The Quality of Survival (QoS) Group was formed in 2006.
The QoS Group is a multi-disciplinary group set up to improve awareness and monitoring of quality of survival issues, including endocrine, quality of life, adaptive functioning, emotional, behavioural, cognitive and developmental consequences of brain tumours in childhood. The group provides a platform for all disciplines to discuss common QoS issues.
The QoS group meets once a year and is open to anyone with a special interest in QoS and is willing to get involved in QoS assessment in clinical trials across Europe. Interim telephone conferences are organized during the year if needed. Our membership currently includes individuals from the following disciplines: oncology, rehabilitation medicine, neuropsychology, endocrinology, neurology, clinical psychology, and nursing. Representatives from tumour-specific groups are encouraged to attend all QoS meetings and to liaise with the QoS group between meetings when developing trial protocols.
The role of the QoS group includes supporting tumour-specific trial groups in developing protocols that facilitate comparison of data from different countries. Our aim is to ensure that we can draw robust conclusions regarding QoS for different treatment regimens and tumour types. At our yearly meeting there is an opportunity to review data collected on previous and ongoing trials to ensure that future protocols are responsive to any emerging evidence.
The QoS group have recently published a position paper regarding data collection for children 5 years and over (http://dx.doi.org/10.1016/j.ejpn.2014.12.003). A similar paper for children under the age of 5 years is currently in preparation.
Further work streams are focused on developing standardised methods for data recording and evaluation of QoS elements of brain tumour clinical trial protocols.
The QoS group is currently chaired by Anita Puhr, Thomas Traunwieser and Katrin Scheinemann.