Undermining the Translational Potential of Clinical Research With Adolescents and Young Adults: Differential Enrollment in Randomized Clinical Trials During COVID-19.

BACKGROUND: COVID-19 stay-at-home orders and research restrictions halted recruitment and follow-up of clinical research patients. Although clinical research has resumed, it is an open question whether research participation has returned to levels similar to those before COVID-19. METHODS: We used data from the TECH-PN (NCT No. NCT03828994) study, a single-center randomized controlled trial enrolling 13- to 25-year-olds with mild-moderate pelvic inflammatory disease (PID) receiving ambulatory care. We examined enrollment patterns before COVID-19 and during/after COVID-19 among those assessed for eligibility by estimating the average rate of recruitment visits for each period. We focused on this monthly rate by pandemic status, the length of stay (LOS) by pandemic status, as well as the relationship between the LOS and patient demographics. Descriptive analyses were conducted, including Student t test to compare rates between time periods and a χ2 test to compare the proportion refusing enrollment. RESULTS: The monthly enrollment rate during/after the pandemic was significantly lower than before COVID-19 (4.8 per month compared with 7.4 per month, P < 0.001). However, eligible participants' age, race, and insurance type were similar before and during/after the pandemic. Among eligible patients, LOS for receiving PID care was slightly increased, from a median of 5.4 to 6.4 hours ( P = 0.650), and the rate of refusal to participate among those eligible was similar (23% vs. 27%, P = 0.362). There were a similar number of ineligible patients because of inpatient admissions during both periods. CONCLUSION: COVID-19 pandemic restrictions negatively impacted recruitment into this randomized controlled trial. Enrollment differences may reflect ongoing perceptions of restrictions in care access or a hesitancy to use health services. More research is needed to stabilize access to ambulatory sexually transmitted infection/PID care and access to clinical trials.

Patient Portal Privacy: Perspectives of Adolescents and Emerging Adults Living with HIV and the Parental/Guardian Role in Supporting Their Care.

BACKGROUND: Increasing the percentage of people living with human immunodeficiency virus (HIV), including youth, who are virally suppressed to 95% is an overall goal of the ending the HIV epidemic initiative. While patient portals have become ubiquitous, questions remain about how best to operationalize parental/guardian access to youth's patient portals in alignment with optimizing HIV care outcomes and patient preferences. This qualitative study focuses on understanding perspectives among youth with HIV (YHIV) about parental access to patient portals. METHODS: Eligible participants were YHIV aged 13 to 25 years receiving care at an urban academic hospital. Semistructured individual/paired interviews were conducted between May 2022 and March 2023. Participants were asked to discuss thoughts on parental access to patient portals, and roles parents/guardians have in supporting their HIV care. Semistructured interviews were conducted with adolescent and emerging adult health care workers (HCWs) to gain perspectives on YHIV emergent themes. Audio-recorded interviews were transcribed verbatim, and we conducted thematic analysis using an inductive approach to identify codes and themes. RESULTS: Sixteen YHIV and four HCWs participated in interviews. Parental roles in coordinating HIV care ranged from supporting YHIV needs for transportation, acquiring, and taking medications, to not having any role at all. Participants shared heterogeneous perspectives about their openness to share patient portal access with their parents/guardians. Perspectives were not strictly congruent along lines of participant age or parental roles in helping youth to manage HIV care. Sharing passwords emerged both as a pathway that YHIV grant access to their accounts and a source of confusion for clinicians when parents/guardians send messages using their child's account. CONCLUSION: Findings suggest HCWs should initiate conversations with YHIV patients to determine preferences for parental/guardian access to their patient portal, educate on proxy access, and explain the extent of medical information that is shared with proxy accounts, regardless of age and perceived parental involvement in HIV care.

Understanding Perceived Risks and Sexual Behavior Among Adolescents and Young Adults During the COVID-19 Pandemic.

PURPOSE: We sought to describe the relationship between COVID-19 risk perception and sexual behaviors among urban adolescents and young adults (AYA). METHODS: Data were collected from 159 urban AYAs on COVID-19 risk perception, COVID-19 infections and deaths, romantic relationships, and sexual behavior during the stay-at-home order using a telephone survey. RESULTS: Seventy-nine percent of the study participants engaged in sexual intercourse during the stay-at-home order. Only 38% of these used condoms during their last sexual encounter. Experiencing COVID-19 positivity within their social circle was not related to COVID-19 testing. Concern for COVID-19 infection or experiencing a COVID-19 diagnosis or death in one's social circles was not associated with sexual intercourse or condom use. DISCUSSION: Urban AYA remained at risk for sexually transmitted infections, and COVID-19, given high baseline community rates of sexually transmitted infections and COVID-19, low condom use, and low COVID-19 risk perception at the time of the survey.