Table 4 Key recommended changes and workbook modifications
Phase 1 recommended changes | N | Workbook modifications |
|---|---|---|
No changes | 11 | Â |
General recommendations | Â | Â |
 Add more information about the motivation for the workbook | 4 | The introduction page was revised to provide context about the research study and the value of the workbook. |
 Include disease information fact sheets | 3 | Disease information fact sheets were added including definitions of each disease and other pertinent information, such as risk factors and health screenings. |
 Add ideas on how to share risk information with relatives | 4 | Text was added encouraging use of the workbook to share this information with family members and health care providers, as well as the addition of a study website to access risk evaluation worksheets for other family members, such as children. |
 Visual improvements (less text, larger print, more graphics) | 9 | Text size was increased, text amount was decreased, and more graphics were added. |
 Reorder pages and add space to take notes | 7 | Two full pages are dedicated to each disease and demarcated with labeled tabs, allowing participants to go directly to the disease most salient to them. |
Sample and personal family health history trees | ||
 Remove, shorten, or clarify sample pedigree and sample assessment | 14 | The revised sample pedigree section was shortened and clarified for use as a reference instead of an exercise. Participant action is now focused on their personal risk assessment worksheets for each disease. |
 Add color and symbols to represent different diseases | 4 | No change. |
 Clarify first and second degree relatives visually | 7 | First- and second-degree relatives are now defined with text, plus color is used for clarification and better understanding. |
Risk assessment | Â | Â |
 Use a numerical risk assessment | 4 | No change. |
 Make the risk assessment interactive | 3 | Risk assessment was simplified and made more interactive through the use of worksheets that refer to their personal pedigree. |
Behavioral recommendations | Â | Â |
 Include concrete recommendations and links to resources | 8 | Generic information was replaced with more concrete, creative information to make health recommendations more actionable. |
 Clarify screening recommendations based on risk assessment | 3 | To connect the family history risk assessment worksheets with health behaviors, relevant behavior and screening messages were added below each risk evaluation. |
 Add a screening behavior timeline | 2 | No change. |