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Cholesteatoma is a rare disease, but if left untreated it can damage the delicate structures in the inner ear that are important for hearing and balance. Studies have been performed on cholesteatoma, but there are no national or international guidelines for registration of pathology, surgery or follow-up. Because uniformity of registrations is lacking, it is difficult to compare the outcomes of cholesteatoma treatment. A classification system that enables uniform registration of cholesteatoma pathology, surgery and outcome is necessary to share findings and compare outcomes. Besides this, there is a shift towards patient centered care, which makes the demand of collecting patient reported outcome measures via questionnaires more important. This thesis describes methods used in this study to work towards an uniform registration in cholesteatoma care, while taking PROMs and electronic medical record (EMR) data into account. Chapter 2 includes a comparison between the two most recent cholesteatoma classification systems STAMCO and ChOLE. This was performed via scoring by raters of all surgical reports with both classification systems for localization/extension of cholesteatoma, complication status and ossicular chain status. In Chapter 4 the patient reported complaints, reported post-operative hearing ability and impact over time were longitudinally assessed. These patient reported outcomes were obtained via surveys that were sent out once a year postoperatively for a period of 2 years. These patient reported outcomes were analyzed using linear mixed models. Chapter 5 describes the study performed to determine the relationship between the ossicular chain status both prior to cholesteatoma removal and before Ossicular Chain Reconstruction (OCR), with the postoperative hearing for both the STAMCO and ChOLE classification. Next to this, the effects of the different OCR procedures used in daily practice were assessed. This was performed by analyzing the differences in the postoperative air-bone gap between the different ossicular chain status (number of affected ossicles), classified according to the STAMCO and ChOLE system by means of Kruskal-Wallis tests. Lastly, staged reconstruction was compared to primary reconstruction. In Chapter 6 the Delphi method to coordinate and align the content for registration of cholesteatoma care in The Netherlands is described. Three outcome measures were obtained: 1) the presence or absence of a cholesteatoma in the first 5 years after surgical removal of cholesteatoma, 2) hearing level after surgical removal of cholesteatoma, and 3) the documented assessment of patient’s complaints with a validated patient reported outcome measures questionnaire (PROM). |
