학술논문
The ENGAGE study: a 3-arm randomized hybrid type 1 effectiveness and implementation study of an in-home, collaborative PCP model of remote telegenetic services to increase uptake of cancer genetic services in childhood cancer survivors
Document Type
Clinical report
Author
Henderson, Tara O.; Allen, Mary Ashley; Mim, Rajia; Egleston, Brian; Fleisher, Linda; Elkin, Elena; Oeffinger, Kevin; Krull, Kevin; Ofidis, Demetrios; Mcleod, Briana; Griffin, Hannah; Wood, Elizabeth; Cacioppo, Cara; Weinberg, Michelle; Brown, Sarah; Howe, Sarah; McDonald, Aaron; Vukadinovich, Chris; Alston, Shani; Rinehart, Dayton; Armstrong, Gregory T.; Bradbury, Angela R.
Source
BMC Health Services Research. February 28, 2024, Vol. 24 Issue 1
Subject
Language
English
ISSN
1472-6963
Abstract
Author(s): Tara O. Henderson[sup.1], Mary Ashley Allen[sup.1], Rajia Mim[sup.2], Brian Egleston[sup.3], Linda Fleisher[sup.3], Elena Elkin[sup.4], Kevin Oeffinger[sup.5], Kevin Krull[sup.6], Demetrios Ofidis[sup.2], Briana Mcleod[sup.2], Hannah Griffin[sup.2], Elizabeth Wood[sup.2], Cara Cacioppo[sup.2], Michelle [...]
Background Germline cancer genetic testing has become a standard evidence-based practice, with established risk reduction and screening guidelines for genetic carriers. Access to genetic services is limited in many places, which leaves many genetic carriers unidentified and at risk for late diagnosis of cancers and poor outcomes. This poses a problem for childhood cancer survivors, as this is a population with an increased risk for subsequent malignant neoplasms (SMN) due to cancer therapy or inherited cancer predisposition. The ENGaging and Activating cancer survivors in Genetic services (ENGAGE) study evaluates the effectiveness of an in-home, collaborative PCP model of remote telegenetic services to increase uptake of cancer genetic testing in childhood cancer survivors compared to usual care options for genetic testing. Methods The ENGAGE study is a 3-arm randomized hybrid type 1 effectiveness and implementation study within the Childhood Cancer Survivor Study population which tests a clinical intervention while gathering information on its delivery during the effectiveness trial and its potential for future implementation among 360 participants. Participants are randomized into three arms. Those randomized to Arm A receive genetic services via videoconferencing, those in Arm B receive these services by phone, and those randomized to Arm C will receive usual care services. Discussion With many barriers to accessing genetic services, innovative delivery models are needed to address this gap and increase uptake of genetic services. The ENGAGE study evaluates the effectiveness of an adapted model of remote delivery of genetic services to increase the uptake of recommended genetic testing in childhood cancer survivors. This study assesses the uptake in remote genetic services and identify barriers to uptake to inform future recommendations and a theoretically-informed process evaluation which can inform modifications to enhance dissemination beyond this study population and to realize the benefits of precision medicine. Trial registration This protocol was registered at clinicaltrials.gov (NCT04455698) on July 2, 2020. Keywords: Genetic services, Telegenetic services, Remote genetic services, Childhood cancer survivors, In-home, Collaborative PCP model
Background Germline cancer genetic testing has become a standard evidence-based practice, with established risk reduction and screening guidelines for genetic carriers. Access to genetic services is limited in many places, which leaves many genetic carriers unidentified and at risk for late diagnosis of cancers and poor outcomes. This poses a problem for childhood cancer survivors, as this is a population with an increased risk for subsequent malignant neoplasms (SMN) due to cancer therapy or inherited cancer predisposition. The ENGaging and Activating cancer survivors in Genetic services (ENGAGE) study evaluates the effectiveness of an in-home, collaborative PCP model of remote telegenetic services to increase uptake of cancer genetic testing in childhood cancer survivors compared to usual care options for genetic testing. Methods The ENGAGE study is a 3-arm randomized hybrid type 1 effectiveness and implementation study within the Childhood Cancer Survivor Study population which tests a clinical intervention while gathering information on its delivery during the effectiveness trial and its potential for future implementation among 360 participants. Participants are randomized into three arms. Those randomized to Arm A receive genetic services via videoconferencing, those in Arm B receive these services by phone, and those randomized to Arm C will receive usual care services. Discussion With many barriers to accessing genetic services, innovative delivery models are needed to address this gap and increase uptake of genetic services. The ENGAGE study evaluates the effectiveness of an adapted model of remote delivery of genetic services to increase the uptake of recommended genetic testing in childhood cancer survivors. This study assesses the uptake in remote genetic services and identify barriers to uptake to inform future recommendations and a theoretically-informed process evaluation which can inform modifications to enhance dissemination beyond this study population and to realize the benefits of precision medicine. Trial registration This protocol was registered at clinicaltrials.gov (NCT04455698) on July 2, 2020. Keywords: Genetic services, Telegenetic services, Remote genetic services, Childhood cancer survivors, In-home, Collaborative PCP model