Table 4

Studies evaluating cancer patients who had received results of tumor next-generation sequencing

StudyCountrySample sizeStudy populationType of surveyDimensions and measuresMain findings
Halverson 2016U.S.39

Advanced-stage cancer and conditions that were presumed to be genetic but without diagnosis

 

Exhausted standard treatments

Semistructured interviewsSatisfaction with primary results and overall process

Found sequencing helpful because of the personal utility and ability to make more informed decisions about health care

 

Gave significant weight to their own interpretations that differed from health care providers

 

Found satisfaction in being able to contribute knowledge to a new field regardless of clinical utility of the results

Miller 2014Canada29

Advanced stage

 

Multiple tumor types

Semistructured interviewsSatisfaction with primary results and overall processThose who had hoped for novel and targeted treatment resulting from testing were challenged by nonfindings or limited access to relevant trials
Roberts 2018U.S.297

Advanced stage

 

Multiple tumor types

In-person or Web-based self-administered questionnaireSatisfaction with primary results and overall process

Low levels of regret

 

Mean satisfaction score 4.06 (1 = not at all satisfied; 5 = extremely satisfied), and most would make the same choice again if they had to do it over (mean score 4.37; 1 = strongly disagree; 5 = strongly agree)

Gornick 2018U.S.57

Advanced stage

 

Multiple tumor types

Mailed surveyRecollection of disclosure of results25% to whom there was documentation of results disclosure reported that disclosure had not taken place
StudyCountrySample sizeStudy populationType of surveyDimensions and measuresMain findings
Halverson 2016U.S.39

Advanced-stage cancer and conditions that were presumed to be genetic but without diagnosis

 

Exhausted standard treatments

Semistructured interviewsSatisfaction with primary results and overall process

Found sequencing helpful because of the personal utility and ability to make more informed decisions about health care

 

Gave significant weight to their own interpretations that differed from health care providers

 

Found satisfaction in being able to contribute knowledge to a new field regardless of clinical utility of the results

Miller 2014Canada29

Advanced stage

 

Multiple tumor types

Semistructured interviewsSatisfaction with primary results and overall processThose who had hoped for novel and targeted treatment resulting from testing were challenged by nonfindings or limited access to relevant trials
Roberts 2018U.S.297

Advanced stage

 

Multiple tumor types

In-person or Web-based self-administered questionnaireSatisfaction with primary results and overall process

Low levels of regret

 

Mean satisfaction score 4.06 (1 = not at all satisfied; 5 = extremely satisfied), and most would make the same choice again if they had to do it over (mean score 4.37; 1 = strongly disagree; 5 = strongly agree)

Gornick 2018U.S.57

Advanced stage

 

Multiple tumor types

Mailed surveyRecollection of disclosure of results25% to whom there was documentation of results disclosure reported that disclosure had not taken place
Table 4

Studies evaluating cancer patients who had received results of tumor next-generation sequencing

StudyCountrySample sizeStudy populationType of surveyDimensions and measuresMain findings
Halverson 2016U.S.39

Advanced-stage cancer and conditions that were presumed to be genetic but without diagnosis

 

Exhausted standard treatments

Semistructured interviewsSatisfaction with primary results and overall process

Found sequencing helpful because of the personal utility and ability to make more informed decisions about health care

 

Gave significant weight to their own interpretations that differed from health care providers

 

Found satisfaction in being able to contribute knowledge to a new field regardless of clinical utility of the results

Miller 2014Canada29

Advanced stage

 

Multiple tumor types

Semistructured interviewsSatisfaction with primary results and overall processThose who had hoped for novel and targeted treatment resulting from testing were challenged by nonfindings or limited access to relevant trials
Roberts 2018U.S.297

Advanced stage

 

Multiple tumor types

In-person or Web-based self-administered questionnaireSatisfaction with primary results and overall process

Low levels of regret

 

Mean satisfaction score 4.06 (1 = not at all satisfied; 5 = extremely satisfied), and most would make the same choice again if they had to do it over (mean score 4.37; 1 = strongly disagree; 5 = strongly agree)

Gornick 2018U.S.57

Advanced stage

 

Multiple tumor types

Mailed surveyRecollection of disclosure of results25% to whom there was documentation of results disclosure reported that disclosure had not taken place
StudyCountrySample sizeStudy populationType of surveyDimensions and measuresMain findings
Halverson 2016U.S.39

Advanced-stage cancer and conditions that were presumed to be genetic but without diagnosis

 

Exhausted standard treatments

Semistructured interviewsSatisfaction with primary results and overall process

Found sequencing helpful because of the personal utility and ability to make more informed decisions about health care

 

Gave significant weight to their own interpretations that differed from health care providers

 

Found satisfaction in being able to contribute knowledge to a new field regardless of clinical utility of the results

Miller 2014Canada29

Advanced stage

 

Multiple tumor types

Semistructured interviewsSatisfaction with primary results and overall processThose who had hoped for novel and targeted treatment resulting from testing were challenged by nonfindings or limited access to relevant trials
Roberts 2018U.S.297

Advanced stage

 

Multiple tumor types

In-person or Web-based self-administered questionnaireSatisfaction with primary results and overall process

Low levels of regret

 

Mean satisfaction score 4.06 (1 = not at all satisfied; 5 = extremely satisfied), and most would make the same choice again if they had to do it over (mean score 4.37; 1 = strongly disagree; 5 = strongly agree)

Gornick 2018U.S.57

Advanced stage

 

Multiple tumor types

Mailed surveyRecollection of disclosure of results25% to whom there was documentation of results disclosure reported that disclosure had not taken place
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