160 Chapter 8 numbers should be interpreted within a broader context. The quality and set-up of the analysis are thought to be at least equally important. For example the test-retest period should be shorter than the 3 months as used in the COQOL, as complaints may have shifted or changed significantly over such a time frame.8 Requirements for the design of a “patient-reported outcome” (PROM) have changed over the years, which makes comparison of several older (doctor driven) ‘PROMS’ to newer patient-centred PROMS difficult. Several PROMs in otology have been in use for decades, with some originating over 20 years ago, like the CES.4 The designation “patient-reported outcome” (PROM) seems to be a newer term applied to tools, questionnaires, and inventories that were previously described as assessing symptom severity or health-related quality of life. In many cases, these older instruments were only later recognized as PROMs through attribution by others. The shift in terminology may present challenges when searching for PROMs reflecting true patient perspectives.12 When comparing the development of the OQUA to other PROMs in otology, it is often the case that a substantially larger cohort of patients was involved in the development and validation of the OQUA items (except for the responsiveness). Some other PROMs did incorporate patients in the development, after initial proposal of questions by the doctors or the patient involvement only started in the validation process. Another flaw in the design of a new tool can be combining older questionnaires into a newer PROM. The COMQ-121 the CES13, COMOT1511 and COM-514 were combined to create an initial long list of items for further adjustment and reduction, potentially overlooking the comprehensiveness that should be assessed by the patients in the very beginning of development. In chapter 3 and 4, we outline the design process with significant patient involvement, including in-depth interviews, multiple phases of pilot testing, and a large-scale field test. PROMs completion is not a neutral act of information retrieval, but it can change how patients think about their condition.15 All patients with one or multiple ear complaints in the Amsterdam UMC are invited to fill out the OQUA when they are scheduled for surgery. In the future, if thought to be useful, the OQUA has the potential to be used for every patient visiting the out-patient clinic or at other (longitudinal) moments in time for a specific patient or patient group. Healthcare providers should however be careful in inviting their patients to fill in a questionnaire too often as it will demotivate the patient. On the other hand, too infrequent administration of the questionnaire will not give the optimal insight.16 By administering the OQUA to just before and 3 and 12 months after the surgery, important data is collected without overwhelming patients with PROMs. If connected to random outpatient contacts and by various healthcare providers. (e.g. ENT surgeon, residents, nurses, back-office) it will be harder to use
RkJQdWJsaXNoZXIy MjY0ODMw