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Table 8 Wider impact of late onset GM2 gangliosidosis

From: A feasibility study of mHealth and wearable technology in late onset GM2 gangliosidosis (Tay-Sachs and Sandhoff Disease)

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