Uveal melanoma (UM) is a rare eye tumor with dismal prognosis, for which Institut Curie is the French reference center. Primary UM requires localized treatment that often present short- and long-term effects on patients’ quality of life (QoL). In UM, genomic testing, together with traditional clinical information, is used to stratify patients by risk of recurrence, orienting towards more or less intense surveillance modalities. Little is known about how oncologists and patients communicate about cancer recurrence risk in non-Anglo-Saxon cultures. We hypothesize that the information needs and preferences of patients are different in the French culture compared to Anglo-Saxon countries, and that unmet information needs impacts on patients’ QoL and fear of cancer recurrence.
A specific patient-reported outcome (PRO) questionnaire has been developed within the EORTC Quality of Life Group for patients affected with UM; however, the international validation of this questionnaire, the EORTC QLQ-OPT30, has yet to be performed. A common cross-culturally validated instrument would allow for comparing and synthetizing results from studies performed in different cultures and healthcare practices. Evaluations of PROs are increasingly performed using electronic versions completed on a website or health application. Such digital assessment facilitates patients’ monitoring and clinical management, and has been demonstrated to minimize patients’ unmet care needs.
In this PhD project in the field of Human and Social Sciences, we propose to:
Objective 1: cross-culturally validate the EORTC QLQ-OPT30 module.
Objective 2: develop an electronic version of the EORTC QLQ-OPT30 adapted to the mobile application offered to patients at Institut Curie (MyCurie2).
Objective 3: perform a prospective observational study of oncologist-patient communication about genomic testing for determining cancer surveillance modalities, and assess satisfaction with clinician-patient communication.