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Table 4 Key recommended changes and workbook modifications

From: Evaluation of the Families SHARE workbook: an educational tool outlining disease risk and healthy guidelines to reduce risk of heart disease, diabetes, breast cancer and colorectal cancer

Phase 1 recommended changes N Workbook modifications
No changes 11  
General recommendations   
 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   
 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   
 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.
  1. Abbreviations: N Number participants recommending this change