Healthcare Transition Outcomes Among Young Adults With Perinatally Acquired Human Immunodeficiency Virus Infection in the United States

Abstract

Background: Young adults with perinatally acquired HIV (YPHIVs) living in the United States are transitioning to adult clinical care, yet there is little information on factors that affect transition outcomes.

Methods: YPHIVs aged ≥18 years in the Pediatric HIV/AIDS Cohort Study (PHACS) AMP Up cohort approaching or having completed transition from pediatric to adult healthcare were included. Demographic and clinical characteristics and self-reported ability to self-manage healthcare were compared by transition status, and multivariable logistic regression models examined factors associated with satisfaction with, and retention in, adult clinical care (clinic visit within the previous 6 months).

Results: Most of the 455 YPHIVs, regardless of transition status, reported satisfaction with their clinic and care provider, but many reported antiretroviral medication nonadherence. Of the 124 YPHIVs who had transitioned, 56% had periods of unsuppressed HIV-1 RNA in the year before transition. Those who had transitioned were more likely to report high ability to self-manage their healthcare (ability to manage ≥7 of 8 skills) than those not transitioned. High self-management was associated with retention after transition (odds ratio, 3.40; 95% confidence interval, 1.33-9.12). Higher perceived emotional social support was also associated with retention. Older age at transition was associated with greater satisfaction with provider and clinic.

Conclusions: YPHIVs have positive associations with their clinical care around the time of their transition to adult care, but unsuppressed viral load and suboptimal adherence are a concern. Strengthening skills that increase ability to self-manage care and enhance social support may increase retention in care and improve clinical health.

Keywords: adult healthcare; perinatal HIV infection; self-manage; social support; transition.

Figure 1.

Adjusted associations: Satisfaction with clinic and provider and retention in care among young adults with perinatally acquired HIV who have completed transition (N = 124). High ability to manage healthcare: Ability to manage healthcare assessed with 8 questions, where possible responses are “Yes, I do this,” “No, I need to learn how to do this,” “No someone needs to do this for me,” and “Rather not answer.” High ability = ≥7 of 8 questions answered in the affirmative (“Yes, I do this”). Separate multivariable models were fit for each exposure and outcome. All models adjusted for sex, race, ethnicity, age at entry visit, and research site region. Abbreviations: aOR, adjusted odds ratio; CES-D-10, 10-item Center for Epidemiological Studies–Depression Scale; CI, confidence interval; HIV, human immunodeficiency virus.

Figure 2.

Adjusted associations between ability to manage care and retention in care among young adults with perinatally acquired HIV who have completed transition (N = 124). For each of the 8 individual questions, possible responses were “Yes, I do this,” “No, I need to learn how to do this,” “No someone needs to do this for me,” and “Rather not answer.” “Yes, I do this” was compared with all other responses combined. Separate multivariable models were fit for each individual question, adjusting for sex, race, ethnicity, age at entry visit, and research site region. Abbreviations: aOR, adjusted odds ratio; CI, confidence interval; HIV, human immunodeficiency virus.