385 JOP. Journal of the Pancreas - http://pancreas.imedpub.com/ - Vol. 17 No. 4 – Jul 2016. [ISSN 1590-8577] ORIGINAL ARTICLE JOP. J Pancreas (Online) 2016 Jul 08; 17(4):385-393. ABSTRACT Introduction Chronic pancreatitis is a progressive, inflammatory, malabsorptive disease of the pancreas which has significant health and socioeconomic consequences for patients. As a chronic disease, the general practitioner along with gastroenterologists and general surgeons play an integral role in the overall management of the condition, both in primary and hospital based care. The aim of this study was to conduct nationwide surveys of general practitioners and gastroenterologists/general surgeons to obtain information related to patient management, practice demographics, access to specialist services, patient numbers, awareness of guidelines, and perceptions about a potential national registry for disease surveillance. Methods A cross-sectional, descriptive survey. Electronic surveys were sent to gastroenterologists and general surgeons and postal surveys were sent to general practitioners working within the Republic of Ireland. Results The response rate for the general practitioner survey was 69% and 34% for the gastroenterologist/general surgeon survey. Majority of general practitioners (79%) and gastroenterologists/general surgeons (82.5%) reported seeing chronic pancreatitis patients in their practice. Almost all general practitioners (96%) and 69.1% of gastroenterologists/general surgeons were unaware of any national or international consensus guidelines for the management of chronic pancreatitis. Conclusions This study highlights the deficits in both primary and hospital based care in Ireland, and specifically emphasises that chronic pancreatitis is not being managed as a chronic disease in primary care. Moreover, this study identified a lack of guideline awareness of the existing chronic pancreatitis guidelines amongst specialists. These data provide guidance on the potential for education and training. Received March 17th, 2016 - Accepted April 28th, 2016 Keywords Disease Management; Health; Home Care Services, Hospital-Based; Pancreatitis, Chronic; Primary Health Care Abbreviations GP general practitioner Correspondence Hazel M Ní Chonchubhair The University of Dublin, Trinity College Department of Surgery, Room 1.29 Trinity Centre for Health Sciences, Tallaght Hospital, Dublin 24 Phone +01-8964173 Fax +01-8963788 E-mail nichonh@tcd.ie Chronic Pancreatitis in Primary and Hospital Based Care in Ireland: The Management of an Orphan Disease Hazel M Ní Chonchubhair¹, Brendan O'Shea², Dara O Kavanagh³, Barbara M Ryan⁴, Sinead N Duggan¹, Kevin C Conlon¹ Professorial Surgical Unit, Departments of ¹Surgery and ²Public Health and Primary Care, The University of Dublin Trinity College, Tallaght Hospital, Dublin 24, Ireland Departments of ³Surgery and ⁴Gastroenterology, Tallaght Hospital, Dublin 24, Ireland INTRODUCTION Chronic pancreatitis is a chronic inflammatory, fibrotic disease, characterised by irreversible morphological change of the pancreas, and typically causes pain and / or permanent loss of function [1]. There is progressive destruction of the acinar and islet cells, formation of scar tissue, calcification and resultant deterioration of exocrine and endocrine pancreatic function. Alcohol-related pathology is the predominant aetiology worldwide, especially in Western countries. However, not all patients who abuse alcohol develop chronic pancreatitis, and one study showed that this may be as low as 3% [2]. Other aetiologies include gene mutations, hyperlipidaemia, ductal obstruction, cystic fibrosis, tropical and hypercalcaemia, while some are ‘idiopathic’. The natural history of the disease is characterised by intractable pain, malabsorption, malnutrition, periods of symptomatic flare- ups and intermittent remission, and the development of complications including type 3c diabetes and osteoporosis [3, 4]. Chronic diseases result in decreased quality of life, increased morbidity, higher mortality, and constitute a significant resource burden. In Ireland, as in other countries, chronic diseases constitute a sizeable percentage of healthcare service activity and budgetary expenditure. According to Balanda et al. [5], between 2007 and 2020 the number of chronic conditions will rise substantially and the number of adults affected will increase by approximately 40% in Ireland. For chronic pancreatitis in particular, reasons for the significant healthcare burden are many; recurrent hospitalisation, repeated primary care visits, management of exocrine/endocrine impairment, malnutrition, chronic pain treatment, management of multi-morbidities and complications. The presence of chronic, intractable pain is a particular problem, the pathophysiology of which is incompletely understood. Pain ranges from mild, sporadic episodes to intractable pain requiring regular use of opioid analgesia. Patients experience significant socioeconomic burden. Issues of concern include difficulty in maintaining employment [6],