173 Summary 9 In chapter 4 the construct validity, reliability and responsiveness of the Otology Questionnaire Amsterdam were examined. The construct validity was described as performed in de development study. A new cohort of 194 patients visiting the ENT surgeons were recruited for the assessment of the responsiveness. A second prospective cohort of 50 consecutive patients undergoing ear surgery was recruited surgery for test-retest reliability of the OQUA. Additionally, a scoring system was developed to calculate subscale scores for all 8 ear complaints and impact of these complaints on Quality of Life. It is our belief that, although “most PROMs are questionnaires, not all questionnaires are PROMs.“ This statement underlines the importance of including the patient in the developmental process of a PROM. How can you be sure that all relevant aspects are included if the questionnaire is based on the opinion of non-patients? In chapter 5, after repeating the search in chapter 2, a quality assessment of these patient-reported outcome measures in otology for patients with multiple ear complaints is described. The ‘Consensus-based standards for the selection of health measurement Instruments’ (COSMIN) checklists were used to evaluate the quality of the questionnaire. The worst item score per aspect of the methodological assessment counted. Twelve multiple complaint questionnaires were included in the study for quality assessment. Most multiple complaint questionnaires lacked good design with concept elicitation and patient involvement. Modifications of earlier versions of PROMS or combinations of multiple questionnaires lead to ongoing (cross-cultural) validation of these questionnaires albeit the mediocre design and validation supporting our work on the OQUA. Chapter 6 describes the process of gathering insight in ear complaints in the general population in the Netherlands using the OQUA and with this define de normative data of the OQUA. A sample of 500 adults, without recent visit the an ENT surgeon, medical history of eardisease of previous earurgery, was drawn from a large panel of a Dutch research agency. This group was stratified on categorized age groups and gender. Data from 496 participants was used to calculare the relevant percentiles for all OQUA subscales. The 95th percentile of the distribution of scores in the normal population was taken as the threshold between a normal and abnormal score. These data can be valuable in a shared decision-making consultation, providing better understanding of the patient’s ear complaints as compared to the general population. After development and interpretation, it was and still is important to get the OQUA implemented in as part of standard care. Through proper ongoing implementation
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