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Parental Factors Associated With the Decision to Participate in a Neonatal Clinical Trial.
Weiss EM, Olszewski AE, Guttmann KF, Magnus BE, Li S, Shah AR, Juul SE, Wu YW, Ahmad KA, Bendel-Stenzel E, Isaza NA, Lampland AL, Mathur AM, Rao R, Riley D, Russell DG, Salih ZNI, Torr CB, Weitkamp JH, Anani UE, Chang T, Dudley J, Flibotte J, Havrilla EM, Kathen CM, O'Kane AC, Perez K, Stanley BJ, Wilfond BS, Shah SK
(2021) JAMA Netw Open 4: e2032106
MeSH Terms: Biomedical Research, Clinical Trials as Topic, Female, Humans, Infant, Newborn, Male, Parental Consent, Parents, Refusal to Participate, Surveys and Questionnaires, Trust
Show Abstract · Added April 16, 2021
Importance - It remains poorly understood how parents decide whether to enroll a child in a neonatal clinical trial. This is particularly true for parents from racial or ethnic minority populations. Understanding factors associated with enrollment decisions may improve recruitment processes for families, increase enrollment rates, and decrease disparities in research participation.
Objective - To assess differences in parental factors between parents who enrolled their infant and those who declined enrollment for a neonatal randomized clinical trial.
Design, Setting, and Participants - This survey study conducted from July 2017 to October 2019 in 12 US level 3 and 4 neonatal intensive care units included parents of infants who enrolled in the High-dose Erythropoietin for Asphyxia and Encephalopathy (HEAL) trial or who were eligible but declined enrollment. Data were analyzed October 2019 through July 2020.
Exposure - Parental choice of enrollment in neonatal clinical trial.
Main Outcomes and Measures - Percentages and odds ratios (ORs) of parent participation as categorized by demographic characteristics, self-assessment of child's medical condition, study comprehension, and trust in medical researchers. Survey questions were based on the hypothesis that parents who enrolled their infant in HEAL differ from those who declined enrollment across 4 categories: (1) infant characteristics and parental demographic characteristics, (2) perception of infant's illness, (3) study comprehension, and (4) trust in clinicians and researchers.
Results - Of a total 387 eligible parents, 269 (69.5%) completed the survey and were included in analysis. This included 183 of 242 (75.6%) of HEAL-enrolled and 86 of 145 (59.3%) of HEAL-declined parents. Parents who enrolled their infant had lower rates of Medicaid participation (74 [41.1%] vs 47 [55.3%]; P = .04) and higher rates of annual income greater than $55 000 (94 [52.8%] vs 30 [37.5%]; P = .03) compared with those who declined. Black parents had lower enrollment rates compared with White parents (OR, 0.35; 95% CI, 0.17-0.73). Parents who reported their infant's medical condition as more serious had higher enrollment rates (OR, 5.7; 95% CI, 2.0-16.3). Parents who enrolled their infant reported higher trust in medical researchers compared with parents who declined (mean [SD] difference, 5.3 [0.3-10.3]). There was no association between study comprehension and enrollment.
Conclusions and Relevance - In this study, the following factors were associated with neonatal clinical trial enrollment: demographic characteristics (ie, race/ethnicity, Medicaid status, and reported income), perception of illness, and trust in medical researchers. Future work to confirm these findings and explore the reasons behind them may lead to strategies for better engaging underrepresented groups in neonatal clinical research to reduce enrollment disparities.
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Black Americans' Perspectives of Barriers and Facilitators of Community Screening for Kidney Disease.
Umeukeje EM, Wild MG, Maripuri S, Davidson T, Rutherford M, Abdel-Kader K, Lewis J, Wilkins CH, Cavanaugh K
(2018) Clin J Am Soc Nephrol 13: 551-559
MeSH Terms: Adult, Advertising, African Americans, Aged, Community Health Services, Cultural Competency, Emotions, Female, Focus Groups, Health Education, Health Knowledge, Attitudes, Practice, Health Services Accessibility, Humans, Kidney Diseases, Male, Middle Aged, Motivation, Religion, Trust, Young Adult
Show Abstract · Added November 29, 2018
BACKGROUND AND OBJECTIVES - Incidence of ESKD is three times higher in black Americans than in whites, and CKD prevalence continues to rise among black Americans. Community-based kidney disease screening may increase early identification and awareness of black Americans at risk, but it is challenging to implement. This study aimed to identify participants' perspectives of community kidney disease screening. The Health Belief Model provides a theoretic framework for conceptualization of these perspectives and optimization of community kidney disease screening activities.
DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS - Researchers in collaboration with the Tennessee Kidney Foundation conducted three focus groups of adults in black American churches in Nashville, Tennessee. Questions examined views on CKD information, access to care, and priorities of kidney disease health. Content analysis was used. Guided by the Health Belief Model, themes were generated, and additional themes were derived from the data using an inductive approach.
RESULTS - Thirty-two black Americans completed the study in 2014. Participants were mostly women (79%) with a mean age of 56 years old (range, 24-78). Two major categories of barriers to kidney disease screening were identified: () participant factors, including limited kidney disease knowledge, spiritual/religious beliefs, emotions, and culture of the individual; and () logistic factors, including lack of convenience and incentives and poor advertisement. Potential facilitators of CKD screening included provision of CKD education, convenience of screening activities, and use of culturally sensitive and enhanced communication strategies. Program recommendations included partnering with trusted community members, selecting convenient locations, tailored advertising, and provision of compensation.
CONCLUSIONS - Findings of this study suggest that provider-delivered culturally sensitive education and stakeholder engagement are critical to increase trust, decrease fear, and maximize participation and early identification of kidney disease among black Americans considering community screening.
Copyright © 2018 by the American Society of Nephrology.
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20 MeSH Terms
Examining rheumatoid arthritis patients' trust in their provider over time: the effects of demographic factors and accessing sources of information.
Salt E, Rayens MK, Kerr AM, Alikhan M, Crofford LJ
(2015) Orthop Nurs 34: 159-65
MeSH Terms: Arthritis, Rheumatoid, Demography, Female, Humans, Information Services, Male, Trust
Show Abstract · Added March 25, 2020
BACKGROUND - Patients who trust their providers have better health outcomes; a trusting patient-provider relationship is needed for optimal management of rheumatoid arthritis (RA), a chronic autoimmune disease.
PURPOSES/METHODS - An observational study design (N = 100 RA patients) was used to:
RESULTS - : Patients' trust in their providers decreased over time. Less-educated persons and those who accessed information from the Internet reported less trust in their providers. Patients who consulted a larger number of information sources rated trust in their provider more positively.
CONCLUSION - RA patients' trust in providers is a dynamic construct influenced by education and health information.
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Predictors of health care system and physician distrust in hospitalized cardiac patients.
Gupta C, Bell SP, Schildcrout JS, Fletcher S, Goggins KM, Kripalani S, Vanderbilt Inpatient Cohort Study (VICS)
(2014) J Health Commun 19 Suppl 2: 44-60
MeSH Terms: Acute Coronary Syndrome, Adaptation, Psychological, Adult, Aged, Attitude to Health, Female, Health Literacy, Heart Failure, Humans, Inpatients, Male, Middle Aged, Multivariate Analysis, Physician-Patient Relations, Prospective Studies, Social Support, Trust
Show Abstract · Added January 20, 2015
Trusting relationships among patients, physicians, and the health care system is important in encouraging self-care behaviors in cardiovascular patients. This study aimed to assess the prevalence of health care system and physician distrust in this population, compare the 2 forms of distrust, and describe the demographic, socioeconomic, and psychosocial predictors of high distrust. A total of 1,232 hospitalized adults with acute coronary syndrome or heart failure were enrolled in a prospective, observational study assessing health care system distrust and physician distrust. High health care system distrust (35%) was observed across the population, with lower levels of interpersonal physician distrust (16%). In a multivariate analysis, poor social support and coping skills were strong predictors of both health care system (p=.026, p=.003) and physician distrust (p<.001, p=.006). Individuals with low or marginal health literacy had a higher likelihood of physician distrust (p<.001), but no relation was found between health literacy and health care system distrust. In conclusion, distrust is common among acutely ill cardiac patients. Those with low social support and low coping skills are more distrusting of physicians and the health care system.
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17 MeSH Terms
Health literacy, numeracy, and other characteristics associated with hospitalized patients' preferences for involvement in decision making.
