Introduction Narcotic bowel syndrome (NBS) is characterised by chronic abdominal pain that worsens or fails to respond to increasing opioid doses. Limited benefit and harmful effects of long-term opiates, with resultant morbidity, mortality and healthcare use are well documented. We aimed to evaluate current UK clinical practice and services for diagnosis and management of NBS.
Method A 27 item electronic questionnaire (surveymonkey) was developed to establish clinicians’ perspectives on demographics, clinical phenotype and management of NBS patients. After a regional pilot study this was circulated nationally via the BSG.
Results 47 responses were received (96% gastroenterologists, 57% at teaching hospitals (TH), 30% at district general hospitals (DGH)) with almost all respondents (94%) having made a prior NBS diagnosis.
Demographics Reported NBS prevalence was low (57% of clinicians with <5 cases/year). Patients were described as mostly female (76%), aged 21–40 (88%).
Diagnosis The most popular criteria used to make a NBS diagnosis were ‘chronic abdominal pain’ (91%) and ‘long term opiate use’ (91%), whereas presence of a ‘soar and crash response’ (34%) and ‘pain that is progressing over time’ (30%) were least frequently used. Only 3/47 (6%) respondents use Rome IV criteria.
Management 70% offer opiate withdrawal as either inpatient or outpatient. Surprisingly, only 51% prescribe non-opioid analgesia in NBS. Of these Amitriptyline (64%), Gabapentin (55%) and Pregabalin (53%) were reported to be the most useful. Clinicians at TH were more likely to prescribe non-opioid analgesia than at DGH (p=0.006). Up to 1/4 of NBS patients require nutritional support according to a majority (62%) of respondents. The most common form of nutritional support was oral (83%), then nasogastric (45%) and jejunal tube (43%). 33% had used parenteral nutrition in a NBS patient.
Referral to additional services: 77% refer to a chronic pain team, 36% to clinical psychology and 21% to tertiary services. In most centres (87%) there is no designated service to manage NBS and no access to clinical psychology (56%). In centres without access to NBS services, 76% believed their hospital would benefit from the development of a service.
Conclusion This survey has identified wide variation in clinical practice when diagnosing and managing NBS, and a national demand for improving and developing access to specialist services in the UK.
Disclosure of Interest None Declared