Development of a validated benchmarking metric for quality of life among cancer patients and survivors

​In January 2023, the four-year European Union (EU) [Grant N.101096362] research project EUonQoL (coordinated by Istituto Nazionale dei Tumori, Italy) was initiated. The project intends to develop, pilot, and validate a Kit (EUonQoL-Kit) that can be utilized as a benchmarker measure to assess cancer patients' quality of life (QoL) and contribute to the EU's Mission on Cancer. The Kit will be built with patients for patients, administered online, and available in the 27 EU countries and the associated countries' languages.​

While the negative impact of cancer on QoL is well known, previous clinical trials have reported positive results on the patient's well-being when using routine QoL assessment [1-3]. However, systematic integration of QoL evaluation into routine oncology practice is not part of the standard of care, nor do healthcare systems and cancer control programs use QoL measurements when developing clinical, social, and healthcare policymaking systems. If healthcare systems are to adequately address cancer patients' preferences, their unmet needs, and how these are associated with their aspects of QoL, there is a need to design a kit that can evaluate cancer patients' health-related QoL regardless of their background. Developing a kit for universal QoL metric for cancer patients may help regulators, institutions, labor markets, and social protection officials to weigh the risks and benefits of new health and labor policies. In turn, this can generate more effective and less burdensome treatments and better supportive care, benefiting cancer patients and survivors and enhancing their QoL. ​​

The EUonQoL project will apply a methodology where representatives of people with cancer, healthcare providers, administrators, policymakers, and citizens are included as co-designers. The project will be conducted in three phases. The first phase of the project will involve identifying gaps by assessing and analyzing current QoL tools and data, developing a culturally adjusted EUonQoL-Kit, and preparing digital instruments for data collection. The second phase comprises the validation of the EUonQoL-Kit in a pan-European pilot survey and analyzing QoL-related parameters. The third phase involves promoting strategies to spread the use of the EUonQoL-Kit for future evaluation of cancer patients' needs and tracking the results of European policy interventions. By the end of the project, there will be a unified consensus on which patient-reported outcome measure should be used for assessing QoL in cancer patients at various stages of their disease trajectory. 

Oslo University Hospital (OUS) is participating in this project and will create an implementation guideline on the application of the validated benchmarking QoL metric across Europe. In order to successfully provide an implementation guideline (supported by implementation science theories) that is adjusted for the different included European countries, OUS will form an expert network that will provide insight and assist in evaluating the implementation guideline prototype. 

Details about the EUonQoL project can be found here.

1. Basch E, Deal AM, Kris MG, Scher HI, Hudis CA, Sabbatini P, et al. Symptom Monitoring With Patient-Reported Outcomes During Routine Cancer Treatment: A Randomized Controlled Trial. J Clin Oncol. 2016;34(6):557-65.

2. Bottomley A. The cancer patient and quality of life. Oncologist. 2002;7(2):120-5.

3. Wu M, Zhao Q, Chen Y, Fu C, Xu B. Quality of life and its association with direct medical costs for COPD in urban China. Health Qual Life Outcomes. 2015;13:57.

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