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This study aims to compare clinical outcomes (informed choice and genetic counselling outcomes) and cost (provider and patient time, travel, and telehealth platform) between telegenetics and in-person genetic counselling.
This study will compare the patient-reported outcomes of telegenetics with in-person consultations for participants considering germline testing for HBOC or Lynch syndrome. It will clarify if telegenetics is a feasible and non-inferior alternative to in-person cancer genetic counselling. Participant responses are important stakeholder views to guide the design of telegenetics to become a mainstream service delivery model welcomed by patients.
It aims to recruit 150 prospective consecutive patients attending genetic counselling for Hereditary Breast and Ovarian Cancer (HBOC) and Lynch Syndrome in Clinical Genetic Services (CGS) at National Cancer Centre Singapore (NCCS).
Upon completion of the genetic consultation appointments, patients will be completing a series of questions evaluating cognitive and psychosocial outcomes either via hardcopy in-person or online internet-facing questionnaire.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients referred to CGS at NCCS for HBOC or Lynch syndrome pre-test genetic counselling. | Patients attending genetic counselling for Hereditary Breast and Ovarian Cancer (HBOC) and Lynch Syndrome in Clinical Genetic Services (CGS) at National Cancer Centre Singapore (NCCS) |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Patients referred to CGS at NCCS for HBOC or Lynch syndrome pre-test genetic counselling. | Other | Patients are given a series of questions evaluating cognitive and psychosocial outcomes, either via hardcopy in-person or online internet-facing questionnaire. |
| Measure | Description | Time Frame |
|---|---|---|
| Genomics Outcome Scale | Patient reported outcomes will be compared with a 6 item Genomics Outcome Scale (GOS) across five domains (decisional control, cognitive control, behavioral control, emotional regulation and hope) which are rated on a 5-point Likert scale ranging from "strongly agree" to "strongly disagree". Scores are summed to provide an overall "empowerment" where higher scores equal higher levels of empowerment. | Up to 2 weeks after consultation |
| Measure | Description | Time Frame |
|---|---|---|
| Adapted Multidimensional Measure of Informed Choice (MMIC) for Hereditary Breast and Ovarian Cancer (HBOC) and Lynch | Participant's knowledge and attitude of HBOC and Lynch syndrome will be compared with a multi-dimensional measure of informed choice (MMIC) which composed of 11 items for knowledge of HBOC or 12 items for knowledge of Lynch syndrome and 4 items for attitudes. Items will be summed with a score or rated on a 7-pointed Likert scale. |
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Inclusion Criteria:
Exclusion Criteria:
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Patients referred to CGS at NCCS for HBOC or Lynch syndrome pre-test genetic counselling.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Ryan Tan | Contact | +65 6436 8000 | ryan.shea.tan.y.c@singhealth.com.sg |
| Name | Affiliation | Role |
|---|---|---|
| Ryan Tan | National Cancer Centre, Singapore | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| National Cancer Centre Singapore | Recruiting | Singapore | 169610 | Singapore |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 32357277 | Background | Lee AKF, Cho RHW, Lau EHL, Cheng HK, Wong EWY, Ku PKM, Chan JYK, Yeung ZWC. Mitigation of head and neck cancer service disruption during COVID-19 in Hong Kong through telehealth and multi-institutional collaboration. Head Neck. 2020 Jul;42(7):1454-1459. doi: 10.1002/hed.26226. Epub 2020 May 7. | |
| 32568721 | Background |
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| Up to 2 weeks after consultation |
| Genetic Counselling Satisfaction Scale | Genetic counselling satisfaction is measured with a 6 item Genetic Counselling Satisfaction Scale. Items will be rated on a 5-point Likert scale and summed. Higher scores indicating higher satisfaction. | Up to 2 weeks after consultation |
| Telehealth Patient Survey | Telehealth satisfaction is measured with a 7 item Telehealth Patient Survey. Items will be rated on a 5-point Likert scale and summed. Higher scores indicating higher satisfaction. | Up to 2 weeks after consultation |
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