From a patient perspective, what is the current impact of lung cancer and the (new) treatments against it? And how can you capture this and use it in combination with clinical data to implement value-driven care? Belle de Rooij and her colleagues investigated this in the European Health Outcomes Observatory (H2O) project. This was set up to develop a new patient-oriented core outcome set (COS) for lung cancer. That set contains a combination of patient-reported outcomes (PRO) and clinical data. It is an update of the previous recommendation of the International Consortium for Health Outcomes Measurement (ICHOM) from 2016. An update was necessary because the impact of new treatments such as immunotherapy and targeted therapy had not yet been taken into account.
International multidisciplinary team of experts
An international multidisciplinary team first conducted a literature search on the important outcomes for lung cancer and drew up a preliminary list of results. Subsequently, an even broader group of patients and patient representatives (n = 31), healthcare professionals and academic researchers (n = 83), representatives of the pharmaceutical industry (n = 26) and representatives of health authorities (n = 6) participated in a so-called Delphi -research. In two survey rounds, the participants scored the relevance of the results from the literature review to a list of important outcomes of care. The cut-off value for consensus was that ≥ 70% of the participants rated an outcome as ‘very relevant’. In the consensus meeting it was then decided to weigh the scores of patients more heavily. During consensus meetings, the multidisciplinary team finalized the patient-centered outcome set (COS).
Added patient-reported symptoms
The final lung cancer COS includes 27 so-called case-mix factors (characteristics of the patient and/or his disease, such as age, weight and stage of the disease) and a further 25 patient-reported outcomes focusing on quality of life and 12 clinical outcomes . The patient-reported symptoms included in the set that were previously not included in the 2016 ICHOM lung cancer set were insomnia, nausea, vomiting, anxiety, depression, loss of appetite, stomach problems, constipation, diarrhea, difficulty swallowing, and coughing up. blood.
Lung cancer set within Europe
The lung cancer COS is implemented in Europe by the H2O project. The set supports the implementation of value-driven lung cancer care in a standardized way across Europe and enables patients with lung cancer to better manage their health together with their healthcare professionals and to enable collaborative decision-making.
Collaborations and implementation in the Netherlands
In the Netherlands, cooperation has been sought with the Outcome-Oriented Care program of the National Health Care Institute to coordinate the lung cancer outcome set that they recommend at a national level and the international H2O set. As part of the project, this will be the first to be implemented within the Erasmus Medical Center. The Lung Cancer Netherlands patient organization was involved in all stages of the development of the H2O outcome set and is also involved in the implementation of the set.
It is great to see that the H2O lung cancer set can be implemented immediately in the Netherlands thanks to collaborations with existing initiatives. In this way we will soon be able to make a very nice international comparison of patient-oriented lung cancer data with other countries that are affiliated with the European H2O project, says De Rooij.
- de Rooij BH, 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 JM, Becker A, Milani A, Ninov L, from the Poll-French LV Development of an updated, standardized, patient-centered outcome set for lung cancer.Lung Cancer. 2022 Sep 5;173:5-13. doi: 10.116/j.lungcan.2022.08.021.