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

Autor: de Rooij BH; Department of Research and Development, Netherlands Comprehensive Cancer Organization, Utrecht, the Netherlands; Department of Medical and Clinical Psychology, Center of Research on Psychological and Somatic Disorders (CoRPS), Tilburg University, Tilburg, the Netherlands. Electronic address: b.derooij@iknl.nl., van den Hurk C; Department of Research and Development, Netherlands Comprehensive Cancer Organization, Utrecht, the Netherlands., Smaardijk V; Department of Research and Development, Netherlands Comprehensive Cancer Organization, Utrecht, the Netherlands., Fernandez-Ortega P; Department of Nursing Research, the Catalan Institute of Oncology - Cancer Centre at Barcelona, Spain., Navarro-Martin A; Thoracic Lung Tumors Unit. Radiation Oncologist. Catalan Institute of Oncology. Duran i Reynals Hospital, Barcelona, Spain., Barberio L; Patients Organization Longkanker Nederland, Utrecht, the Netherlands., Guckenberger M; Department of Radiation Oncology, University Hospital Zurich, University of Zurich, Zurich, Switzerland., Schmid S; Department of Thoracic Surgery, Medical Center - University of Freiburg, Freiburg, Germany., Walraven I; Department for Health Evidence, Radboudumc, the Netherlands., Vallow S; Novartis Pharmaceuticals Corporation, East Hanover, NJ, United States., Kotsi C; Novartis Pharma AG, Switzerland., Preusser M; Department of Medicine I, Division of Oncology, Medical University of Vienna, Vienna, Austria., Mosor E; Section for Outcomes Research, Center for Medical Statistics, Informatics and Intelligent Systems, Medical University of Vienna, Vienna, Austria., Klok JM; Pulmonary Department of Erasmus Medical Center, Rotterdam, the Netherlands., Becker A; Pulmonary Department of Amsterdam Academic Medical Center, Amsterdam, the Netherlands., Milani A; European Institute of Oncology, Milan, Italy., Ninov L; European Patients' Forum, Brussels, Belgium., van de Poll-Franse LV; Department of Research and Development, Netherlands Comprehensive Cancer Organization, Utrecht, the Netherlands; Department of Medical and Clinical Psychology, Center of Research on Psychological and Somatic Disorders (CoRPS), Tilburg University, Tilburg, the Netherlands; Department of Psychosocial Research, Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, the Netherlands.
Jazyk: angličtina
Zdroj: Lung cancer (Amsterdam, Netherlands) [Lung Cancer] 2022 Nov; Vol. 173, pp. 5-13. Date of Electronic Publication: 2022 Sep 05.
DOI: 10.1016/j.lungcan.2022.08.021
Abstrakt: Background: In 2016, the International Consortium for Health Outcomes Measurement (ICHOM) defined an international consensus recommendation of the most important outcomes for lung cancer patients. 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 health-care.
Material and Methods: An international, expert team of patient representatives, multidisciplinary healthcare professionals, academic researchers and pharmaceutical industry representatives (n = 17) reviewed potential outcomes generated through 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 expert multidisciplinary 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. The final lung cancer COS includes: 1) case-mix factors (n = 27); 2) PROs related to health-related quality of life (HRQoL) (n = 25); 3) clinical outcomes (n = 12). Patient-reported symptoms beyond domains included in the ICHOM lung cancer set in 2016 were insomnia, nausea, vomiting, anxiety, depression, lack of appetite, gastric problems, constipation, diarrhoea, dysphagia, and haemoptysis.
Conclusions: We will implement the lung cancer COS in Europe within the H2O initiative by collecting the outcomes through a combination of clinician-reported measures and PRO measures. The COS will support the adoption and reporting of lung cancer measures in a standardized way across Europe and empower patients with lung cancer to better manage their health care.
(Copyright © 2022 The Authors. Published by Elsevier B.V. All rights reserved.)
Databáze: MEDLINE
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