In pediatric advanced cancer,i.e.,when cancer-targeted treatments are not effective,care provided to patients is of palliative nature.It aims at limiting symptoms and optimizing quality of life(QoL).To orient care,it ...In pediatric advanced cancer,i.e.,when cancer-targeted treatments are not effective,care provided to patients is of palliative nature.It aims at limiting symptoms and optimizing quality of life(QoL).To orient care,it is necessary to know and measure what is really important for young people.Unfortunately,tools are still scarce in this context.The aim of this paper is to describe the development process of a new QoL assessment method,the Advance QoL program.This is specifically designed for the clinical context of pediatric advanced cancer.Three previous studies carried out by our team identified seven important QoL domains for this population.We developed a tool named Advance QoL—parent/caregiver version.A current study aims to develop self-reported versions of the Advance QoL for children(8-12 years)and adolescents(13-18 years)with advanced cancer.In the very near future,the Advance QoL tool will be available in three versions(parents/caregivers,children,and adolescents)ready to be tested in validation studies.Regular assessment of the QoL of young people with cancer is a central process in defining targets for care and should be carried out throughout the trajectory,including when cancer is at an advanced stage,i.e.,when no standard treatment options are available.展开更多
基金Le programme Advance QoL aétéfinancépar la Fondation du CHU Sainte-Justine,par le Réseau québécois de recherche en soins palliatifs et de fin de vie (RQSPAL,Projet pilote 2018)par la Fondation Coast-to-Coast Canada et par les Instituts de recherche en santédu Canada (IRSC).
文摘In pediatric advanced cancer,i.e.,when cancer-targeted treatments are not effective,care provided to patients is of palliative nature.It aims at limiting symptoms and optimizing quality of life(QoL).To orient care,it is necessary to know and measure what is really important for young people.Unfortunately,tools are still scarce in this context.The aim of this paper is to describe the development process of a new QoL assessment method,the Advance QoL program.This is specifically designed for the clinical context of pediatric advanced cancer.Three previous studies carried out by our team identified seven important QoL domains for this population.We developed a tool named Advance QoL—parent/caregiver version.A current study aims to develop self-reported versions of the Advance QoL for children(8-12 years)and adolescents(13-18 years)with advanced cancer.In the very near future,the Advance QoL tool will be available in three versions(parents/caregivers,children,and adolescents)ready to be tested in validation studies.Regular assessment of the QoL of young people with cancer is a central process in defining targets for care and should be carried out throughout the trajectory,including when cancer is at an advanced stage,i.e.,when no standard treatment options are available.