Goggins KM, Wallston KA, Nwosu S, Schildcrout JS, Castel L, Kripalani S, Vanderbilt Inpatient Cohort Study (VICS)
(2014) J Health Commun 19 Suppl 2: 29-43
MeSH Terms: Adult, Aged, Attitude to Health, Cardiovascular Diseases, Educational Status, Female, Health Literacy, Humans, Inpatients, Male, Mathematical Concepts, Middle Aged, Multivariate Analysis, Patient Participation, Patient Preference, Prospective Studies, Sex Factors, Social Support, Trust
Show Abstract · Added January 20, 2015
Little research has examined the association of health literacy and numeracy with patients' preferred involvement in the problem-solving and decision-making process in the hospital. Using a sample of 1,249 patients hospitalized with cardiovascular disease from the Vanderbilt Inpatient Cohort Study (VICS), we assessed patients' preferred level of involvement using responses to two scenarios of differing symptom severity from the Problem-Solving Decision-Making Scale. Using multivariable modeling, we determined the relationship of health literacy, subjective numeracy, and other patient characteristics with preferences for involvement in decisions, and how this differed by scenario. The authors found that patients with higher levels of health literacy desired more participation in the problem-solving and decision-making process, as did patients with higher subjective numeracy skills, greater educational attainment, female gender, less perceived social support, or greater health care system distrust (p<.05 for each predictor in multivariable models). Patients also preferred to participate more in the decision-making process when the hypothetical symptom they were experiencing was less severe (i.e., they deferred more to their physician when the hypothetical symptom was more severe). These findings underscore the role that patient characteristics, especially health literacy and numeracy, play in decisional preferences among hospitalized patients.
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19 MeSH Terms
Factors that influence parental attitudes toward enrollment in type 1 diabetes trials.
Buscariollo DL, Davidson MA, Black M, Russell WE, Rothman RL, Moore DJ
(2012) PLoS One 7: e44341
MeSH Terms: Attitude, Child, Clinical Trials as Topic, Cross-Sectional Studies, Diabetes Mellitus, Type 1, Fear, Humans, Informed Consent, Motivation, Parents, Surveys and Questionnaires, Trust
Show Abstract · Added December 10, 2013
AIMS - To assess parental attitudes towards type 1 diabetes clinical trials (T1DCTs) and factors that impact willingness to enroll their children with and without diabetes.
METHODS - A cross-sectional survey of parents of children with type 1 diabetes was administered at an academic clinic and a diabetes educational event.
RESULTS - Survey response rate was 36%. Of 166 participating parents, 76% were aware of T1DCTs. More parents reported willingness to enroll children with diabetes (47%) than unaffected children (36%). Only 18% recalled being asked to enroll their children, and of these, 60% agreed to enroll at least some of those times. Less than 30% were comfortable with placebos. Factors predicting willingness to enroll children with diabetes included healthcare provider trust, comfort with consent by proxy, low fear of child being a "guinea pig," and comfort with placebo. Factors predicting willingness to enroll unaffected children were provider trust, comfort with consent by proxy, comfort with placebo, and perceived ease of understanding T1DCT information.
CONCLUSIONS - Parents report moderate willingness to enroll children in T1DCTs. Willingness is diminished by common trial methodologies. Although most parents recalled receiving trial-related information, significantly fewer recalled being asked to participate. Efforts to optimize effective communication around identified areas of parental concern may increase T1DCT participation.
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12 MeSH Terms
Systemic therapy and the urologic oncologist: a unique opportunity for the specialty to provide comprehensive care that ultimately benefits the patient.
Penson DF, Lange PH
(2012) Urol Oncol 30: S2-4
MeSH Terms: Communication, Delivery of Health Care, Humans, Medical Oncology, Physician-Patient Relations, Trust, Urologic Neoplasms, Urology
Show Abstract · Added March 5, 2014
The changing healthcare environment will demand greater integration and coordination of care for patients. By incorporating systemic therapies into the practice of urologic oncology, our specialty has the opportunity to take the lead in this initiative. By learning how to deliver these therapies to patients in need, urologic oncologists likely will improve communication and trust, as patients often will already have a long and positive relationship with their urologist. In turn, this will likely lead to increased satisfaction with care and possibly improved outcomes. The development of comprehensive urologic oncology practices that include the administration of systemic therapy will maintain the relevance of the specialty and ultimately benefit our patients.
Copyright © 2012 Elsevier Inc. All rights reserved.
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8 MeSH Terms
Two large-scale surveys on community attitudes toward an opt-out biobank.
