“Mighty oaks from little acorns grow”: The development of joint multidisciplinary clinics for children and young people with type 1 diabetes and coeliac disease

The estimated prevalence of coeliac disease in people with type 1 diabetes in the UK ranges from 1.6% to 10%, with a systematic review demonstrating a pooled prevalence of 6% worldwide (Elfström et al, 2014). Children and young people (CYP) with type 1 diabetes are expected to attend routine diabetes clinics at least four times per year, and recent guidance from the British Society of Paediatric Gastroenterology, Hepatology and Nutrition states that children with coeliac disease should be seen at least annually (Murch et al, 2013). In the UK, there is wide variation in clinical care and equity of care for CYP with both conditions. In Somerset, our local cohort of children with these two long-term conditions is increasing. The prevalence is in keeping with national data; however, we are experiencing a larger cohort of children newly diagnosed with both conditions either simultaneously at presentation or in quick succession. We became increasingly aware that we were expecting our families to attend multiple clinics per year for specialist advice regarding their conditions. Services for each condition were already well established in our hospital, but the combined/joined-up services had never been reviewed, and they relied upon professional communication that was not patient-centred.

In his work Troilus and Criseyde, Geoffrey Chaucer, known as the father of English literature, wrote: “…as an ook cometh of a litel spyr…” (a spyr being a sapling). He implied that great things may come from small beginnings. This is very much how we view the rise and development of our joint multidisciplinary clinic for CYP with type 1 diabetes and coeliac disease. The idea started small, discussed in conversation during one clinic setting about patients’ repeated attendance for multiple clinics. It has developed into a regular biannual clinic, certainly the first of its kind in the south-west of England and even, to our knowledge, in the UK as a whole. In this article, we describe the development of this clinic and evaluate it according to feedback from its attendees.

The acorn: The origins and objectives of the joint clinic
Our objectives were to optimise the quality of the service our CYP and families receive with regard to both diabetes and coeliac disease, whilst also improving access and convenience for them. We were aware of the large number of clinic appointments families need to attend and, therefore, wanted to streamline our service provision to cover both diabetes and coeliac disease in one visit. We also wanted to optimise our support for CYP and families who receive a diagnosis of diabetes and coeliac disease concurrently, as they need much more support and can find the dietary alterations required for coeliac disease more challenging if they also have to adapt to the management of diabetes. Whilst implementing this, our objective was to make this change as patient-centred as possible, so it was important to prospectively collect feedback from CYP and parents, and to use this to fine-tune our service delivery.

We identified a cohort of CYP who had diagnoses of both type 1 diabetes and coeliac disease through medical records and through our departmental colleagues, including all members of the diabetes team and dietitians. We set up a clinic with a booking pattern of 40 minutes per patient, longer than the usual 30-minute pattern. We were conscious that a large number of staff would make the consultation more impersonal and less interactive, so we kept the number of staff involved to a minimum: a consultant paediatric diabetologist, a consultant paediatric gastroenterologist, a paediatric specialist dietitian and a paediatric diabetes specialist nurse, with access to clinical psychology if required. We aimed to start the consultation with discussion about the management of coeliac disease whilst the members of the diabetes team collated information regarding diabetes control, with the second half of the consultation dedicated to the latter aspect of care. We ensured that CYP and parents had access to all relevant sources of information for the two conditions, both in paper format and online. After the consultation, we asked them to provide us with their view of the service by completing the feedback form.

The sapling: Development of the combined clinic
After a pilot formulation, we developed an evaluation form for CYP and parents to fill in. It aimed to capture the experience of each family in relation to their attendance at the joint multidisciplinary diabetes and coeliac disease clinic, over the period of 2014–15. There were two to three clinics per year, with six to eight families per clinic. All questions were answered outside the clinic setting and were anonymised, with free text sections incorporated into individually rated statements regarding the service. The forms could be completed by either the parent or the child/young person. Questionnaires captured views on clinic setting, allocated timings, healthcare professionals present and confidentiality of discussing both medical conditions together. Results of this evaluation and a sample of comments from the free text sections are shown in Boxes 1 and 2.

