333 Summary, general discussion and future perspectives the information gathered in chapter 10, it became clear that both emotional and physical factors influenced participants’ well-being and many coping strategies were present during the AL experience. The reported elements of the patients were integrated in the CoReAL framework, described in Chapter 3. Combining our insights on QoL impact and the patient reported factors could be used for the development of a comprehensive patient-reported outcome (PRO) set. PROs are measurements/insights provided by patients about any aspect of their own health status, QoL, or functional status in relation to the healthcare or treatment they have undergone 63, 64. Integrating PROs into clinical practice enables healthcare providers to more accurately evaluate treatment efficacy and customize interventions to meet patients’ individual needs and concerns, thereby enhancing medical outcomes 63. Patient-reported outcome measures (PROMs) serve as instruments or tools utilized to capture these PROs 64. Besides PROMs, patient-reported experiences measures (PREMs) do also exist. Through the use of PREMs, such as satisfaction scales, patients report their experiences, offering valuable insight into their care or the healthcare service they received 64. Both measures can be used in healthcare for different specific purposes, but essentially, they are used to improve the quality of healthcare services, be it at the national level, the institutional level or the individual patient level. The growing international focus on PROMS and PREMS underscores their significance as indicators of patient care quality and safety. Currently, there is no PRO(M) for AL described. Adoption of standard set of (patient reported) outcomes for AL does not exist, but it does for CRC in general. The latter was proposed by the International Consortium for Health Outcomes Measurements (ICHOM) and does also includes QoL assessment 65. According to this consortium, it is recommended to use the EORTC QLQ-C30 tool to capture overall QoL and the -CR29 to capture CRC specific outcomes, with recommendations to administer questionnaires at baseline (prior to surgery), 6 months after surgery, and then annually up to 10 years. Given the considerable variability observed in the reporting and assessment of QoL following AL, it is imperative to adhere more rigorously to this recommendation in order to gain a comprehensive understanding of its impact on AL patients. In the CoReAL reporting framework outlined in chapter 3, we integrated QoL assessment as a component of long-term reporting. We are convinced that adopting a standardized approach to assessing and reporting QoL after AL will enhance our comprehension of the ramifications of this complication and mitigate the uncertainties and points of contention raised in existing evidence (chapter 9). A standardized set of other patient-centered outcomes and measures to inform value-based health care during the experience of an AL can be additionally developed considering the gained knowledge in chapter 10. After conducting the patient interviews, as described in chapter 10, it became clear that a lot of patients who experience AL emphasized the importance of family support. They also highlighted some important elements that are covered within this so-called patientand-family centered care (PFCC) 66. In recent years, there has been a heightened focus on 14
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