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Table 1 Determinants for cascade screening among individuals diagnosed with LS

From: Development and initial testing of a multi-stakeholder intervention for Lynch syndrome cascade screening: an intervention mapping approach

Level

Determinant

Identified in Qualitative Interviews

Identified in Systematic Review?

Changeability Score Average (Standard Deviation; Range)

Prioritized?

Patient

Beliefs about the relative priority of cascade screening among relatives

Y

Y

2.75

(0.5; 1)

Y

Fear of genetic discrimination

Y

Y

2.6

Y

Belief that cascade screening is of low relative priority

Y

Y

2.6

(0.55; 1)

Y

Low perceived susceptibility of relatives

Y

Y

2.6

(0.55; 1)

Y

Fear and avoidance of LS diagnosis

Y

Y

2.4

(0.55; 1)

Y

Low knowledge about LS required for sharing information

Y

*

2.4

(0.55; 1)

Y

Low outcomes expectancies for managing LS if tested positive

Y

N

2.2

(0.84; 2)

Y

Guilt or stigma around uncovering a positive result

Y

Y

2.2

(0.45; 1)

Y

Perceived costs as a barrier to testing

Y

Y

2

(0.71; 2)

Y

Provider

Low provider knowledge about LS and cascade testing

Y

Y

2.3

(0.97; 2)

Y

Limited provider knowledge about HIPAA-allowed processes for provider to directly contact relatives/assist in cascade screening

Y

N

2.1

(0.89; 2)

Y

Lack of provider skills to provide cascade screening

Y

Y

2

(1; 2)

Y

Family

Complex family dynamics

Y

Y

1.5

(0.5; 1)

Y

Organizational

Lack of non-English resources

Y

N

2.4

(0.89; 2)

Y

Lack of time for provider to follow up with patients about cascade screening

Y

N

2

(0.71; 2)

Y

Belief that it is of low relative priority in clinic

Y

N

2

(0.82; 2)

Y

Community

Limited access to genetic services (e.g., travel time, distance)

Y

Y

2.2

(0.84; 2)

Y

Policy

Lack of coverage for genetic testing and/or counseling

Y

Y

1.4

(0.89; 2)

N

Low access due to high test/follow-up costs

Y

N

1.3

(0.45; 1)

N