Article Figures & Data
Figures
Tables
Total, n (%) Urban, n (%) Suburban 1, n (%) Suburban 2, n (%) Rural, % P-Value* N 627 106 221 200 100 Parent Gender: female 516 (82.3) 83 (78.3) 186 (84.2) 167 (83.5) 80 .322 Age, years <.001 18 to 29 152 (24.2) 53 (50.0) 22 (10.0) 35 (17.5) 42 30 to 39 295 (47.0) 35 (33.0) 114 (51.6) 103 (51.5) 43 40 to 49+ 164 (26.2) 17 (16.0) 82 (37.1) 55 (27.5) 10 Race (n = 601) <.001 White 478 (79.5) 7 (6.6) 210 (95.0) 175 (87.5) 86 Black 87 (14.5) 83 (78.3) 0 0 4 Other 23 (3.7) 6 (5.7) 6 (2.7) 10 (5.0) 1 >1 race 13 (2.2) 4 (3.8) 1 (0.5) 4 (2.0) 4 Hispanic/Latino 8 (1.3) 0 3 (1.4) 3 (1.5) 2 <.001 Prior participation in research 135 (21.5) 32 (30.2) 50 (22.6) 45 (22.5) 8 .001 Child Age, years .011 <1 125 (19.9) 29 (27.4) 28 (12.7) 37 (18.5) 31 1 to 4 221 (35.2) 32 (30.2) 78 (35.3) 77 (38.5) 34 5 to 9 142 (22.6) 23 (21.7) 58 (26.2) 41 (20.5) 20 10+ 121 (19.3) 21 (19.8) 53 (24.0) 37 (18.5) 10 Gender: male 333 (53.1) 64 (60.4) 114 (51.6) 105 (52.5) 50 .558 Insurance (n = 600) <.001 Private 416 (69.3) 23 (21.7) 201 (91) 149 (74.5) 43 CHIP 23 (3.8) 5 (4.7) 3 (1.4) 7 (3.5) 8 Medical assistance 142 (23.7) 69 (65.1) 9 (4.1) 28 (14) 36 >1 19 (3.2) 4 (3.8) 2 (0.9) 9 (4.5) 4 Prior participation in research 82 (13.1) 14 (13.2) 37 (16.7) 22 (11.0) 9 .077 ↵* P-value derived from χ2 analysis with varying degrees of freedom. CHIP, children's health insurance program.
- Table 2.
Parents' Perceptions of Benefits of Child Health Research or Reasons to Participate*
Total, n (%) Urban, n (%) Suburban 1, n (%) Suburban 2, n (%) Rural, % P-Value† N 627 106 221 200 100 We could improve care of children (earlier diagnoses, treatment) 465 (74.2) 75 (70.8) 183 (82.8) 136 (68.0) 71 .003 We could find answers that may help other children and families 422 (67.3) 68 (64.2) 170 (76.9) 124 (62.0) 60 .002 My child may get better care (tests/treatment) 347 (55.3) 74 (69.8) 123 (55.7) 103 (51.5) 47 .005 We could learn more about my child's health condition 346 (55.2) 70 (66.0) 134 (60.6) 101 (50.5) 40 .001 Convenient (not much time, travel) 169 (26.9) 29 (27.4) 74 (33.5) 54 (27.0) 12 .001 My child's doctor recommends that we participate 128 (20.4) 24 (22.6) 47 (21.3) 39 (19.5) 18 .829 Compensation 109 (17.3) 27 (25.5) 34 (15.4) 42 (21.0) 6 .001 My child may want to participate 106 (16.9) 33 (31.3) 36 (16.3) 26 (13.0) 11 <.001 ↵* Survey question: “What do you feel are the benefits of participation, or reasons to participate, in child health research? (Choose ALL of the following that are true for you.)”
↵† P-value derived from χ2 analysis with varying degrees of freedom. Parent perceptions are bolded to indicate statistical significance.
- Table 3.
Parents' Perceptions of Risks of Child Health Research or Reasons Not to Participate*
Total, n (%) Urban, n (%) Suburban 1, n (%) Suburban 2, n (%) Rural, % P-Value† N 627 106 221 200 100 Side effect concerns from treatments 377 (60.1) 54 (50.9) 126 (57.0) 129 (64.5) 68 .032 Concerns about discomfort from tests/treatments 326 (52.0) 41 (38.7) 119 (53.8) 111 (55.5) 55 .027 My family is too busy 282 (45.0) 33 (31.3) 124 (56.1) 96 (48.0) 29 <.001 Would take too much time 244 (38.9) 27 (25.5) 114 (51.6) 82 (41.0) 21 <.001 Research is too risky/not safe 231 (36.8) 32 (30.2) 66 (29.9) 90 (45.0) 43 .003 My child wouldn't want to participate 178 (28.4) 19 (17.9) 73 (33.0) 61 (30.5) 25 .029 My child is too young 131 (20.9) 24 (22.6) 32 (14.5) 46 (23.0) 29 .017 Privacy/confidentiality concerns 61 (9.7) 15 (14.1) 21 (9.5) 18 (9.0) 7 .342 ↵* Survey question: “What do you feel are the risks of participation, or reasons not to participate, in child health research? (Choose ALL of the following that are true for you.)”
↵† P-value derived from χ2 analysis with varying degrees of freedom. Parent perceptions are bolded to indicate statistical significance.
