Abstract

Background: Crohn's disease (CD) is a chronic inflammatory bowel disease with significant impact on the perceived quality of life (QoL). The treatment and support of patients with CD is mainly focused on somatic functioning inducing clinical remission. Emotional and social functioning receive less attention, but are important for the perceived QoL. The primary objective of this project was to study the QoL in our cohort of CD patients, with focus on emotional and social functioning. The secondary objectives were to identify patient characteristics associated with poor QoL and to identify if gastroenterologists and nurses discussed emotional and social functioning with their patients. Methods: This was a retrospective cohort study in CD patients (N=348) treated at Rijnstate Hospital Arnhem. These patients were asked to fulfill the Inflammatory Bowel Disease Questionnaire (IBDQ) in 2014. We selected patients with the highest (upper quartile, n=42) and lowest (lower quartile, n=59) scores on emotional and social functioning. These groups were compared on demographical and patient characteristics. All medical charts from the lowest scoring group were analyzed on descriptions of emotional and social functioning and whether interventions like referral to a psychologist were undertaken. Results: Patients in the lowest scoring group had more disease activity, were more often hospitalized and used more anti-TNF medication compared to patients from the highest scoring group (Table 1). The lowest scoring group included more women. Signals of emotional and social (dis)functioning in this group were reported in 35/59 (60%) of the medical charts. Interventions were initiated by gastroenterologist or nurses in 17/59 patients (29%). Conclusions: The QoL in our cohort of CD patients was comparable with other cohorts in the Netherlands. In this cohort we showed that patients with the lowest scores on emotional and social functioning have significant impaired QoL. The patients with the lowest perceived QOL on emotional en social scale, were characterized by female gender, disease activity, hospitalization and anti-TNF use. Although there is general attention to signals of emotional and social dysfunctioning; in 40% of patients this was not recognized. In the 60% of patients in which signals were recognized, interventions were undertaken in only 30%. Further study is needed to identify if more attention for emotional and social functioning and more specific interventions in these domains will actually lead to a better perceived QoL in these patients.

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