139 Patient’s and parents’ perspective on PROM implementation Discussion This study provided insight into the experiences of patients and parents with the implementation of PROMs in pediatric clinical practice using the KLIK PROM portal. Overall, patients and parents were satisfied with the use of KLIK. They indicated that KLIK provides insight into the patient’s functioning, helps parents and clinicians in preparing for the consultation, is easy to use, and results in discussion of a broad range of topics (e.g., from disease-specific to psychosocial functioning) during the consultation. However, points of improvement were indicated regarding the content of PROMs, the layout of the KLIK PROM portal, and the discussion of PROMs by the clinician. The results described in this study are in line with previous studies [15, 25, 26]. Although patients and parents responded to the closed question of the evaluation questionnaire that they are generally satisfied with the offered PROMs in KLIK, they mentioned in the focus groups and open-ended questions that the content of PROMs is the most important point of improvement. For example, they indicated that there is repetition in questions, that irrelevant questions are administered, and that the completion time is long, resulting in a burden of completing PROMs. These challenges with PROMs have been mentioned in previous research [16, 35, 36]. To address these challenges, the self-report and proxy-versions of the Patient-Reported Outcomes Measurement Information System (PROMIS®) item banks [37-39] were implemented in the KLIK PROM portal in the past year and are currently used in several clinics [16, 40, 41]. The PROMIS item banks each measure a separate construct that can be administered using Computerized Adaptive Testing (CAT). With CAT, questions are presented to patients based on their previous responses. Hence, patients only have to answer a small number of questions per item bank to obtain a reliable score [42] and have to answer less irrelevant questions. Consequently, the burden of completing PROMs can be reduced. Another difference between the focus groups and the questionnaire was the rating of the ease of use of the KLIK PROM portal. While in the questionnaire the majority of participants indicated that KLIK is easy to use, in the focus groups especially parents had quite some remarks on how the ease of use could be improved. Parents mentioned that an app would be a valuable addition to the KLIK website in order to complete PROMs on your mobile phone. Additionally, they would like an integration of KLIK with the EHR so that appointments are automatically linked to KLIK by which PROMs are directly available. To address these suggestions, we made the KLIK 5
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