COELIAC DISEASE MANAGEMENT DURING SARS-CO-2 PANDEMIC: PATIENTS AND FAMILIES EXPERIENCE FROM SOUTHEAST ENGLAND

ABSTRACT

Introduction: The health care system had to evolve rapidly to adapt to the multiple challenges posed by SARS-CoV-2 pandemic although significant progress has been made with vaccines and immunisation programmes, the challenge seems to be far from over. At Maidstone and Turnbridge Wells NHS trust we provide tertiary paediatric gastroenterology services to paediatric patients from Kent and East Sussex, including new patients with suspected Coeliac disease and long-term follow-up. Objective: We looked at the patient and their family's experience with regards to multiple aspects of management of Coeliac disease (CD) during the government-imposed lockdown and various restrictions from March 2020 to November 2021. Methods: We designed a questionnaire to assess patient's experience of management of their coeliac disease and included identifying symptoms during lockdown, access to gluten free (GF) products, and emotional wellbeing. Patient details were collected from our database. Phone calls were made and data was collected after obtaining verbal consent from patients and caregivers. Results: 50 telephone questionnaires were completed with patients (or parents of the patient) with diagnosed coeliac disease. The patients interviewed were between 3 years to 16 years. Our standard follow-up practice for patients with confirmed diagnosis with CD clinic is an annual review with specialist gastroenterology nurse and dietician and this target was met for 72% (36/50) of patients (both virtual and face to face clinic reviews). 98% (49/50) of patients denied development or worsening of any GI symptoms during the lockdown. 96% (48/50) of patients reported normal development in growth and height since the lockdown. 98% of patients (49/50) were able to procure GF product during the lockdown. During the initial 3-4 weeks of lockdown, some families reported of limited options of GF products but were still able to procure them. Patients and their families reported being emotionally well. All families were made aware to contact MTW nursing team for advice. The primary online resource used by families for guidance was Coeliac UK website with 50% (25/50) of families using the service. Conclusion: During SARS-CoV-2 pandemic, patients with coeliac disease managed CD well despite the lockdown. We managed to see majority of our patients (virtual/face to face clinics) There was no significant impact on procuring GF products and emotional well-being despite multiple challenges.