Genetic Counselling
Conditions
Brief summary
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.
Detailed description
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.
Interventions
OTHERPatients referred to CGS at NCCS for HBOC or Lynch syndrome pre-test genetic counselling.
Patients are given a series of questions evaluating cognitive and psychosocial outcomes, either via hardcopy in-person or online internet-facing questionnaire.
Sponsors
National Cancer Centre, Singapore
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
21 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Age ≥ 21 years old. * Patients referred to CGS at NCCS for HBOC or Lynch syndrome pre-test genetic counselling. * Able to read and understand the English Language. * Able to consent and agree to be randomized to either telegenetics or in-person genetic counselling.
Exclusion criteria
* Under the age of 21 years old. * Patients who require genetic results urgently. * Cognitive difficulty/ impairment or current psychiatric or physical illness (visual/ hearing/ neurological) which impairs sound judgement and accurate reporting of medical history over video consultation.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Genomics Outcome Scale | Up to 2 weeks after consultation | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Adapted Multidimensional Measure of Informed Choice (MMIC) for Hereditary Breast and Ovarian Cancer (HBOC) and Lynch | Up to 2 weeks after consultation | 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. |
| Genetic Counselling Satisfaction Scale | Up to 2 weeks after consultation | 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. |
| Telehealth Patient Survey | Up to 2 weeks after consultation | 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. |
Countries
Singapore
Contacts
CONTACTRyan Tan
PRINCIPAL_INVESTIGATORRyan Tan
National Cancer Centre, Singapore
Outcome results
None listed