Policy Lead for the BDA’s Gastroenterology Specialist Group & Associate Professor Health Sciences, University of Roehampton.