Table 1 Attributes and levels used in the discrete choice experiment to describe alternative diagnostic testing approaches
From: The value of diagnostic testing for parents of children with rare genetic diseases
Attribute | Levels |
|---|---|
Type of diagnostic test(s) your child would undergo | Exome sequencing Other genetic testing methods (one or small number of genes tested at a time) Operative procedures (biopsies, surgeries)a Series of other tests and procedures (any combination of laboratory tests and/or imaging procedures such as X-ray, MRI, or CT scan) |
Chance of a diagnosis from the test | 1 out of 10 4 out of 10 6 out of 10 9 out of 10 |
Negative impact of receiving a diagnosis from the test | Lifestyle restrictions Subject to discrimination and/or being labeled by others Receive a poor prognosis No negative impacta |
Positive impact of receiving a diagnosis from the test | Changes medical management of the disease Facilitates access to disease-specific services, programming, and support groups Provides knowledge about the cause of the disease, how it will progress, what the future might hold, and identifies other family that might be at risk for the disease No positive impacta |
Out of pocket cost of diagnostic testing (CAN$) | 0 1000 5000 10,000 20,000 |
Time to obtain an answer (diagnosis or not) | 6 months 3 years 5 years 10 years 20 years |
