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 |