TOFS has been championing lifelong follow-up for Adult TOFs for some time now, with effective transitioning to adult care being a critical element in long-term follow-up. Arrangements for transition are woeful or non-existent in many parts of the UK, so we were delighted to hear about this initiative from the team at Manchester, who held their first OA/TOF transition clinic in mid June, 2021.
Dr Omendra Narayan, Consultant Respiratory Paediatrician at Royal Manchester Children’s Hospital, spoke to TOFS about this important development.
The clinic has been in planning for a long time, but unfortunately, like lots of other things, it was delayed by the Covid pandemic.
The ESPGHAN guidelines in 2016 recommended transition from paediatric services, clinical follow-up and regular monitoring for Barrett’s oesophagus for those born with OA/TOF.
Some early/late teenage patients who would have seen our predecessors had already been discharged and we were asking ourselves the best way to ensure these children are not missed. So, in consultation with our paediatric respiratory, paediatric surgery and adult surgery colleagues, we decided we should invite patients back and run a transition clinic to catch up with them and plan ahead.
At the Royal Manchester Children’s Hospital we have 12 to 15 OA/TOF births every year. Our database revealed that we had about 17 or 18 OA/TOF patients who are now in the 16 to 18 age group.
The earlier that transition starts, the better, so we invited six of the youngest patients in this group to the clinic. We expect to run three of these clinics a year with four to six patients attending each clinic.
The team behind the clinic (l-r) : Dr Stuart Wilkinson (Consultant in Paediatric Respiratory Medicine), Mr David Wilkinson (Consultant Paediatric and Neonatal Surgeon), Mr Rob Peters (Consultant Paediatric Surgeon), and Dr Omendra Narayan (Consultant Respiratory Paediatrician)
With some of these teenagers having already been discharged, families were initially surprised to receive a call from us, but all of them seemed very pleased.
Six young adults attended this first clinic, meeting with surgeons from paediatric and adult care. Most of these patients and their families reported feeling ‘a bit lost’ since they left paediatric care, and, understandably, don’t as yet have the same trust in adult practitioners. Therefore, being able to meet an adult upper GI surgeon with a specific interest in them was a big step forward.
We now carry out endoscopic surveillance on all of our patients and aim to have recent biopsies available for the transition clinic. Interestingly, only two of these patients reported ongoing symptoms. Where warranted, we will organise referral to our respiratory and gastro colleagues in adult care.
In the next clinic these patients will see a complex care transition nurse who fulfils a very important role for those with complex needs. Patients will be able to access support with issues impacted by their conditions, such as education or employment.
We also hope to make the services of an adult-care-based dietitian available as the clinic evolves, similar to how our paediatric TOF clinic works.
Going forward, we aim to review four to six patients each year for transition, but this will be tweaked depending on perception, need and capacity.