Barriers and facilitators to recruitment of underrepresented research participants: Perspectives of clinical research coordinators.

Background: Insufficient recruitment of groups underrepresented in medical research threatens the generalizability of research findings and compounds inequity in research and medicine. In the present study, we examined barriers and facilitators to recruitment of underrepresented research participants from the perspective of clinical research coordinators (CRCs). Methods: CRCs from one adult and one pediatric academic medical centers completed an online survey in April-May 2022. Survey topics included: participant language and translations, cultural competency training, incentives for research participation, study location, and participant research literacy. CRCs also reported their success in recruiting individuals from various backgrounds and completed an implicit bias measure. Results: Surveys were completed by 220 CRCs. CRCs indicated that recruitment is improved by having translated study materials, providing incentives to compensate participants, and reducing the number of in-person study visits. Most CRCs had completed some form of cultural competency training, but most also felt that the training either had no effect or made them feel less confident in approaching prospective participants from backgrounds different than their own. In general, CRCs reported having greater success in recruiting prospective participants from groups that are not underrepresented in research. Results of the implicit bias measure did not indicate that bias was associated with intentions to approach a prospective participant. Conclusions: CRCs identified several strategies to improve recruitment of underrepresented research participants, and CRC insights aligned with insights from research participants in previous work. Further research is needed to understand the impact of cultural competency training on recruitment of underrepresented research participants.

At-home end-tidal carbon dioxide measurement in children with invasive home mechanical ventilation.

BACKGROUND: Carbon dioxide concentration trending is used in chronic management of children with invasive home mechanical ventilation (HMV) in clinical settings, but options for end-tidal carbon dioxide (EtCO2 ) monitoring at home are limited. We hypothesized that a palm-sized, portable endotracheal capnograph (PEC) that measures EtCO2 could be adapted for in-home use in children with HMV. METHODS: We evaluated the internal consistency of the PEC by calculating an intraclass correlation coefficient of three back-to-back breaths by children (0-17 years) at baseline health in the clinic. Pearson's correlation was calculated for PEC EtCO2 values with concurrent mean values of in-clinic EtCO2 and transcutaneous CO2 (TCM) capnometers. The Bland-Altman test determined their level of agreement. Qualitative interviews and surveys assessed usability and acceptability by family-caregivers at home. RESULTS: CO2 values were collected in awake children in varied activity levels and positions (N = 30). The intraclass correlation coefficient for the PEC was 0.95 (p < 0.05). The correlation between the PEC and in-clinic EtCO2 device was 0.85 with a mean difference of -3.8 mmHg and precision of ±1.1 mmHg. The correlation between the PEC and the clinic TCM device was 0.92 with a mean difference of 0.2 mmHg and precision of ±1.0. Family-caregivers (N = 10) trialed the PEC at home; all were able to obtain measurements at home while children were awake and sometimes asleep. CONCLUSIONS: A portable, noninvasive device for measuring EtCO2 was feasible and acceptable, with values that trend similarly to currently in-practice, outpatient models. These devices may facilitate monitoring of EtCO2 at home in children with invasive HMV.

Substituting imputation of HLA antigens for high-resolution HLA typing: Evaluation of a multiethnic population and implications for clinical decision making in transplantation.

Molecular mismatch analysis for assessment of histocompatibility in transplantation requires high-resolution HLA typing. Algorithms to "guesstimate" high-resolution from low-resolution typing exist, but their accuracy remains unknown. We converted high-resolution, sequence-based, HLA typing of 310 subjects from an ethnically heterogeneous population to low-resolution equivalents and tested the ability of the NMDP HaploStats and HLA Matchmaker programs to impute/reproduce the measured high-resolution HLA type, using the more common "winner-takes-all" approach. Only 35.6% of the HaploStats imputed HLA-A, -B, -C, -DRB1, and -DQB1 haplotypes had no mistakes, and the accuracy was significantly lower for non-Caucasians (29.1%) compared to Caucasians (45.2%) (odds ratio [OR], 0.5; 95% confidence interval [CI], 0.3-0.8; P = .004). HLA Matchmaker was not able to provide high-resolution haplotypes for 45.2% of Caucasian subjects and 63.5% of non-Caucasian subjects (P = .002). Of those with an imputed result, only 10.3% of Caucasians and 4.8% of non-Caucasians had accurate 10-allele high-resolution output. Eplet analysis revealed additional, inaccurate eplets in 37% of individuals, with 22.5% showing at least 2 additional, inaccurate eplets; incorrect eplets were more common among non-Caucasians (OR, 1.8; 95% CI, 1.1-2.9; P = .018). Given this high error rate, caution should be taken before using imputation tools for clinical or research purposes, especially for non-Caucasian individuals.

Continuous Glucose Monitoring Associated With Less Diabetes-Specific Emotional Distress and Lower A1c Among Adolescents With Type 1 Diabetes.

BACKGROUND: Psychosocial impact research of continuous glucose monitoring (CGM) and continuous subcutaneous insulin infusion (CSII) among adolescents with type 1 diabetes (T1D) is limited. The present study assesses associations between diabetes technology use on adolescent- and parent-perceived diabetes-specific distress and A1c. METHOD: Adolescents with T1D and parents (N = 1040; primarily mothers) completed measures of diabetes distress. Adolescents were categorized by technology use: CGM Alone, CSII Alone, CGM+CSII, or No Technology. ANOVA, regression, and Cohen's d were used for group comparisons on measures of diabetes distress and A1c. Analyses also compared groups on clinical elevations of distress. RESULTS: CGM use was associated with less adolescent distress compared to No Technology ( d = 0.59), CGM+CSII ( d = 0.26), and CSII Alone ( d = 0.29). Results were similar but with smaller effect size for parent-reported distress, although CGM+CSII showed equivocal association with parent distress compared to No Technology ( d = 0.18). CGM Alone was associated with lower A1c compared to No Technology ( d = 0.48), to CSII Alone ( d = 0.37), and was comparable to CGM+CSII ( d = 0.03). CGM+CSII conferred advantage over CSII Alone ( d = 0.34). Clinical elevation of distress was associated with not using any technology particularly for adolescents. CONCLUSIONS: Technology use is associated with lower adolescent distress than lower parent distress. CGM Alone is associated with lower adolescent and parent distress than CSII or CGM+CSII. This appears to be clinically meaningful based on cut scores for measures. CGM is associated with lower A1c independent of being used alone or with CSII.

Family-Based Interventions Targeting Improvements in Health and Family Outcomes of Children and Adolescents with Type 1 Diabetes: a Systematic Review.

PURPOSE OF REVIEW: A systematic review was conducted of family-based interventions to improve glycemic control, adherence, and psychosocial outcomes in children and adolescents with type 1 diabetes (T1D). Electronic databases were searched for randomized controlled trials (RCTs) published since the seminal Diabetes Control and Compliance Trial (DCCT). Interventions are summarized and findings reviewed to help guide clinical practice and future research. RECENT FINDINGS: Twenty-five RCTs are reviewed. The majority of studies (n = 15) focused on interventions targeting both children and adolescents and their caregivers and were delivered in diabetes clinics, outpatient settings, mental health clinics, or participants' homes. Family-based interventions for youth with T1D appear effective at improving diabetes and family-centered outcomes. Additional research is needed to examine the pathways to improvement in glycemic control, as outcomes were mixed. Future research should also involve measures beyond HbA1c given new markers for sustained health improvement and outcomes are being explored.