Table 8 Wider impact of late onset GM2 gangliosidosis
Wider impact of late onset GM2 gangliosidosis | |||
|---|---|---|---|
Question | Possible Answer | Numerical value | Converted Numerical Value (For composite scale) |
Over the past month, did you miss any time from your job or school due to your illness? | No | 0 | 0 |
Yes, 1 day | 1 | 0.25 | |
Yes, 2 days | 2 | 0.5 | |
Yes, 3 or 4 days | 3 | 0.75 | |
I have been unable to work/study due to my illness or have changed my working pattern to be able to accommodate my illness | 4 | 1 | |
Over the past month, have other family members missed time from their job or school (i.e. college or university) due to your illness? | No | 0 | 0 |
Yes, 1 day | 1 | 0.25 | |
Yes, 2 days | 2 | 0.5 | |
Yes, 3 or 4 days | 3 | 0.75 | |
Another family member has changed his/her working pattern to be able to care for me | 4 | 1 | |
How many times, during the past month, did you visit the emergency room because of issues relating to your illness? | Never | 0 | 0 |
1 time | 1 | 0.33 | |
2–3 times | 2 | 0.66 | |
More than 4 times | 3 | 1 | |
During the past month, how many appointments have you had with a physician regarding your illness? | None | 0 | 0 |
1 appointment | 1 | 0.33 | |
2–3 appointments | 2 | 0.66 | |
More than 4 appointments | 3 | 1 | |
Total Score | 14 | Â | |