Table 3.

Patients’ Perspectives on Their Informed Consent Experience

	% (n = 234)
Explanation About the Test, Treatment, or Procedure	%
Yes, person explained what would likely happen	94.0
Explanation was “definitely” easy to understand	90.5
Yes, person asked patient to describe understanding of what would likely happen	58.4
Yes, person explained what might go wrong and how likely it was	73.0
Explanation was “definitely” easy to understand	85.5
Other Options
Yes, person described other options, including no test or treatment as an option	54.9
Explanation was “definitely” easy to understand	80.6
Yes, someone showed patient a decision aid	37.4
Yes, decision aid was helpful in decision	77.4
Yes, felt free to choose any option, including choosing no test or treatment	92.9
Informed Consent Discussion
Yes, person listened carefully	99.1
Yes, person spent enough time	96.9
Yes, person asked about what matters most	68.6
Yes, person encouraged patient to ask questions	96.0
Yes, I had unanswered questions	10.1
I asked, but I didn’t get an answer	1.2
I asked, but response didn’t answer my questions	3.7
I asked, but the response was hard to understand	2.4
There wasn’t enough time to ask questions	4.9
I didn’t feel that I could ask questions	1.2
Other	1.2
Had enough information	96.9
Satisfaction with the Discussion
Yes, overall very satisfied with the experience	61.8
Consent Form
Yes, form was in English and patient reads English very well, or it was in the patient’s language (non-English)	95.8
and they read their language very well
Form was “very easy” to understand	66.8

Note: 90% of patient surveys were completed by patients themselves, and 8.9% were completed by a parent, legal guardian, health care proxy, or family member or friend. Most respondents reported having the informed consent conversation with their personal doctor (52.4%) or a doctor from the hospital (28.1%). The vast majority did not use an interpreter for the discussion and indicated that they speak English very well (97.4%). Although a Spanish version of the survey was available, it was not used by the hospitals, which may have affected the representativeness of the results.