Self-management in IBD-patients: perspective of patients and nurses

Abstract

Background: Self-management has taken a more prominent role in the care of Inflammatory Bowel Disease (IBD)-patients. No research has focused on patients’ opinions and expectations regarding self-management and patient and disease characteristics have not been considered. Nurses play an important role in assisting and supporting patients in self-management, but no data is available on their perception of patients’ needs and wishes. Aim: To establish the opinions and expectations of IBD-patients on self-management, and to study whether a relationship exists between these opinions and characteristics of the patient or the individual disease course. Furthermore, this study investigated whether opinions and expectations differed between IBD-patients and IBD-nurses Method: Quantitative cross-sectional study using different validated questionnaires. Questionnaires were completed by 88 IBD-patients and by 38 IBD-nurses in a tertiary hospital in the Netherlands. Results: Self-management was not significantly related to patient or disease characteristics. Self-management options differed between patients and nurses; patients are more willing to perform blood tests at home, keeping their patient record up to date, and measuring trough levels of medication at home. Nurses preferred consultation with IBD-nurse/physician through Skype/Facetime or by using a secured webpage. Also, visiting out-patient clinic; combination online and telephone; and combination telephone and visiting out-patient clinic, differed between patients and nurses. Conclusion: Patient and disease characteristics did not differ between patients who wanted more self-management and patients who did not. Difference in opinions regarding self-management between patients and nurses was found. Recommendations: Further research is necessary to gain more insight into why there are differences between patients who want to participate more in their health care and why other patients do not. Nurses and patients should communicate about the different types of self-management so that it can be tailored to the specific patients’ opinions and expectations.