OnkoRiskNET: a multicenter, interdisciplinary, telemedicine-based model to improve care for patients with a genetic tumor risk syndrome
Abstract Background Genetic tumor risk syndromes are responsible for at least five to ten percent of the 4 million cases of cancer diagnosed in Europe every year. Currently, the care of oncological patients suffers from a lack of specialists in medical genetics and also a lack of access to genetic c...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2022-06-01
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| Series: | BMC Health Services Research |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12913-022-08172-2 |
| _version_ | 1828834307172466688 |
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| author | Johanna Tecklenburg Beate Vajen Susanne Morlot Petra Anders Paula Memenga Elena Link Eva Baumann Sarah Wölffling Evelin Schröck Anke Katharina Bergmann Brigitte Schlegelberger |
| author_facet | Johanna Tecklenburg Beate Vajen Susanne Morlot Petra Anders Paula Memenga Elena Link Eva Baumann Sarah Wölffling Evelin Schröck Anke Katharina Bergmann Brigitte Schlegelberger |
| author_sort | Johanna Tecklenburg |
| collection | DOAJ |
| description | Abstract Background Genetic tumor risk syndromes are responsible for at least five to ten percent of the 4 million cases of cancer diagnosed in Europe every year. Currently, the care of oncological patients suffers from a lack of specialists in medical genetics and also a lack of access to genetic care in rural areas and structured care pathways between oncologists and medical geneticists. As a result, genetic tumor risk syndromes are underdiagnosed with potentially fatal consequences for patients and their families. Methods The OnkoRiskNET study is supported by a grant from the Federal Joint Committee of the Federal Republic of Germany. The study will include 2,000 oncological index patients from oncology practices in Lower Saxony and Saxony after the start of the study in July 2021. Randomization is carried out by means of a stepped wedge design at the level of the practices. Patients either go through routine care or the new form of care with structured cooperation between medical geneticists and oncologists, case management and the use of telemedical genetic counseling. Using a mixed-methods approach, the following parameters will be evaluated in the control and intervention group: (1) Conducted genetic counseling sessions by patients with suspected tumor risk syndrome and their first degree relatives; (2) Patient satisfaction and psychological distress after genetic counseling and testing; (3) Factors influencing the acceptance and experience of telemedical genetic counseling; (4) Satisfaction of oncologists and medical genetics with the structured pathway; (5) Cost efficiency of the new form of care. Discussion OnkoRiskNET aims to close the gap in care through the formation of a cooperation network between practicing oncologists and specialists in medical genetics and the use of telemedical genetic counseling, thereby, increasing the diagnostic rate in genetic tumor risk syndromes and serving as a model for future genetic care in Germany. Trial registration Trial was registered on 01.12.2021 in the German Clinical Trial Register ( https://trialsearch.who.int/ ) with the DRKS-ID: DRKS00026679 . Title: Cooperation network for the provision of local care for patients and families with a genetic tumour risk syndrome. Trial acronym: OnkoRiskNET. Protocol version 1.1. |
| first_indexed | 2024-12-12T17:36:57Z |
| format | Article |
| id | doaj.art-09ce0dbbb3c9478788ed46ae354e2e20 |
| institution | Directory Open Access Journal |
| issn | 1472-6963 |
| language | English |
| last_indexed | 2024-12-12T17:36:57Z |
| publishDate | 2022-06-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Health Services Research |
