From: Clinical trials from the patient perspective: survey in an online patient community
ALS (N=160) | Diabetes Type II (N=158) | Epilepsy (N=131) | Fibromyalgia (N=241) | MS (N=343) | MDD (N=91) | PD (N=319) | RA (N=125) | SLE (N=53) | All Completers (N=1,621) | |
---|---|---|---|---|---|---|---|---|---|---|
Opportunity to improve health of others | 156 (98%) | 156 (99%) | 126 (96%) | 237 (98%) | 340 (99%) | 90 (99%) | 315 (99%) | 123 (98%) | 50 (94%) | 1,593 (98%) |
Opportunity to improve own health | 151a (94%) | 158a (100%) | 125 (95%) | 239 (99%) | 339 (99%) | 90 (99%) | 309 (97%) | 122 (98%) | 53 (100%) | 1,586 (98%) |
Reputation of institution and staff | 154 (96%) | 154 (97%) | 124 (95%) | 238 (99%) | 336 (98%) | 86 (95%) | 311 (97%) | 123 (98%) | 52 (98%) | 1,578 (97%) |
Covering medical bills in case of study related injury | 144a (90%) | 152 (96%) | 127 (97%) | 237a (98%) | 328 (96%) | 86 (95%) | 303 (95%) | 122 (98%) | 52 (98%) | 1,551 (96%) |
Receiving results after trial | 143abc (89%) | 153 (97%) | 120d (92%) | 237a (98%) | 331b (97%) | 87 (96%) | 303 (95%) | 125cd (100%) | 52 (98%) | 1,551 (96%) |
Side effect of new treatment | 133abcde (83%) | 150a (95%) | 120 (92%) | 228b (95%) | 328c (96%) | 87 (96%) | 303d (95%) | 120e (96%) | 52 (98%) | 1,521 (94%) |
Open label extension | 150 (94%) | 151 (96%) | 115a (88%) | 233a (97%) | 319 (93%) | 85 (93%) | 302 (95%) | 114 (91%) | 49 (92%) | 1,518 (94%) |
Potential negative impact on health | 128abcdefg (80%) | 143 (91%) | 123a (94%) | 222b (92%) | 325c (95%) | 86d (95%) | 298e (93%) | 121f (97%) | 50g (94%) | 1,496 (92%) |
Distance to travel to trial sites | 134ab (84%) | 141 (89%) | 120 (92%) | 233ac (97%) | 311 (91%) | 90bd (99%) | 285cd (89%) | 113 (90%) | 48 (91%) | 1,475 (91%) |
Friendliness of staff | 128ab (80%) | 145a (92%) | 107c (82%) | 229bcd (95%) | 304 (89%) | 76d (84%) | 281 (88%) | 110 (88%) | 48 (91%) | 1,428 (88%) |
Frequency and time spent on clinical visits | 132 (83%) | 143 (91%) | 111 (85%) | 216 (90%) | 302 (88%) | 85 (93%) | 286 (90%) | 102 (82%) | 48 (91%) | 1,425 (88%) |
Physician's recommendations | 126 (79%) | 141 (89%) | 119 (91%) | 192 (80%) | 294 (86%) | 72 (79%) | 277 (87%) | 113 (90%) | 44 (83%) | 1,378 (85%) |
Privacy and confidentiality | 91abcdefgh (57%) | 137a (87%) | 114b (87%) | 215ci (89%) | 277d (81%) | 75e (82%) | 247fi (77%) | 104g (83%) | 49h (92%) | 1,309 (81%) |
Keeping current doctor during trial | 103abcde (64%) | 126 (80%) | 110a (84%) | 191b (79%) | 281c (82%) | 65 (71%) | 248d (78%) | 109e (87%) | 43 (81%) | 1,276 (79%) |
Possibility of getting placebo | 95 (59%) | 103 (65%) | 87 (66%) | 157 (65%) | 235 (69%) | 52 (57%) | 188 (59%) | 91 (73%) | 38 (72%) | 1,046 (64%) |
Payment to participate | 30abcdefg (19%) | 95a (60%) | 83bhi (63%) | 128c (53%) | 148dhj (43%) | 47ek (52%) | 100ijklm (32%) | 72fl (58%) | 31gm (58%) | 734 (45%) |