The oak: The current clinic picture and research opportunities
Does this combined clinic actually result in improved outcomes? There is certainly evidence in the literature to demonstrate that the introduction of paediatric coeliac clinics leads to increased self-empowerment to manage the condition via specialist knowledge and access to Coeliac UK (the national support group) information (Whyte et al, 2011). In the longer term, we continue to collect data regarding the various aspects of care for our CYP, including diabetes control, growth and adherence to a gluten-free diet. Qualitative benefits are described in Box 3. We have clearly demonstrated a reduction in the number of blood tests that each child undergoes (by agreeing and combining tests with routine annual review bloods), resulting not only in a saving for the Trust in terms of laboratory testing but also in fewer blood tests for the child. We also continue to create financial savings for the Trust with improved access to paediatric gastroenterology and dietetics due to the combined services. It is difficult to capture financial improvement data per se for families, but parents have highlighted the reduced travel and parking costs and the lesser impact upon work and education due to reduced need to attend multiple clinics. The attendance rate for these combined clinics is consistently near 100%.

An additional benefit of these combined clinics is the consistency of information discussed and given, as well as the opportunity for further specialist learning for the diabetes team regarding the intricacies of coeliac disease management by an allied specialist team. The impact of two chronic conditions upon day-to-day management and upon wellbeing was well recognised.

The combined clinic has also allowed us to focus our research efforts in this area. As an example, we examined our practice in human leukocyte antigen (HLA) genotyping at diagnosis of type 1 diabetes, concluding that, in line with other recently published evidence, this was an unnecessary cost as well as being distressing for children and parents. Our results demonstrated that HLA typing has a low specificity for coeliac disease in children with type 1 diabetes (Cordingley et al, 2016). Similar results were found by Elias et al (2015) in the Netherlands, where 86% of 110 children with type 1 diabetes were HLA-positive despite the fact that only seven had diagnosed coeliac disease, and by Mitchell et al (2016) in Scotland, where 94% of the 176 children with type 1 diabetes were HLA-positive, of whom only 11 had diagnosed coeliac disease. Testing was complicated in our practice, requiring additional forms and external laboratory support. Parents perceived negative HLA results as valuable; however, positive results were difficult to understand and resulted in escalated anxiety and increased clinic visit duration because of the need for in-depth explanation. There were also financial implications, with HLA typing costing £38 per test, whereas coeliac serology only costs £8 per test. As we have approximately 30 children diagnosed with type 1 diabetes each year, stopping HLA testing saves approximately £1140 per year. In line with other larger studies, we have ceased HLA typing, as a high proportion of children with type 1 diabetes are HLA-DQ2/DQ8-positive.

The woodland: Hopes for further combined clinics
This is a simple initiative brought about by thinking outside the “NHS box” and looking differently at the patient’s journey and the expectations that we impose, often inadvertently, on families with multiple chronic conditions. It was devised to make life for families and CYP with two chronic conditions easier by making simple adjustments to our routine practice and working habits. It did not involve extra costs, funding or additional IT packages (the core team members were already in place), just simple adjustment of our clinic arrangements with a pure patient focus. We have been able to adapt our current local services with minimal change to working patterns for our team members and with maximum impact upon our CYP and families. There is no other service like this for children with type 1 diabetes and coeliac disease in the south-west region or even, as far as we are aware, in any other part of the country. The initial service has been extremely successful, and families are fully supportive of it continuing after its 2-year pilot.

In addition to positive feedback from parents (Box 4), our joint clinics were mentioned as a point of good practice in our recent National Diabetes Peer Review in September 2014 and were also highlighted as such to our Trust Executive Board. We are proud to have been commended in the National Quality in Care Diabetes Awards 2015 under the category of best initiative for CYP and emerging adults. The judges “really liked that patients were being consulted and each patient was assessed as an individual and not just part of a programme. It deserves praise for putting the patient at the centre of the initiative.”

Summary
Our initiative could easily be replicated in other district general hospitals and the concept could be extended to children with other multiple chronic conditions. Indeed, our paediatric colleagues in other speciality areas are reviewing their cohort of children to create similar combined clinics for children with long-term conditions. We have shared our work and successful feedback at our regional South West Paediatric Diabetes Network meeting, with positive response. A number of clinical leads have gone back to review their own practice and services, and several units are initiating their own combined clinics. We hope this may extend beyond the south-west region and allow further growth of “mighty oaks” nationally.