| spelling | doaj.art-09ce0dbbb3c9478788ed46ae354e2e202022-12-22T00:17:11ZengBMCBMC Health Services Research1472-69632022-06-012211810.1186/s12913-022-08172-2OnkoRiskNET: a multicenter, interdisciplinary, telemedicine-based model to improve care for patients with a genetic tumor risk syndromeJohanna Tecklenburg0Beate Vajen1Susanne Morlot2Petra Anders3Paula Memenga4Elena Link5Eva Baumann6Sarah Wölffling7Evelin Schröck8Anke Katharina Bergmann9Brigitte Schlegelberger10Department of Human Genetics, Hannover Medical SchoolDepartment of Human Genetics, Hannover Medical SchoolDepartment of Human Genetics, Hannover Medical SchoolDepartment of Human Genetics, Hannover Medical SchoolDepartment of Journalism and Communication Research, Drama and Media, Hanover University of MusicDepartment of Journalism and Communication Research, Drama and Media, Hanover University of MusicDepartment of Journalism and Communication Research, Drama and Media, Hanover University of MusicDepartment of Human Genetics, University Hospital Carl Gustav Carus DresdenDepartment of Human Genetics, University Hospital Carl Gustav Carus DresdenDepartment of Human Genetics, Hannover Medical SchoolDepartment of Human Genetics, Hannover Medical SchoolAbstract Background Genetic tumor risk syndromes are responsible for at least five to ten percent of the 4 million cases of cancer diagnosed in Europe every year. Currently, the care of oncological patients suffers from a lack of specialists in medical genetics and also a lack of access to genetic care in rural areas and structured care pathways between oncologists and medical geneticists. As a result, genetic tumor risk syndromes are underdiagnosed with potentially fatal consequences for patients and their families. Methods The OnkoRiskNET study is supported by a grant from the Federal Joint Committee of the Federal Republic of Germany. The study will include 2,000 oncological index patients from oncology practices in Lower Saxony and Saxony after the start of the study in July 2021. Randomization is carried out by means of a stepped wedge design at the level of the practices. Patients either go through routine care or the new form of care with structured cooperation between medical geneticists and oncologists, case management and the use of telemedical genetic counseling. Using a mixed-methods approach, the following parameters will be evaluated in the control and intervention group: (1) Conducted genetic counseling sessions by patients with suspected tumor risk syndrome and their first degree relatives; (2) Patient satisfaction and psychological distress after genetic counseling and testing; (3) Factors influencing the acceptance and experience of telemedical genetic counseling; (4) Satisfaction of oncologists and medical genetics with the structured pathway; (5) Cost efficiency of the new form of care. Discussion OnkoRiskNET aims to close the gap in care through the formation of a cooperation network between practicing oncologists and specialists in medical genetics and the use of telemedical genetic counseling, thereby, increasing the diagnostic rate in genetic tumor risk syndromes and serving as a model for future genetic care in Germany. Trial registration Trial was registered on 01.12.2021 in the German Clinical Trial Register ( https://trialsearch.who.int/ ) with the DRKS-ID: DRKS00026679 . Title: Cooperation network for the provision of local care for patients and families with a genetic tumour risk syndrome. Trial acronym: OnkoRiskNET. Protocol version 1.1.https://doi.org/10.1186/s12913-022-08172-2Genetic tumor risk syndromeGenetic counselingTelemedicine |
| spellingShingle | Johanna Tecklenburg Beate Vajen Susanne Morlot Petra Anders Paula Memenga Elena Link Eva Baumann Sarah Wölffling Evelin Schröck Anke Katharina Bergmann Brigitte Schlegelberger OnkoRiskNET: a multicenter, interdisciplinary, telemedicine-based model to improve care for patients with a genetic tumor risk syndrome BMC Health Services Research Genetic tumor risk syndrome Genetic counseling Telemedicine |
| title | OnkoRiskNET: a multicenter, interdisciplinary, telemedicine-based model to improve care for patients with a genetic tumor risk syndrome |
| title_full | OnkoRiskNET: a multicenter, interdisciplinary, telemedicine-based model to improve care for patients with a genetic tumor risk syndrome |
| title_fullStr | OnkoRiskNET: a multicenter, interdisciplinary, telemedicine-based model to improve care for patients with a genetic tumor risk syndrome |
| title_full_unstemmed | OnkoRiskNET: a multicenter, interdisciplinary, telemedicine-based model to improve care for patients with a genetic tumor risk syndrome |
| title_short | OnkoRiskNET: a multicenter, interdisciplinary, telemedicine-based model to improve care for patients with a genetic tumor risk syndrome |
| title_sort | onkorisknet a multicenter interdisciplinary telemedicine based model to improve care for patients with a genetic tumor risk syndrome |
| topic | Genetic tumor risk syndrome Genetic counseling Telemedicine |
| url | https://doi.org/10.1186/s12913-022-08172-2 |
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