Abstract
Introduction:
Improved treatment has in some cancer types led to transformation of life-threatening illness into chronic disease. Thus, the years lived with cancer have increased, which, in turn, highlights the need for focus on health related Quality of Life (HR-QoL) issues. Therefore, a Quality of Life Research Center was established in 2017 at the Department of Haematology, Odense University Hospital (QoL Research OUH). The aim is to conduct independent QoL research projects and to assist clinical trials in researching factors affecting HR-QoL.
Materials and methods:
QoL Research OUH offers 1) development of subprotocols (methods, statistics and interpretation of results) for collection of QoL data in clinical trials and 2) management of quantitative (patient reported outcomes (PROs), surveys) and/or qualitative (interviews, participant observations) data collection methods. For each study, a cooperation contract is drawn up, specifying the tasks and obligations of QoL Research OUH, including agreements on financing, affiliation, publishing. QoL Research OUH is a non-profit organization. See more at http://en.ouh.dk/research/quality-of-life-research-center-ouh.
Results:
QoL Research OUH currently manages QoL data collection in five Nordic phase II hematological multi-center clinical trials besides affiliation to the world´s largest nation-wide population-based cohort study on QoL in Danish multiple myeloma patients. Collaboration in three more multicenter clinical trials is in the pipeline.
Conclusions and perspectives
To deliver credible QoL data thorough planning is needed. Thus, a cross-disciplinary and interdisciplinary QoL research center has been established. QoL Research OUH contributes to systematic and evidence-based collection of QoL data through quantitative and qualitative methods. The vision is to collaborate on QoL data within National and International cancer study groups.
Improved treatment has in some cancer types led to transformation of life-threatening illness into chronic disease. Thus, the years lived with cancer have increased, which, in turn, highlights the need for focus on health related Quality of Life (HR-QoL) issues. Therefore, a Quality of Life Research Center was established in 2017 at the Department of Haematology, Odense University Hospital (QoL Research OUH). The aim is to conduct independent QoL research projects and to assist clinical trials in researching factors affecting HR-QoL.
Materials and methods:
QoL Research OUH offers 1) development of subprotocols (methods, statistics and interpretation of results) for collection of QoL data in clinical trials and 2) management of quantitative (patient reported outcomes (PROs), surveys) and/or qualitative (interviews, participant observations) data collection methods. For each study, a cooperation contract is drawn up, specifying the tasks and obligations of QoL Research OUH, including agreements on financing, affiliation, publishing. QoL Research OUH is a non-profit organization. See more at http://en.ouh.dk/research/quality-of-life-research-center-ouh.
Results:
QoL Research OUH currently manages QoL data collection in five Nordic phase II hematological multi-center clinical trials besides affiliation to the world´s largest nation-wide population-based cohort study on QoL in Danish multiple myeloma patients. Collaboration in three more multicenter clinical trials is in the pipeline.
Conclusions and perspectives
To deliver credible QoL data thorough planning is needed. Thus, a cross-disciplinary and interdisciplinary QoL research center has been established. QoL Research OUH contributes to systematic and evidence-based collection of QoL data through quantitative and qualitative methods. The vision is to collaborate on QoL data within National and International cancer study groups.
| Original language | English |
|---|---|
| Publication date | 30. Aug 2018 |
| Publication status | Published - 30. Aug 2018 |