Defining the role of a genetic counselor within comprehensive care teams: perspectives of the provider team and patients

Autor: Hudson, Paul E.
Jazyk: angličtina
Rok vydání: 2018
Předmět:
Druh dokumentu: Text
Popis: Background: Multidisciplinary clinics have become the standard of care for several chronic diseases. Due to the increased uptake of clinical genetic testing for these disorders, the genetic counselor (GC) has emerged as a new key member of multidisciplinary teams. Prior research has demonstrated the importance of role clarification when new subspecialties are introduced to multidisciplinary teams given that differences in team member expectations may hinder the development of newly introduced professions. This study aims to provide insight into the duties of a GC in a multidisciplinary clinic by highlighting the services that a specific patient population value and the roles that the comprehensive care team members expect of a GC. Methods: Multidisciplinary team members working in four pediatric hematology/oncology clinics were recruited to complete a 48-question survey assessing their perception of a GC’s role in clinic. Patients over age 18 or their guardians seen in the same clinics were recruited to complete a similar 49-question survey. Demographic, clinical experience and perception data were analyzed using descriptive statistics, Kruskal-Wallis tests and chi-squared tests. Results: Providers perceived most GC roles as shared between GCs and other team members (54.0%) and fewer roles as primarily a GC’s responsibility (37.2%). Providers perceived roles related to genetic expertise and coordination of care to be primarily the role of a GC significantly more often than roles related to psychosocial skills (p < 0.0001). Conversely, roles related to psychosocial skills were significantly more likely to be perceived as another provider’s role than roles related to genetics and coordination of care (p = 0.0002, p < 0.0001). Traditionally psychosocial providers were more likely to perceive psychosocial roles as the role of another provider and more likely to perceive genetic roles as the role of a GC than traditionally medical providers (p > 0.05). Although most providers indicated they were very confident in their understanding of a GC’s training (68.0%), there was discordance between provider perceptions of certain roles and the division of responsibilities reported by GCs in clinic. For example, no providers indicated that collecting pregnancy, developmental, medical, social or psychosocial histories are primarily roles of a GC (n = 0, 0.0%). Patients or their caregivers found genetic counseling roles to be overall very important (84.2% of responses) – however, they perceived genetic-centric roles as significantly more important than roles related to coordination of care (p = 0.0326) and psychosocial skills (p < 0.0001).Conclusions: These results indicate that GCs in a multidisciplinary setting may maximize their potential in clinic by functioning as a genetic expert that assumes critical care coordination responsibilities related to genetic testing while allowing other team members to undertake psychosocial responsibilities. However, further communication between providers and GCs may be required to clarify expectations and amend differences in provider perceptions and the current GC-reported division of responsibilities in clinic. This study can serve as a basis for future research to further optimize a GC’s role in this setting.
Databáze: Networked Digital Library of Theses & Dissertations