Psychosocial impact of prognostic genetic testing in uveal melanoma patients: a controlled prospective clinical observational study

• Main Authors: Marietta Lieb, Sefik Tagay, Anja Breidenstein, Tobias Hepp, Claudia H. D. Le Guin, Jennifer Scheel, Dietmar R. Lohmann, Norbert Bornfeld, Martin Teufel, Yesim Erim
• Format: Article
• Language: English
• Published: BMC 2020-01-01
• Series: BMC Psychology
• Subjects: Prognostic genetic testing; Uveal melanoma; Psychosocial impact; Controlled prospective clinical observation trial; Psycho-oncological intervention
• Online Access: https://doi.org/10.1186/s40359-020-0371-3

Abstract Background The risk of metastases in uveal melanoma can accurately be estimated through genetic analysis of the tumor. A growing number of patients decide to receive information on their prognosis, although this can be extremely burdensome. Studies on the psychosocial impact of testing are sparse. The objective of this study was to examine traits of patients opting for prognostication, to investigate its psychosocial impact and the use of psycho-oncological services over time. We further examined characteristics of patients utilizing these services and risk factors of prolonged psychological distress. Design and methods This study is a non-randomized controlled prospective clinical observational trial. Patients availing for prognostication formed the test group, while those who opted out constituted the observational group. The psychosocial impact of genetic testing was assessed with the following variables: resilience, social support, fear of tumor progression, depression, general distress, health-related quality of life, estimation of the perceived risk, and the utilization of psycho-oncological interventions. Data were assessed at five different time points over a period of 12 months. We applied binary logistic regression analysis, multiple linear regressions and a mixed model. Results Of 175 patients, 63 decided to obtain prognostic information. Treatment method (enucleation > brachytherapy), lower social support and higher general distress could significantly predict patient’s choice for prognostic testing. After result announcement, perceived risk of metastases was significantly increased in patients with poor prognosis, while it decreased in those with good prognosis. Overall, a significant decrease over time appeared concerning fear of progression, general distress, depression and anxiety. Mental quality of life increased over time. The utilization of psycho-oncological interventions increased significantly after prognostication; however, this was equivalent in the test and observational groups. Female sex, higher general distress and higher anxiety predicted greater use of psycho-oncological interventions. Discussion Availing of prognostic testing is not associated with poorer subsequent psychological well-being. It rather may help to alleviate distress and promote a more realistic risk perception. However, psychological support should be available to all patients, independent of prognosis and treatment, especially considering that patients with low social support and high distress increasingly opt for prognostication.