Development of an updated, standardized, patient-centered outcome set for lung cancer Article Swipe

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Lung cancer Outcome (game theory) Medicine Set (abstract data type) Oncology Intensive care medicine Medical physics Internal medicine Computer science Mathematics Programming language Mathematical economics

Belle de Rooij , Corina van den Hurk , Veerle Smaardijk , Paz M. Fernandez-Ortega , Arturo Navarro-Martín , Lidia Barberio , Matthias Gückenberger , Severin Schmid , Iris Walraven , Susan Vallow , Christina Kotsi , Matthias Preusser , Erika Mosor , Jente Klok , Annemarie Becker , Alessandra Milani , Lyudmil Ninov , Lonneke V. van de Poll‐Franse ·

YOU? · · 2022 · Open Access · · DOI: https://doi.org/10.5281/zenodo.6645769 · OA: W4320559472

Abstract Background: The European Health Outcomes Observatory (H2O) initiative aimed to develop an updated patient-centered core outcome set (COS) for lung cancer, to capture the patient perspective of the impact of lung cancer and (novel) treatments using a combination of patient-reported outcome (PRO) instruments and clinical data as a means to drive value-based healthcare. Material and methods: An international, multidisciplinary expert team (n=17) reviewed potential outcomes generated through a literature review. A broader group of patients/patient representatives (n=31), healthcare professionals / academic researchers (n=83), pharmaceutical industry representatives (n=26), and health authority representatives (n=6) participated in a Delphi study. In two survey rounds, participants scored the relevance of outcomes from a preliminary list. The threshold for consensus was defined as ≥70% of participants scoring an outcome as ‘highly relevant’. In concluding consensus-meeting rounds, the multidisciplinary expert team finalized the COS. Results: The preliminary list defined by the core group consisted of 102 outcomes and was prioritized in the Delphi procedure to 64 items. The final lung cancer COS includes: 1) case-mix factors (n=27); 2) PROs related to health-related quality of life (HRQoL) (n=26); 3) clinical outcomes (n=11). Patient-reported symptoms not included in the 2016 ICHOM lung cancer set were insomnia, nausea, vomiting, anxiety, depression, lack of appetite, gastric problems, constipation, diarrhoea, dysphagia, and haemoptysis. Conclusions: The COS will support the adoption and reporting of lung cancer clinician-reported measures and PRO measures, in a standardized way across Europe and empower patients with lung cancer to better manage their health care.