Processus pour le développement d’une stratégie d’évaluation de la qualitéde vie en cancer avancépédiatrique Process for Developing a Quality of Life Assessment Strategy in Advanced Pediatric Cancer  

作　　者：Lye-Ann Robichaud Marianne Olivier-D’Avignon Julie Felipe Hermann Ferdinand Thomas Ehrenfeld Marc-Antoine Marquis Bruno Michon Émélie Rondeau Mathias Tyo-Gomez Michel Duval Serge Sultan 

机构地区：[1]Département de Psychologie,Universitéde Montréal,Montréal,H3C 3J7,Canada [2]Centre de Recherche,Centre Hospitalier Universitaire(CHU)Sainte-Justine,Montréal,H3T 1C5,Canada [3]Centre de Psycho-Oncologie(CPO),CHU Sainte-Justine,Montréal,H3T 1C5,Canada [4]École de Travail Social,UniversitéLaval,Québec,G1V 0A6,Canada [5]Département de Pédiatrie,Universitéde Montréal,Montréal,H3T 1C5,Canada [6]Département de Pédiatrie Générale,CHU Sainte-Justine,Montréal,H3T 1C5,Canada [7]Centre Mère-enfant Soleil,CHU de Québec-UniversitéLaval,Québec,G1V 4G2,Canada [8]CHU de Québec-UniversitéLaval,Québec,G1V 4G2,Canada [9]Patient Partenaire,CHU Sainte-Justine,Montréal,H3T 1C5,Canada [10]Département d’Hémato-OncologIe,CHU Sainte-Justine,Montréal,H3T 1C5,Canada

出　　处：《Psycho-Oncologie》2024年第2期127-135,共9页肿瘤心理学（英文）

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).

摘　　要：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.

关 键 词：Pediatric cancer advanced cancer palliative care quality of life measures 

分 类 号：R73[医药卫生—肿瘤]