Brothers KB, Morrison DR, Clayton EW
(2011) Am J Med Genet A 155A: 2982-90
MeSH Terms: Academies and Institutes, Adolescent, Adult, Aged, Aged, 80 and over, Biological Specimen Banks, Female, Genetic Research, Genetic Testing, Humans, Interviews as Topic, Male, Middle Aged, Public Opinion, Trust, Young Adult
Show Abstract · Added February 12, 2015
Although US research regulations allow for de-identified biorepositories to be developed without formal informed consent from the patients whose samples are included, it is unknown whether this model will be well-received by community members. Based on early evidence that such a biobank could be successful if patients who object have the opportunity to opt-out, Vanderbilt University developed a biorepository named BioVU that follows this model. This study reports the findings from two large-scale surveys among communities important to this biorepository. In the first, a population-based phone survey of Nashville residents, we found that approval for BioVU is high (93.9%) and that this approval is similar among all population groups. A hypothetical biobank that does not obtain some form of written permission is much less well received. In the second, an online survey of Vanderbilt University faculty and staff, we found a higher level of support for BioVU (94.5%) among faculty and staff working throughout the university. In this survey, employees least likely to approve of BioVU are those employees who prefer not to receive medical care at Vanderbilt University. These surveys demonstrate the highest level of approval for a genomic biobank ever reported in the literature, even among groups traditionally cautious about such research. This high level of approval may reflect increasing comfort with genomic research over time combined with the effect that trust in a specific institution can have on approval for an operating biobank compared with approval of a hypothetical biobank.
Copyright © 2011 Wiley Periodicals, Inc.
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User perspectives on the usability of a regional health information exchange.
Gadd CS, Ho YX, Cala CM, Blakemore D, Chen Q, Frisse ME, Johnson KB
(2011) J Am Med Inform Assoc 18: 711-6
MeSH Terms: Adult, Aged, Attitude of Health Personnel, Consumer Behavior, Cross-Sectional Studies, Electronic Health Records, Female, Humans, Information Dissemination, Logistic Models, Male, Medical Record Linkage, Middle Aged, Tennessee, Trust, User-Computer Interface
Show Abstract · Added January 20, 2015
OBJECTIVE - We assessed the usability of a health information exchange (HIE) in a densely populated metropolitan region. This grant-funded HIE had been deployed rapidly to address the imminent needs of the patient population and the need to draw wider participation from regional entities.
DESIGN - We conducted a cross-sectional survey of individuals given access to the HIE at participating organizations and examined some of the usability and usage factors related to the technology acceptance model.
MEASUREMENTS - We probed user perceptions using the Questionnaire for User Interaction Satisfaction, an author-generated Trust scale, and user characteristic questions (eg, age, weekly system usage time).
RESULTS - Overall, users viewed the system favorably (ratings for all usability items were greater than neutral (one-sample Wilcoxon test, p<0.0014, Bonferroni-corrected for 35 tests). System usage was regressed on usability, trust, and demographic and user characteristic factors. Three usability factors were positively predictive of system usage: overall reactions (p<0 0.01), learning (p<0.05), and system functionality (p<0.01). Although trust is an important component in collaborative relationships, we did not find that user trust of other participating healthcare entities was significantly predictive of usage. An analysis of respondents' comments revealed ways to improve the HIE.
CONCLUSION - We used a rapid deployment model to develop an HIE and found that perceptions of system usability were positive. We also found that system usage was predicted well by some aspects of usability. Results from this study suggest that a rapid development approach may serve as a viable model for developing usable HIEs serving communities with limited resources.
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16 MeSH Terms
Validation of an organizational communication climate assessment toolkit.
Wynia MK, Johnson M, McCoy TP, Griffin LP, Osborn CY
(2010) Am J Med Qual 25: 436-43
MeSH Terms: Communication, Cultural Competency, Female, Health Literacy, Humans, Inservice Training, Male, Organizational Culture, Process Assessment, Health Care, Prospective Studies, Quality of Health Care, Sex Factors, Socioeconomic Factors, Surveys and Questionnaires, Trust
Show Abstract · Added December 10, 2013
Effective communication is critical to providing quality health care and can be affected by a number of modifiable organizational factors. The authors performed a prospective multisite validation study of an organizational communication climate assessment tool in 13 geographically and ethnically diverse health care organizations. Communication climate was measured across 9 discrete domains. Patient and staff surveys with matched items in each domain were developed using a national consensus process, which then underwent psychometric field testing and assessment of domain coherence. The authors found meaningful within-site and between-site performance score variability in all domains. In multivariable models, most communication domains were significant predictors of patient-reported quality of care and trust. The authors conclude that these assessment tools provide a valid empirical assessment of organizational communication climate in 9 domains. Assessment results may be useful to track organizational performance, to benchmark, and to inform tailored quality improvement interventions.
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15 MeSH Terms