Development of an updated, standardized, patient-centered outcome set for lung cancer
Creators
-
Belle de Rooij1
- Corina van den Hurk2
- Veerle Smaardijk2
- Paz M. Fernandez-Ortega3
- Arturo Navarro-Martin3
- Lidia Barberio4
- Matthias Guckenberger5
- Severin Schmid6
- Iris Walraven7
- Susan Vallow8
- Christina Kotsi9
- Matthias Preusser10
- Erika Mosor11
- Jente Klok12
- Annemarie Becker13
- Alessandra Milani14
- Lyudmil Ninov15
- Lonneke V. van de Poll-Franse16
- 1. 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
- 2. Department of Research and Development, Netherlands Comprehensive Cancer Organization, Utrecht, The Netherlands
- 3. Department of Nursing Research, the Catalan Institute of Oncology - Cancer centre at Barcelona
- 4. Patients organization Longkanker Nederland, Utrecht, The Netherlands
- 5. Department of Radiation Oncology, University Hospital Zurich, University of Zurich, Zurich, Switzerland
- 6. Department of Thoracic Surgery, Medical Center - University of Freiburg, Freiburg, Germany
- 7. Department for Health Evidence, Radboudumc, The Netherlands
- 8. Novartis Pharmaceuticals Corporation, East Hanover, NJ
- 9. Novartis Pharma AG, Switzerland
- 10. Department of Medicine I, Division of Oncology, Medical University of Vienna, Vienna, Austria
- 11. Section for Outcomes Research, Center for Medical Statistics, Informatics and Intelligent Systems, Medical University of Vienna, Vienna, Austria
- 12. Pulmonary department of Erasmus Medical Center, Rotterdam, the Netherlands
- 13. Pulmonary department of Amsterdam Academic Medical Center, Amsterdam, the Netherlands
- 14. European Institute of Oncology, Milan, Italy
- 15. European Patients' Forum, Brussels, Belgium
- 16. 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
Description
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.
Files
H2O_Core Outcome Set for Lung Cancer.pdf
Files
(862.3 kB)
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