Here is my questionnaire for PALS who opted against LTMV. As you can see it's not as long as the prior two questionnaires. I welcome your input as these are in some sense works in progress.
For those patients who decided not to go on LTMV
1. What stage are you in the disease?
2. What was the primary factor in your decision against the use of LTMV?
1 Cost
2 Quality of life issues
3 Availability of qualified healthcare providers
4 Research data, case studies, or talking with other ALS patients
5 Physician advice
3. What other factors influenced your decision?
4. Does your spouse or caregiver agree with your decision?
5. Do you regret the decision you made?
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