<p>In the context of limited resources and growing demand, patients access genetic testing for hereditary breast and ovarian cancer (HBOC) through various service models, some of which include genetic counseling sessions. This study assessed the impact of these service models and participation in genetic counseling on patients’ experiences and satisfaction with the genetic testing process. A total of 501 patients undergoing genetic testing for HBOC completed a 35-item survey, which included the Genetic Counseling Satisfaction Scale, the Decision Regret Scale, and a modified Royal Marsden Satisfaction Questionnaire. Additional information was gathered from the medical records. Descriptive statistics and Fisher’s exact tests were employed for the analysis. Four aspects of the genetic testing experience differed between service models and attendance to genetic counseling: i) receipt of informational materials prior to testing, ii) information that additional discussions with the genetic team were possible, iii) clarity regarding the timeline for receiving results, and iv) explanation of how the results would be delivered. The service model and participation in genetic counseling seem to influence patients’ experiences with genetic testing for HBOC. However, satisfaction was generally high and decision regret was low across all service models, highlighting the promise of care models designed to enhance accessibility.</p>

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Genetic counseling services for hereditary breast and ovarian cancer: patients’ experience and satisfaction with different service models

  • Ouerdia Haroun,
  • Julie Lapointe,
  • Rachel Guérard,
  • Anne-Sophie Bergeron,
  • Camille Raîche,
  • Jocelyne Chiquette,
  • Karine Bouchard,
  • Marie-Pascale Pomey,
  • Johanne Hébert,
  • Gabrielle Olivier Chevrier,
  • Philippe Lachapelle,
  • Arian Omeranovic,
  • Madeleine Côté,
  • Lily Boily,
  • Carmen Brisson,
  • Jean Gekas,
  • Tania Cruz-Marino,
  • Omar Touhami,
  • Arnaud Blanchet Saint-Pierre,
  • Sylvain Gagnon,
  • Karine Boisvert,
  • Claire Brousseau,
  • Lysanne Castonguay,
  • Isabelle Gosselin,
  • Marie-Claude Renaud,
  • Maria-Gabriela Ruiz Mangas,
  • Audrey Paquet-Beaupré,
  • Marie-Eve Bélanger,
  • Marie-Michelle Racine,
  • Marie-Claude Roy,
  • Sandra Blanchette,
  • Valérie Faucher,
  • Josianne Leblanc,
  • Marie-Eve Dubeau,
  • Mathias Cavaillé,
  • Marie Plante,
  • Christine Desbiens,
  • Martin Beaumont,
  • Jacques Simard,
  • Michel Dorval,
  • Hermann Nabi

摘要

In the context of limited resources and growing demand, patients access genetic testing for hereditary breast and ovarian cancer (HBOC) through various service models, some of which include genetic counseling sessions. This study assessed the impact of these service models and participation in genetic counseling on patients’ experiences and satisfaction with the genetic testing process. A total of 501 patients undergoing genetic testing for HBOC completed a 35-item survey, which included the Genetic Counseling Satisfaction Scale, the Decision Regret Scale, and a modified Royal Marsden Satisfaction Questionnaire. Additional information was gathered from the medical records. Descriptive statistics and Fisher’s exact tests were employed for the analysis. Four aspects of the genetic testing experience differed between service models and attendance to genetic counseling: i) receipt of informational materials prior to testing, ii) information that additional discussions with the genetic team were possible, iii) clarity regarding the timeline for receiving results, and iv) explanation of how the results would be delivered. The service model and participation in genetic counseling seem to influence patients’ experiences with genetic testing for HBOC. However, satisfaction was generally high and decision regret was low across all service models, highlighting the promise of care models designed to enhance accessibility.