| Literature DB >> 30474075 |
Azza Shoaibi1, Jihad S Obeid1, Jim C Oates2, Melissa L Habrat1, Leslie A Lenert1.
Abstract
OBJECTIVE: Obtaining patient permissions for research contact and for surplus tissue use as part of routine clinical practice can improve research participation. This study aims to investigate the difference in patient permissions for use of surplus tissues, and for direct contact for research, using 2 different methods of solicitation.Entities:
Keywords: biobank studies; patients portals; permission to contact; permission to contact platform; permission to surplus tissue use; research voluntarism
Year: 2018 PMID: 30474075 PMCID: PMC6241503 DOI: 10.1093/jamiaopen/ooy038
Source DB: PubMed Journal: JAMIA Open ISSN: 2574-2531
Figure 1.Research permission 2-item questionnaire.
Demographic and baseline measures by solicitation method before (n = 15 809) and after (n = 8228) propensity score matching
| Before matching (original data set) | After matching | |||
|---|---|---|---|---|
| Characteristics | Patient portal submission, % ( | In-clinic submission, % ( | Patient portal submission, % ( | In-clinic submission, % ( |
| Total | 73.9 (11 555) | 26.91 (4254) | 50 (4114) | 50 (4114) |
| Age (y) | ||||
| 18–35 | 19.48 (2240) | 30.31 (1266) | 27.88 (1147) | 29.97 (1233) |
| 36–50 | 20.29 (2333) | 22.91(957) | 24.84 (1022) | 22.53 (927) |
| 51–56 | 31.68 (3642) | 26.26 (1097) | 27.22 (1120) | 26.67 (1097) |
| >65 | 28.55 (3283) | 20.52 (857) | 20.05 (825) | 20.83 (857) |
| Sex | ||||
| Male | 36.96 (4271) | 21.39 (910) | 78.73 (3239) | 78.73 (3239) |
| Female | 63.04 (7284) | 78.61 (3344) | 21.27 (875) | 21.27 (875) |
| Race | ||||
| European Americans | 84.79 (9797) | 69.37 (2951) | 71.46 (2940) | 70.39 (2896) |
| African American | 11.85 (1369) | 27.90 (1190) | 26.01 (1070) | 26.79 (1102) |
| Others | 3.37 (389) | 2.73 (116) | 2.53 (104) | 2.82 (116) |
| Ethnicity | ||||
| Hispanic | 1.19 (138) | 1.36 (58) | 1.05 (43) | 1.34 (55) |
| Non-hispanic | 98.81 (11 417) | 98.64 (4196) | 98.95 (4071) | 98.66 (4059) |
| Charlson comorbidity index | ||||
| Scale 0 (CCI = 0) | 85.82 (9916) | 75.81 (3225) | 79.19 (3258) | 77.03 (3169) |
| Scale 1 (CCI = 1–2) | 11.63 (1344) | 20.92 (890) | 17.70 (728) | 19.71 (811) |
| Scale 2 (CCI = 3–4) | 1.05 (121) | 2.12 (90) | 1.90 (78) | 2.07 (85) |
| Scale 3 (CCI ≥5) | 1.51 (174) | 1.15 (49) | 1.22 (50) | 1.19 (49) |
| Permission for surplus tissue use | ||||
| Provided permission | 70.55 (8152) | 70.03 (2979) | 66.65 (2742) | 70.13 (2885) |
| Did not provide permission | 29.45 (3403) | 29.97 (1275) | 33.35 (1372) | 29.87 (1229) |
| Permission for future research contact | ||||
| Provided permission | 67.56 (7807) | 65.23 (2775) | 66.65 (2745) | 65.07 (2677) |
| Did not provide permission | 32.44 (3748) | 34.77 (1479) | 33.35 (1372) | 34.93 (1437) |
Note: Include “Opt-out” and “not ready to make a decision.”
Abbreviation: CCI: Charlson commodity index.
Figure 2.Cumulative distribution of the propensity score for observations in the clinic submission and the patient portal submission, based on all observations and matched observations. LPS: logit of the propensity score.
