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OC11 Health professionals survey of transition service in eosinophilic oesophagitis in UK – a BSPGHAN EoE Working group initiative
  1. Raj Singh Parmar1,
  2. Kerryn Moolenschot2,
  3. Amanda Cordell3,
  4. Ed Gaynor4,
  5. Lucy Jackman4,
  6. Hema Kannappan5,
  7. Jenny Epstein6,
  8. Joseph Chan7,
  9. Diana Flynn8,
  10. Mark Furman9,
  11. Julie Thompson10,
  12. Marcus KH Auth1
  1. 1Alder Hey Children’s Hospital, Liverpool UK
  2. 2St Georges Hospital, London
  3. 3EOS Network
  4. 4Great Ormond Street Hospital London
  5. 5University Hospital Coventry and Warwickshire
  6. 6Chelsea and Westminster Hospital NHS Foundation Trust
  7. 7Noah’s Ark Children’s Hospital
  8. 8Royal Hospital for Children, Glasgow
  9. 9Royal Free London NHS Foundation Trust
  10. 10Guts UK Charity

Abstract

Eosinophilic esophagitis (EoE) is a chronic, immune/antigen-mediated oesophageal disease requiring surveillance and treatment for most patients1 and an increasing prevalence of around 1 in 3000 in the UK.2 3 It has significant impact on physical and mental health and quality of life. Formal transition of care from paediatric to adult services may improve symptom control, concordance with therapy and reduce emergency presentations.4 Therefore the BSPGHAN EOE Working group evaluated current arrangements for transition of patients with EoE.

The BSPGHAN EoE WG held number of professional consultations and developed an EoE Transition survey questionnaire for professionals, patients and parents. The transition survey was circulated electronically via BSPGHAN newsletter, EOS network, GutsUK Charity website and WhatsApp to BSPGHAN/PeGHAN members.

The survey period ranged from October to Nov 2023 and received 29 health professionals response.

Majority response were received from Paediatric Gastroenterologists (15/29) followed by Paediatricians with special interest in Gastroenterology/allergy (11/29) and working in tertiary care (18/29) followed by secondary care (11/29) from all across the UK.

We identified variation between units in terms of professionals/teams looking after children with EOE (figure 1).

Most of the professionals transfer care by referral to adult gastroenterologists (60%) followed by GPs (16%) and most of referrals were paper referrals (73%) followed by face 2 face in MDT setting or paediatric to adult referral pathway (12% each)

It seems typically transition/discharge of patient to adult services occur at 16yrs (17/29) followed by 17yrs (8/29), and 18 yrs (4/29).

A formal transition process is reported in only 27% (8/29) of units with no such process in 73% (21/29) units.

Among 8 units with established transition clinics, 5 units reports >50% attendance, and 3 units report <25% attendance.

Out of 21 units with no formal transition process, 14 units consider the need.

Overall professionals identified following barriers for successful implementation of a transition process: Lack of guidance/guidelines on transition (27%), lack of resources (23%), lack of a transition clinic (20%), lack of adult gastroenterology service with EoE interest (20%), lack of adult dietitian (10%).

This transition survey captures view from all across the UK which represents the first nationwide EoE transition survey in the UK. The majority of EOE patients are discharged to adult gastroenterologist by means of traditional paper referral letter. Most of the units transition at the age of 16 years to 17 years. However national recommendation is for the transition process to start around 13–14 years of age.5 There is lack of a formal transition process in 70% of the units. In places where transition services are available there is good engagement as evidenced by high attendance. Main barriers for establishment of transition process is a lack of guidance/guidelines. The EoE working group is in the process of collecting responses from carers and patients and will develop evidence based guidance to patients and professionals.

Abstract OC11 Figure 1

Paediatric team that cares for EoE patients in the region

References

  1. Muir A, Walk G, Eosinophic esophagitis: a review. JAMA 2021; Oct 5;326(13):1310–1318.

  2. Dellon ES, Epidemiology and natural history of eosinophilic esophagitis. Gastroenterology. 2018 January;154(2)

  3. Gutscharity. org.uk/advice-and-information/conditions/eosinophilic-diseases

  4. Dhar A, Haboubi HN, Attwood SE, et al. British Society of Gastroenterology (BSG) and British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) joint consensus guidelines on the diagnosis and management of eosinophilic oesophagitis in children and adults. Gut 2022;71:1459–1487.

  5. Nice Guideline (NG43): Transition from children’s to adults services for young people using health or social care services.

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