Skip to main content

Advertisement

Table 3 Perceived importance of factors for trial participation by condition

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%)
  1. Note: % endorsing “Somewhat” and “Very important”. Significant pairwise difference between classes were tested by the Fisher’s test with bootstrap adjusted p-values for pairwise comparisons (p < .05), denoted by the same alphabetic superscript in each row