Permission rate, logistical regression estimates, and 95% CIs in analyses examining solicitation method and patient permissions for future research contact and surplus tissue use using the entire study population (before matching, n = 15 809)
| Permission for future research contact | Permission for surplus tissue use | |||||
|---|---|---|---|---|---|---|
| Factors | Provided permission, % ( | OR (95% CI) | Provided permission, % ( | OR (95% CI) | ||
| Age (y) | ||||||
| 18–35 | 59.38 (2082) | 0.76 (0.68–0.83) | <0.001 | 63.72 (2234) | 0.74 (0.67–0.82) | <0.001 |
| 35–50 | 66.87 (2200) | 1.00 (0.91–1.10) | 0.97 | 67.69 (2227) | 0.84 (0.76–0.93) | 0.00 |
| 50–65 | 69.99 (3317) | 1.07 (0.97–1.17) | 0.162 | 72.72 (3446) | 0.95 (0.86–1.04) | 0.273 |
| >65 | 70.05 (2900) | Reference | 75.85 (3140) | Reference | ||
| Gender | ||||||
| Female | 65.48 (6959) | 0.93 (0.87–1.00) | 0.062 | 68.22 (7250) | 0.85 (0.79–0.92) | <0.001 |
| Male | 69.93 (3623) | Reference | 74.91 (3881) | Reference | ||
| Race | ||||||
| African American | 55.79 (1426) | 0.57 (0.52–0.63) | <0.001 | 50.12 (1281) | 0.35 (0.32–0.38) | <0.001 |
| Others | 55.84 (282) | 0.70 (0.60–0.83) | <0.001 | 63.96 (323) | 0.68 (0.58–0.81) | <0.001 |
| European Americans | 69.61 (8874) | Reference | 74.73 (9527) | Reference | ||
| Chronic illness | ||||||
| Charlson scale 0 | 65.82 (8649) | 0.70 (0.51–0.95) | 0.02 | 69.10 (9081) | 0.50 (0.35–0.71) | 0.001 |
| Charlson scale 1 | 72.52 (1620) | 0.95 (0.69–1.31) | 0.73 | 76.72 (1714) | 0.73 (0.50–1.05) | 0.085 |
| Charlson scale 2 | 69.67 (147) | 0.82 (0.54–1.26) | 0.36 | 72.04 (152) | 0.58 (0.36–0.92) | 0.021 |
| Charlson scale 3 | 74.44 (166) | Reference | 82.51 (184) | Reference | ||
| Ethnicity | ||||||
| Non-hispanic | 66.98 (10 458) | 1.01 (0.74–1.38) | 0.947 | 70.42 (10 994) | 0.91 (0.65–1.26) | 0.55 |
| Hispanic | 63.27 (124) | Reference | 69.90 (137) | Reference | ||
| Solicitation method | ||||||
| In-clinic | 65.23 (2775) | 1.00 (0.92–1.08) | 0.966 | 70.03 (2979) | 1.21 (1.11–1.31) | <0.001 |
| Patient portal | 67.56 (7807) | Reference | 70.55 (8152) | Reference | ||
Abbreviations: CI: confidence intervals; OR: odds ratio.
Permission rates, adjusted logistical regression estimates and 95% CIs in analyses examining solicitation method and patient permissions for future research contact and surplus tissue use in different study population
| Permission for future research contact | Permission for surplus tissue use | ||||||
|---|---|---|---|---|---|---|---|
| Population | Solicitation method | Provided permission, % ( | OR (95% CI) | Provided permission, % ( | OR (95% CI) | ||
| Propensity score-matched population | In-clinic | 65.12 (2678) | 0.94 (0.85–1.03) | 0.175 | 70.27 (2891) | 1.20 (1.09–1.32) | <0.001 |
| Patient portal | 66.65 (2742) | Reference | 66.65 (2742) | Reference | |||
| European Americans | In-clinic | 69.81 (2060) | 1.02 (0.93–1.12) | 0.617 | 77.50 (2287) | 1.24 (1.12–1.37) | <0.001 |
| Patient portal | 69.5 (6814) | Reference | 73.90 (7240) | Reference | |||
| African American | In-clinic | 55.69 (661) | 1.011 (0.86–1.19) | 0.893 | 52.91 (628) | 1.26 (1.07–1.49) | 0.006 |
| Patient portal | 55.88 (765) | Reference | 47.70 (653) | Reference | |||
| Others | In-clinic | 46.55 (54) | 0.577 (0.39–0.86) | 0.007 | 55.17 (64) | 0.65 (0.43–0.97) | 0.036 |
| Patient portal | 58.61 (228) | Reference | 66.58 (259) | Reference | |||
Abbreviations: CI: confidence intervals; OR: odds ratio.
Adjusted for age, gender, ethnicity, and Charslon comorbidity index.