Construction and preliminary validation of a tool to measure the needs of adolescents and young adults (AYA) diagnosed with cancer: the QUestionnaire nEEd Cancer AYAs: QUEEC-AYAs.

CONTEXT: In France, 2300 adolescents and young adults (AYAs, 15-25 years old) are diagnosed with cancer each year. As soon as the disease is diagnosed, a number of physical, psychological and social needs may arise. The aim of this study is to develop a tool to measure unmet needs that will allow the specificities of AYAs to be understood while allowing health care staff to mobilise the necessary actors to resolve them. METHODS: We developed the Questionnaire nEEd Cancer AYAs (QUEEC-AYAs questionnaire), from two existing questionnaires: the Cancer Needs Questionnaire Young People and the Needs Assessment & Service Bridge. A main sample of 103 AYAs then received and completed the questionnaire in order to conduct an exploratory factor analysis. RESULTS: The final structure of the QUEEC-AYAs is composed of 7 dimensions and 48 items: information (8 items), cancer care team (6 items), Physical health (4 items), Emotional health (14 items), Sexual & reproductive health (6 items), Health behaviors & wellness (4 items), Daily life (6 items). The questionnaire has a good acceptability and all domains have a Cronbach's alphas value above 0.80. CONCLUSION: The QUEEC-AYAs is the first measure of the psychosocial needs of AYAs available in French. Its systematic use in health care services should improve the coordination of care required by AYAs during and after treatment. TRIAL REGISTRATION: This study was approved by the ethics committee of the Paoli-Calmettes Institute (IRB # IPC 2021-041, 2021 May 20).

[Does the announcement of cancer at the time of Non Muscle-Invasive Bladder Cancer diagnosis affect quality of life and adherence of patients? Data from the French prospective cohort VICAN]. / L'annonce du cancer au diagnostic de Tumeur de vessie non infiltrant le muscle modifie-t-elle la qualité de vie et l'observance des patients ? Données de la cohorte prospective française VICAN.

INTRODUCTION: The information provided at the time of diagnosis of Non Muscle-Invasive Bladder Cancer (NMIBC) is highly variable. Well-informed patient are more involved in shared decisions. The objective of our study was to assess the information perceived by the patient at the time of NMIBC diagnosis and its impact on quality of life. METHODS: The VICAN french cohort involved a representative sample of 4174 cancer patients and 5 years survivors. Patients reported outcomes (PROs) were collected by phone and self-questionnaire. Among the 118 NMIBC patients, the term used to define the pathology at diagnosis was prospectively evaluated. The impact on quality of life (using SF-12, EORTC-QLQ-C30 and HAD scale) and on adherence to the care protocol (endoscopic monitoring) has been assessed. RESULTS: Only 26.8% of patients reported hearing the word « Cancer ¼ at the time of NMIBC diagnosis. Conversely, 73.2% of them reported others terms, including « Tumor ¼ (22%), « Polyp ¼ (24%), and « Carcinoma ¼ (17.1%). There was no difference in terms of physical, mental quality of life and anxiety, regardless of the term used. Adherence to the follow-up endoscopic protocol was better in the group of patients hearing the word "Cancer". CONCLUSION: Three quarters of patients treated for NMIBC did not integrate the concept of « Cancer ¼ at the time of diagnosis. Quality of life and anxiety did not differ significantly depending on the term used at diagnosis. However, adherence to care protocol appears to be higher when using the word "Cancer". LEVEL OF EVIDENCE: 3.