Patients’ perceptions of quality of care and follow-up in inflammatory bowel disease

ABSTRACT

Background and aims Quality of care (QoC) has gained increased attention in IBD. A better QoC has, historically, been linked to improved treatment outcomes. Even so, factors of equal importance to patients may be quality of life (QoL), patient–physician communication and access to care. Recent surveys suggest that IBD care in Europe is suboptimal. Methods Patients were recruited from nine hospitals in the south-eastern and western part of Norway as a part of an observational, multicenter study In addition to clinical and socio-demographic factors; a purposely designed 26 item questionnaire was used to quantify aspects related to IBD care, including QoC. Moreover, the Fatigue Questionnaire (FQ) was used to investigate fatigue. Results In total, 411 patients were included. Of these, 231 were diagnosed with CD and 180 with UC. Furthermore, 86.1% (354/411) were satisfied with the quality of IBD follow-up and only 4.1% (17/411) were dissatisfied. Most dissatisfaction was related to: lack of focus on personal relations (18.2%), HRQoL (15.1%), general practitioner knowledge of IBD (13.9%), ability to talk about important topics (7.8%), and hospital discharge communication (9.4%). Higher age and longer disease duration was associated with improved QoC scores in both UC and CD. Fatigue was associated with decreased QoC scores in both diagnoses. Conclusions Patients are satisfied with quality of care in IBD. However, communication seems to be an important area of improvement – not only related to patient–physician communication, but also to transitional communication between different health-care levels.

KEYWORDS:

• Inflammatory bowel disease
• patient centredness
• quality of care

Acknowledgements

The authors would like to thank MD, PhD Tore Grimstad, MD PhD Magne Henriksen, MD Roald Torp, Professor MD, PhD Jørgen Jahnsen, Associate professor PhD Randi Opheim, RN Gunnhild Seim, RN Turid Bua, RN Monica Tranvåg, RN Wenche Brattebø Fenne, RN Janna Kyllingstad, RN Elisabeth Finnes, RN Ragnhild Husom, and RN Eva Jensen for invaluable help during inclusion and data gathering.

Declaration of interest

This work was supported by Østfold Hospital Trust, Østfold University College and an unrestricted grant by Tillotts Pharma.