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Table 3 Patient- and physician-oriented outcomes by domain and data source in the MedSeq project

From: The MedSeq Project: a randomized trial of integrating whole genome sequencing into clinical medicine

  Data source
  Patient surveys Patient interviews Physician surveys Physician interviews Physician checklist Audio recordings EHR review GRC logbook
Attitudes and preferences         
Attitudes about project[48]       
Attitudes about sequencing[13]       
Perceived utility    
Preferences for information       
Understanding         
Understanding of consent[49, 50]     
Understanding of results       
Genetic self-efficacy[51]        
Genetic literacy[52]     
Health and risk perceptions[53]        
Psychological impact         
General anxiety and depression[30]        
Results-specific affect[54]        
Intolerance of uncertainty[55]        
Behavioral impact         
Health behaviors and intentions[56]       
Insurance coverage[57]       
Medication and supplement use       
Information seeking and sharing[58]     
Health-care utilization         
Willingness to pay        
Shared decision-making[59]       
Follow-up testing and screening[60]  
Decisional satisfaction         
Satisfaction[61]       
Decisional regret[62]       
Expectations       
  1. References indicate published scales used in the design of the data collection instruments for the MedSeq Project. EHR, electronic health record; GRC, Genome Resource Center.