Table 2.

Respondent experience with ALS genetic testing

Question	Agree	Neutral	Disagree	Does not apply
The genetics of ALS was explained in a way that I could understand	88.5%	7.3%	4.2%	0.0%
I received the information I needed to make an informed decision about genetic testing	89.6%	6.2%	4.2%	0.0%
It was my decision to have genetic testing	90.7%	5.2%	3.1%	1.0%
I was satisfied with the way my test result was told/disclosed to me	75.0%	5.2%	8.3%	11.5%
My test result was explained to me in a way that I could understand	77.1%	7.3%	4.2%	11.5%
My questions about my test result were answered	71.9%	8.3%	5.2%	14.6%
My doctor/care team was emotionally supportive during the testing process	70.8%	17.7%	4.2%	7.3%
My doctor/care team explained what my result means for my children/family members	59.0%	15.8%	8.4%	16.8%
The results of my genetic testing were useful to me	70.8%	10.4%	7.3%	11.5%
The results of my genetic testing were useful to my family members	62.5%	18.8%	5.2%	13.5%
If I could “do it all over again,” I would choose to have genetic testing	80.1%	5.3%	4.2%	10.5%
I would recommend that other persons with ALS consider genetic testing	83.3%	12.5%	1.1%	3.1%

For analysis, responses were collapsed into three categories: “agree,” “neutral,” or “disagree”.