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Article Dans Une Revue Journal of Psychosocial Oncology Année : 2018

Psychological impact of von Hippel-Lindau genetic screening in patients with a previous history of hemangioblastoma of the central nervous system

Claire Rochette
  • Fonction : Auteur
Karine Baumstarck
  • Fonction : Auteur
Helene Canoni-Zattara
  • Fonction : Auteur
Ahmad Esmaeel Abdullah
  • Fonction : Auteur
Dominique Figarella-Branger
Morgane Pertuit
  • Fonction : Auteur
Anne Barlier
  • Fonction : Auteur
Karel Pacak
Philippe Metellus

Résumé

Von Hippel-Lindau (VHL) syndrome is a hereditary cancer syndrome characterized by a high risk of developing benign and malignant tumors, including central nervous system hemangioblastomas (CNS HBs). For an early diagnosis of VHL, before the occurrence of cancers (especially renal cell carcinoma), it is of huge importance to initiate VHL genetic testing in at-risk patients. The aim of the study was to assess the psychological impact of VHL genetic testing in patients previously diagnosed with a CNS HB. From 1999 until 2015, 55 patients underwent surgery for CNS HBs. Eleven patients were already screened for VHL mutations and 3 patients deceased before the start of the study. From the remaining 42 patients, 24 were accepted to be enrolled in the study. Assessment of psychological impact of VHL genetic testing was performed by measuring anxiety levels, mood disorders, quality of life, and psychological consequences of genetic screening. Twenty-one of the enrolled 24 patients underwent VHL genetic testing and 12 patients came back for the communication of positive genetic results. The baseline psychological status did not differ between these 2 groups. Patients who attended the visit of communication of genetic results had similar anxiety levels compared to those who had not. Furthermore, they also experienced an improvement in the level of anxiety and two QoL dimension scores compared to their baseline status. In summary, there is no evidence of a negative psychosocial impact of VHL genetic testing in patients with a previous history of CNS HB. We, therefore, recommend the recall of patients who have not been previously screened.

Dates et versions

hal-02143686 , version 1 (29-05-2019)

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Citer

Claire Rochette, Karine Baumstarck, Helene Canoni-Zattara, Ahmad Esmaeel Abdullah, Dominique Figarella-Branger, et al.. Psychological impact of von Hippel-Lindau genetic screening in patients with a previous history of hemangioblastoma of the central nervous system. Journal of Psychosocial Oncology, 2018, 36 (5), pp.624-634. ⟨10.1080/07347332.2018.1450320⟩. ⟨hal-02143686⟩
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