Table 5.
“Tropho-netnography” evaluation of the women participating in the study.
| Variables | Treated at reference centers (n=176) | Not treated at reference centers (n=180) | P valuea | ||
| How did you find the Facebook group of the Brazilian Association of Gestational Trophoblastic Disease?, n (%) | |||||
|
|
|
Search sites and pages | 85 (48.3) | 139 (77.2) | <.001 |
|
|
|
Friend referral | 11 (6.3) | 9 (5.0) | .61 |
|
|
|
Patient referral | 19 (10.8) | 6 (3.3) | .006 |
|
|
|
Health assistant referral | 64 (36.4) | 32 (17.8) | <.001 |
| How often do you access this group on Facebook? (n=355), n (%) | .02 | ||||
|
|
|
Daily | 122 (69.7) | 103 (57.5) | —b |
|
|
|
Weekly | 36 (20.6) | 61 (34.1) | — |
|
|
|
Rarely | 17 (9.7) | 15 (8.4) | — |
| How long have you been in this group on Facebook?, n (%) | .03 | ||||
|
|
|
≤6 months | 81 (46) | 62 (34.4) | — |
|
|
|
> 6 months | 95 (54) | 118 (65.6) | — |
| What are the main reasons that lead to follow this group on Facebook?c, n (%) | |||||
|
|
|
I find emotional and psychological support in the group | 87 (49.4) | 90 (50.0) | .91 |
|
|
|
I get more information about the disease and treatment | 138 (78.4) | 148 (82.2) | .36 |
|
|
|
I receive directions for specialized professional and reference center for treatment and follow-up | 68 (38.6) | 78 (43.3) | .37 |
|
|
|
I enlarge my network of online friends | 4 (2.3) | 7 (3.9) | .38 |
|
|
|
I have the opportunity to interact with patients with gestational trophoblastic disease | 103 (58.5) | 102 (56.7) | .72 |
| Have you published or liked something in this group on Facebook?, n (%) | |||||
|
|
If NO, why not?c | 16 (9.1) | 18 (10.0) | .77 | |
|
|
|
I do not feel comfortable | 4 (25) | 3 (16.7) | .68 |
|
|
|
I would rather just watch | 10 (62.5) | 11 (61.1) | .93 |
|
|
|
I think it is a lot of exposure | 1 (6.3) | 3 (16.7) | .60 |
|
|
If YES, what were the post subjects?c | 160 (90.9) | 162 (90.0) |
|
|
|
|
|
Ask questions about my treatment | 84 (52.5) | 107 (66.0) | .01 |
|
|
|
Give support to someone who feels discouraged | 78 (48.8) | 75 (46.3) | .66 |
|
|
|
Share the success of my treatment | 73 (45.6) | 76 (46.9) | .82 |
|
|
|
Receive comfort and words of encouragement | 35 (21.9) | 41 (25.3) | .47 |
|
|
|
I liked a publication I found appropriate | 116 (72.5) | 103 (63.6) | .09 |
| How do you feel about the advice posted by doctors in this group on Facebook? (n=354), n (%) | .62d | ||||
|
|
|
Completely safe | 146 (83.9) | 156 (86.7) | — |
|
|
|
Partially safe | 26 (14.9) | 21 (11.7) | — |
|
|
|
I have no opinion | 2 (1.1) | 3 (1.7) | — |
|
|
|
Partly unsafee | 1 (0.0) | 0 (0.0) | — |
|
|
|
Totally unsafee | 1 (0.0) | 0 (0.0) | — |
| How do you feel about the advice posted by the patients in this group in Facebook?, n (%) | .81d | ||||
|
|
|
Completely safe | 57 (32.4) | 57 (31.7) | — |
|
|
|
Partially safe | 93 (52.8) | 99 (55) | — |
|
|
|
No opinion | 14 (8.0) | 16 (8.9) | — |
|
|
|
Partly unsafe | 9 (5.1) | 7 (3.9) | — |
|
|
|
Totally unsafe | 3 (1.7) | 1 (0.6) | — |
| In addition to specialized physicians, what other professional would you like to actively participate in this group on Facebook?, n (%) | |||||
|
|
|
Social worker (N=356) | 30 (17.0) | 39 (21.7) | .27 |
|
|
|
Lawyer (N=356) | 11 (6.3) | 10 (5.6) | .78 |
|
|
|
Nurse (N=356) | 31 (17.6) | 27 (15.0) | .50 |
|
|
|
Psychologist (N=355) | 126 (72.0) | 131 (72.8) | .87 |
|
|
|
I do not see the need for other professionals (N=356) | 37 (21.0) | 34 (18.9) | .61 |
aChi-square test.
bNot applicable.
cMore than one answer was possible.
dLikelihood ratio test.
eThese numbers were excluded for comparison because of the small frequency.