Danique Heuvelings

74 Chapter 3 reached consensus among experts, was aligned with patients’ feedback regarding the need for better supporting patients affected by long-term sequelae of AL. Widespread adoption of the CoReAL framework holds the potential to standardize and destigmatize the reporting of AL. By providing a clear and consistent methodology, the framework can enhance the quality of AL-related research and clinical care. This standardization will help ensure that data collected across different studies and clinical settings are comparable and reliable, facilitating better comparison of trials and meta-analyses. Additionally, standardized reporting can help demystify AL for patients, providing them with clearer information about their prognosis and long-term impact of their condition. The framework could also serve as a model for clinical trials employing AL as a clinical endpoint, as well as for benchmarking surgical outcomes and postoperative complications at the institutional level. This consensus project and its outcomes should still be considered in the context of certain limitations. Although we included an international cohort of experts, our sampling did not encompass all regions of the world, notably South America, and most of Asia and Africa were not represented. This geographic gap may limit the generalizability of our findings. To address this shortcoming, we plan to include these regions in the upcoming implementation phase. Our patient cohort consisted of 10 individuals, and while their diversity was ensured by using a maximum variation sampling strategy, this sample size may not encompass the full spectrum of factors meaningful to patients. Because of the paucity of evidence for some topics, evidence-based statements were primarily based on a moderate-to-low level of evidence. A substantial challenge lies in the large number of reporting elements proposed and their integration into the clinical workflow. Questions arise regarding who will input data, at which timepoints, and the resources required for this reporting. Specifically, capturing longterm oncologic and QoL outcomes is difficult to operationalize, even at the 1-year timepoint, given loss to follow-up and resource constraints. It is also crucial to acknowledge that some reporting elements included in the framework lacked evidence, which may hinder broad acceptance and implementation. The next phase of the CoReAL project will solicit stakeholder feedback and address perceived challenges to implementation to improve the feasibility and utility of the reporting framework in clinical practice. Currently, the framework is undergoing evaluation by the ASCRS membership and other collaborating societies to gauge agreement with the reporting elements and potential adoption in the clinical setting. The research team is conducting semistructured interviews with surgeons, residents and nurses in focus groups to evaluate for the likelihood of adoption and compliance with the current version of the CoReAL framework. Factors that may contribute to poor adoption will be explored. Further work is needed to evaluate the utility of the reporting framework using real-world clinical datasets, as well as the feasibility of data collection through electronic health records.

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