Table 4.
Patient responses to survey questions regarding types and sources of information
| Survey question number | Number of Participant Responses | Percentage of Participant Responses |
|---|---|---|
| 7. What type of information have you tried to find online? | ||
| Help with day to day management such as fatigue, pain and symptoms | 246 | 46.2 % |
| To better understand the condition/diagnosis | 420 | 79.0 % |
| To find recommendations on medication/dialysis/surgery | 215 | 40.4 % |
| To find recommendations on hospitals/nephrologists | 144 | 27.1 % |
| To find information about the type of diet/nutrition guidelines for PKD | 431 | 81.0 % |
| Other comments | 63 | 11.8 % |
| No response | 4 | 0.7 % |
| 8. Have you used social media to find information on PKD? | ||
| 351 | 69.9 % | |
| YouTube | 129 | 25.7 % |
| 48 | 9.6 % | |
| 23 | 4.6 % | |
| 23 | 4.6 % | |
| Another social media platform | 61 | 12.2 % |
| I don’t use social media | 72 | 14.3 % |
| No response | 34 | 6.3 % |
| 9. Do you follow a special diet for your PKD ? | ||
| No | 97 | 19.6 % |
| Yes | 371 | 74.9 % |
| Did not answer | 27 | 5.5 % |
| 10. Have you seen a dietitian previously to get information about the diet for PKD? | ||
| Yes | 193 | 36.1 % |
| No | 327 | 61.1 % |
| Other comments | 45 | 8.4 % |
| No response | 1 | 0.2 % |