What are we going to do with you? Gastroenterology service providers' perceptions of 'difficult to manage' IBD patients

Abstract

Background: This paper reports the results of a systematic survey of members of a clinical gastroenterology service to determine their perceptions of patients with inflammatory bowel disease (IBD) who were deemed to function poorly and were difficult to manage clinically. Objectives: To assess objectively the defining characteristics of this perceived subgroup of patients who are encountered in virtually all gastroenterology services. Methods: A sample of gastroenterologists and gastrointestinal surgeons (n=10), as well as gastrointestinal nurses (n=19), was surveyed regarding their beliefs about the characteristics of patients with IBD who they judged to be extremely 'difficult to manage'. A survey was developed to assess patient characteristics (e.g., symptom presentation, narcotic over-reliance, interpersonal behaviour and illness behaviour) and the emotional impact that this perceived patient group has on individual staff members as well as on the functioning of the gastrointestinal team. Results: The data indicated that patients with IBD who were perceived to be poorly functioning were viewed to have high levels of dysfunctional behaviour. In particular, negative behaviours (e.g, manipulative interpersonal behaviours and excessive illness behaviours) were noted. Not only were these categories of behaviours high in frequency, but survey participants also rated these categories of behaviour to be highly distinct from those of typical patients with IBD. Moreover, this perceived patient group was reported to have a negative impact on individual staff and on the gastrointestinal team, and participants confirmed that they experience significant frustration and hostility when they work with these patients. Conclusions: These data, if replicated, confirm the general clinical opinion that a small subgroup of 'difficult to manage' and poorly functioning patients with IBD exists. These patients appear to differ from typical patients with IBD in interpersonal characteristics more than in medical characteristics. If follow-up research, which is currently underway by the authors' group, shows that groups of poorly functioning gastrointestinal patients and typical gastrointestinal patients actually differ in measures of illness behaviour, then novel treatment approaches to improve the clinical services that are provided to these patients can be developed.