Quality improvement in the care of patients with inflammatory bowel disease: A study with special reference to patients’ experiences, clinical redesign and performance measurements in a population-based setting

A range of studies have supported the existence of a gap between what medicine could possibly deliver and what it actually does deliver. This is also true for the delivery of care to patients with inflammatory bowel disease (IBD) and several international stakeholders have called for action. The aim of this thesis was to describe, study and evaluate a quality improvement intervention (QII) in the care for patients with IBD in a population-based setting, with special reference to clinical redesign, performance measurement and patient experience. The patient population on which this thesis is based was recruited from the gastroenterological unit at the Department of Internal Medicine, Highland Hospital, in Eksjö, Sweden. The QII was implemented through iterative improvement cycles in the early years of the 21 century. Data from yearly check-ups of patients including identification, gender, disease duration, medication, four questions about quality of life (QoL) and laboratory results were entered into a local register created as part of the QII. In addition, data on admittances to hospital were retrieved. The interactions between staff and patients as well as the elements of the delivered care were analysed by applying the model of clinical microsystems (CMS) and the Chronic Care Model (CCM). The QII was studied using a retrospective, descriptive analysis with quantitative elements. A multidimensional quality tool, the Clinical Value Compass (CVC), was applied to assess the quality of care. Later, the CVC and the quality model by Donabedian (Df) were merged to create a quality framework for IBD, which was tested on already existing data in the local IBD register. In a study of patients’ experiences of living with IBD, a content analysis was applied to interviews with 20 purposefully sampled patients. The main components of the redesign, described as a “patientand demand-directed care”, were: A specialist nurse staffed the outpatient clinic full time and could offer patients who contacted the clinic an acute visit at the outpatient clinic within two days. Yearly checkups to either the nurse or physician were offered, either as telephone calls or as traditional visits to the clinic. A letter preceded the contact and included a QoL questionnaire and instructions for laboratory testing of haemoglobin (Hb). The QII led to decreasing numbers of hospitalizations compared to national data and better access to care. The prevalence of anaemia in the population was 6% and was correlated to a risk of being admitted to hospital during the year. The analysis of the interviews showed several parallels to the experiences of