Loading...
Development of an updated, standardized, patient-centered outcome set for lung cancer
De Rooij,Belle H. Van Den Hurk,Corina Smaardijk,Veerle Fernandez-ortega,Paz Navarro-martin,Arturo Barberio,Lidia Guckenberger,Matthias Schmid,Severin Walraven,Iris Vallow,Susan
De Rooij,Belle H.
Van Den Hurk,Corina
Smaardijk,Veerle
Fernandez-ortega,Paz
Navarro-martin,Arturo
Barberio,Lidia
Guckenberger,Matthias
Schmid,Severin
Walraven,Iris
Vallow,Susan
Abstract
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.
Description
H2O has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 945345-2. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme, EFPIA, Trial Nation and JDRF. The public grant funding is matched with in-kind contributions of EFPIA partners. CH has received Institutional funding for implementation of symptom monitoring in lung cancer from AstraZeneca, etc.
Date
2022
Journal Title
Journal ISSN
Volume Title
Publisher
Research Projects
Organizational Units
Journal Issue
Keywords
Core outcome set, Lung cancer, Patient -reported outcomes, Quality of life, SURVIVAL, TRENDS, Value -based healthcare, SDG 3 - Good Health and Well-being
Citation
De Rooij, B H, Van Den Hurk, C, Smaardijk, V, Fernandez-ortega, P, Navarro-martin, A, Barberio, L, Guckenberger, M, Schmid, S, Walraven, I, Vallow, S, Kotsi, C, Preusser, M, Mosor, E, Klok, J M, Becker, A, Milani, A, Ninov, L & van de Poll-Franse, L V 2022, 'Development of an updated, standardized, patient-centered outcome set for lung cancer', Lung Cancer, vol. 173, pp. 5-13. https://doi.org/10.1016/j.lungcan.2022.08.021
License
info:eu-repo/semantics/openAccess