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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.