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Changing the face of Chronic Pancreatitis: Tallaght University Hospital researchers establish a patient support and advocacy group

Today on World Digestive Health Day, we are focusing on a condition that typically receives little attention - chronic pancreatitis. It is a progressive, incurable condition in which the pancreas becomes increasingly inflamed and damaged, and therefore patients develop an inability to properly digest and absorb food, leading to distressing and severe intestinal symptoms. They also develop diabetes, typically in the latter stages of disease. One of the causes is excessive alcohol consumption, however this is not the only cause. Patients may also develop chronic pancreatitis due to high lipids (fat) in the blood, gallstones, genetic causes, and for some patients, the cause may be unknown. The prevalence in Ireland is among the highest in Europe. Clinicians and researchers in Tallaght University Hospital (TUH) and the Department of Surgery in Trinity College Dublin (TCD) are working to better manage this disease.

Professor Kevin Conlon, Chair of Surgery, TCD, has a long-standing interest in diseases affecting the pancreas. He has held leadership positions in many National and International surgical societies including as President of the Pancreatic Society of Great Britain and Ireland, and the European and African Hepato-Biliary Association. Professor Conlon’s research group at TUH /TCD have developed an internationally-recognised multidisciplinary chronic pancreatitis service, have participated in the development of international clinical guidelines, and have established a pancreatitis research team. The multidisciplinary clinical team have developed patient care pathways, and run physician- and specialist nurse-led clinics, as well as the only dedicated type 3c diabetes/pancreatitis clinics in Ireland. Recently, the group secured funding to develop a mobile phone app for this condition, known as the SmartCP app. This initiative has been funded by the Department of Public Expenditure and Reform (DPER) via the ‘Public Service Innovation Fund 2022’.

Professor Conlon describes the next steps in chronic pancreatitis care in Ireland:

We are working to move our service from delivering care to patients predominantly as in-patients to predominantly as outpatients, and have implemented structures to reduce our waiting lists. The next steps are to developed an integrated care service to develop a truly patient-centred service. As part of this, we are developing the SmartCP app along with TUH colleagues in ICT, the Innovation Department, as well as Technological University Dublin. This project provides a unique opportunity to harness technology to revolutionise the clinical management of this devastating disease. We are very grateful to DPER for supporting this exciting project. In addition, we have been well supported by the Health Research Board and The Meath Foundation of TUH over the years, for which we are extremely appreciative.”

Ms Marie Egan, Clinical Nurse Specialist for Chronic Pancreatitis is instrumental in running the clinical programme for chronic pancreatitis in TUH. Ms Egan runs a nurse-led clinic as well as a specialist type 3c diabetes clinic, one of the few such clinics on the island of Ireland. Ms Egan works in tandem with Professor James Gibney, Consultant Endocrinologist in TUH and Assistant Professor in the School of Medicine, in providing this much-needed service for type 3c diabetes. Ms Egan explained this little-known condition:

Type 3c diabetes differs from both type 1 and type 2 diabetes, and is typically difficult-to-manage and may be described as ‘brittle’ diabetes. Patients typically experience wild swings in blood sugar from dangerously low (hypoglycaemia) to very high (hyperglycaemia). This may mean that clinicians believe that patients are not compliant, but in fact, it is a feature of the disease. Once we see them in our specialist clinic, we establish a programme of care that improves their management considerably”.

Although chronic pancreatitis is very much a digestive disease, it receives much less attention than other comparable conditions such as inflammatory bowel disease and coeliac disease, which are more common. Nevertheless, the disease results in many nutrition-related problems, including nutrient deficiency, type 3c diabetes, and osteoporosis. The TUH/TCD team have participating in the writing of several international guidelines including the European HaPanEU guidelines, The UK Pancreatic Exocrine Insufficiency guidelines and are currently involved in the development of European Guidelines on the diagnosis and therapy of pancreatic exocrine insufficiency. Whilst nutrition-related management of chronic pancreatitis has improved over the last few years, the disease is complex and often difficult to manage meaning that patients need a lot of support. Dr Sinead Duggan, Senior Research Fellow in the Department of Surgery, School of Medicine, TCD has researched this condition for more than a decade:

Management has greatly improved, and there is much more awareness of the importance of nutritional intervention. For example, our early work on bone health has permeated the guidelines and was instrumental in establishing routine bone density assessment for patients with chronic pancreatitis. However, this is a difficult disease, and patients suffer from distressing digestive symptoms and severe, untreatable abdominal pain. When it comes to research, patients have not been heard in a systematic way. We have taken steps to establish a patient advocacy group (Chronic Pancreatitis Ireland) and are hosting an online patient event on the 14th of June via zoom. We hope that this group will be a supportive environment for patients, as well as advocating for patients and their carers. We feel that this is sorely lacking at present, and therefore patients with chronic pancreatitis do not currently have a seat at the table. We would like to change this.”

For more information on the chronic pancreatitis patient zoom event on 14th June 2022, see twitter handle @ChronicPancIRE or email chronicpancireland@gmail.com