Total, n (%) Urban, n (%) Suburban 1, n (%) Suburban 2, n (%) Rural, n (%) P-Value* N 627 106 221 200 100 Would you like to learn about child health research opportunities in the future? 400 (63.8) 79 (74.5) 139 (62.9) 125 (62.5) 57 (57) .235 How would you like to learn about potential research opportunities?† Asked in person in this office 280 (70.0) 58 (73.4) 103 (74.1) 81 (64.8) 38 (66.7) .049 Email or texts 223 (55.8) 37 (46.8) 80 (57.6) 75 (60.0) 31 (54.4) .730 Brochure 99 (24.8) 28 (35.4) 28 (20.1) 30 (24.0) 13 (22.8) .010 Message in waiting room 91 (22.8) 15 (19.0) 32 (23.0) 31 (24.8) 13 (22.8) .95 Practice or research website 90 (22.5) 9 (8.5) 25 (18.0) 40 (32.0) 16 (28.1) .018 CTSI research registry 87 (21.8) 18 (22.8) 46 (33.1) 16 (12.8) 7 (12.3) <.001 Computer screen savers in exam rooms 85 (21.3) 20 (25.3) 27 (19.4) 26 (20.8) 12 (21.1) .369 US mail 79 (19.8) 0 (0) 21 (15.1) 35 (28.0) 23 (40.4) <.001 Social media 46 (11.5) 10 (12.6) 12 (8.6) 18 (14.4) 6 (10.5) .400 If you were interested in a research study, how likely would you be to enroll your child if the study took place in… This office 357 (56.9) 65 (61.3) 136 (61.5) 113 (56.5) 43 (43) <.001 Your home 324 (51.7) 52 (49.1) 124 (56.1) 101 (50.5) 47 (47) <.001 Pediatric practice nearby 179 (28.5) 33 (31.1) 66 (29.8) 61 (30.5) 19 (19) <.001 Children's Hospital 147 (23.4) 30 (28.3) 39 (17.6) 56 (28.0) 22 (22) <.001 Children's Hospital Satellite 146 (23.2) 26 (24.5) 64 (28.9) 37 (18.5) 19 (19) <.001 University of Pittsburgh 91 (14.5) 40 (37.7) 15 (6.8) 20 (10.0) 16 (16) <.001 ↵* P-value derived from χ2 analysis with varying degrees of freedom. Parent preferences are bolded to indicate statistical significance.
↵† N = 400 for the total, rather than 627, as this question was only presented to those who answered yes to the previous question (“Would you like to learn more about child health research opportunities in the future?”). N = 79 parents in the Urban practice, N = 139 parents in Suburban 1, N = 125 parents in Suburban 2, and N = 57 parents in the Rural practice. CTSI, Clinical and Translational Science Institute.
- Table 5.
Associations of Parent Perceptions of and Preferences for Child Health Research Participation*
On-site PBRN Research Staff, OR (95% CI)† <15 Miles Away from University, OR (95% CI)‡ Child Age ≥5 Years, OR (95% CI)§ Parent perceptions of benefits We could improve care of children (earlier diagnoses, treatment) 1.10 (0.72, 1.67) 0.58 (0.38, 0.89) 0.92 (0.58, 1.46) We could find answers that may help other children and families 1.32 (0.89, 1.95) 0.70 (0.75, 1.32) 1.17 (0.75, 1.30) My child may get better care (tests/treatment) 1.80 (1.24, 2.63) 1.62 (1.11, 2.38) 1.00 (0.67, 1.49) We could learn more about my child's health condition 1.91 (1.32, 2.77) 1.37 (0.94, 1.99) 1.24 (0.83, 1.85) Parent perceptions of risks Side effect concerns from treatments 0.52 (0.36, 0.76) 0.74 (0.51, 1.09) 0.78 (0.52, 1.16) Concerns about discomfort from tests/treatments 0.59 (0.41, 0.85) 0.69 (0.48, 1.01) 0.62 (0.42, 0.92) My family is too busy 1.29 (0.89, 1.87) 1.20 (0.82, 1.76) 1.09 (0.74, 1.62) Would take too much time 1.38 (0.93, 2.05) 1.11 (0.74, 1.66) 0.99 (0.66, 1.50) Parent preferences for enrollment Asked in this office 1.30 (0.89, 1.89) 0.99 (0.67, 1.44) 0.74 (0.49, 1.11) Asked via email/text 0.93 (0.64, 1.37) 1.03 (0.69, 1.53) 1.50 (1.00, 2.25) Parent preferences for participation In this office 2.14 (1.40, 3.27) 1.45 (0.95, 2.20) 0.89 (0.57, 1.39) Your Home 1.81 (1.19, 2.74) 1.15 (0.76, 1.74) 0.83 (0.53, 1.28) Pediatric Practice nearby 1.56 (1.02, 2.39) 1.48 (0.96, 2.28) 1.13 (0.72, 1.78) OR, odds ratio; PBRN, practice-based research network; CI, confidence interval.
↵* Bolded OR's are statistically significant with P < .05.
↵† Logistic regression models are controlled for parent age, gender, race, and previous participation in research; child age, gender, health insurance, and previous participation in research; and office <15 miles from the University.
↵‡ Logistic regression models are controlled for parent age, gender, race, and previous participation in research; child age, gender, health insurance, and previous participation in research; and on-site PBRN research staff.
↵§ Logistic regression models are controlled for parent age, gender, race, and previous participation in research; child gender, health insurance, and previous participation in research; presence of on-site PBRN research staff; and office <15 miles from the University.
