11 General introduction 2. Patient Reported Outcome Measures Common elements of providing PCC are to incorporate and respond to patient and families preferences, needs, and values (NEJM common element 4 and 6) and to also focus on emotional well-being (NEJM common element 3) [2,28]. Patient Reported Outcome Measures can be used to elicit information regarding the perceived impact of disease and/or treatment directly from the patients themselves and from their family members [28,29]. PROMs are thus useful to incorporate the patient perspective into decision-making in clinical care and are therefore seen as an effective way to provide PCC [28,29]. PROMs are standardized, validated questionnaires completed by patients regarding their health status, symptoms, or well-being [30-32]. PROMs can be disease-specific (i.e., applicable for patients with a specific disease) or generic (i.e., applicable for everyone, regardless of disease) and are available for different age-ranges [33]. PROMs can be used for several purposes. Originally, PROMs were developed for use in scientific research to measure the effect of healthcare interventions [34]. However, PROMs can also be used for quality registration of care, where aggregated PROM data is used to gain insight into the quality of care and opportunities for quality improvement [35]. Additionally, PROMs can be used on an individual level in clinical care enabling PCC [36]. The effects of using PROMs in clinical care have been widely studied. These studies showed that using PROMs increases awareness for patients’ problems and concerns, enhances patient-clinician communication, improves patient satisfaction with health care and is associated with improved treatment outcomes [28,37-42]. Given the added value of PROMs, it is beneficial for PCC to implement PROMs in clinical practice. Currently, there is a wide variety in how PROMs are implemented, which impacts the intended effects [43]. For example, PROMs are used in clinical practice to monitor symptoms, make diagnoses, decide whether patients’ needs an outpatient visit or to facilitate the communication between patients and clinicians [36,44]. The focus of this thesis is on the implementation of PROMs as part of the conversation with the clinician. There are several initiatives that provide guidelines about PROM implementation, such as the International Society for Quality of Life Research (ISOQOL) User’s Guide to implementing patient-reported outcomes in clinical practice [45] and the PROM-toolbox, developed by the Dutch National Healthcare Institute [46]. 1
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