125 Patient’s and parents’ perspective on PROM implementation Introduction Patient Reported Outcome Measures (PROMs) are increasingly used to monitor and discuss symptoms, Health-Related Quality of Life (HRQOL) and psychosocial functioning of patients in the consultation room with the ultimate goal to enable shared-decision making and patient-centered care [1-3]. Using PROMs in clinical practice has been shown valuable, as it results in more awareness for and increased discussion of patient concerns, higher patient satisfaction, better communication between patient and clinician, and improved treatment outcomes [4-9]. A system that facilitates the use of PROMs in clinical practice is the evidence-based KLIK PROM portal (www.hetklikt.nu) [10-13], which has been implemented in over 20 hospitals in the Netherlands since 2011 [14]. With KLIK, pediatric patients and/or their parents, and adult patients complete PROMs before the outpatient consultation. Answers are converted into an electronic KLIK PROfile (KLIK ePROfile) which the clinician discusses with patients and parents during the consultation [14]. The most important stakeholders in the development and implementation process of the KLIK PROM portal are the users; clinicians as well as patients/parents. From the onset of KLIK, clinicians’ opinions were asked during these processes. For example, clinicians’ preferences for PROM feedback options in the KLIK ePROfile were studied [10], clinicians were involved in the selection of PROs and PROMs for their disease group, and they were consulted in annual evaluation meetings to identify and overcome barriers in the implementation process [14]. Two studies were performed to gain more insight into the experiences of clinicians with KLIK and to identify barriers in the implementation process, with the goal to improve the KLIK PROM portal according to their needs [15, 16]. However, the opinion of the other stakeholder, patient/parents, is also important [17], as engaging patients in KLIK could result in higher patient satisfaction and higher enrollment rates [18-21]. Worldwide, patients are increasingly engaged in PROM development (e.g., item development, comprehensibility) [22] and PROM visualization to patients and clinicians [23]. However, the experiences of patients regarding the use of PROMs in daily clinical practice has received less consideration [24-31]. Available studies explored the experiences of adult patients regarding the use of PROMs in daily clinical practice. Both positive (e.g., improved communication, insight into patient’s functioning, and increased awareness of psychosocial problems) [25, 26, 28-31] and negative experiences (e.g., negative and irrelevant questions in PROMs, unclear purpose of using PROMs) [25-27] were identified. To our knowledge, no studies 5
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