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Health-related quality of life of perinatally HIV-infected young people: a longitudinal study
A M Ter Haar1, M Van den Hof1, H J Scherpbier1
1Emma Children's Hospital, Amsterdam University Medical Centers, Academic Medical Center, University of Amsterdam, Pediatric Infectious Diseases, Amsterdam, Netherlands.
Insights
Young people perinatally infected with HIV (pHIV) maintain good health-related quality of life (HRQOL) over five years, similar to HIV-uninfected peers. High-quality healthcare and HRQOL monitoring are key for sustained well-being in pHIV youth.
Area of Science:
- Pediatric Health
- Infectious Diseases
- Quality of Life Research
Background:
- Young individuals perinatally infected with HIV (pHIV) face risks to their health-related quality of life (HRQOL).
- Previous studies indicated no overall HRQOL difference between pHIV and HIV-uninfected (HIV-) youth, but a higher prevalence of impaired HRQOL in the pHIV group.
- The NOVICE-cohort provided initial insights into neurological, visual, and cognitive performance in HIV-infected children.
Purpose of the Study:
- To longitudinally compare the change in HRQOL over a 5-year period between young people perinatally infected with HIV (pHIV) and HIV-uninfected (HIV-) controls.
- To assess HRQOL trends in adolescents and young adults with perinatal HIV infection.
- To evaluate the long-term impact of perinatal HIV on quality of life in a well-characterized cohort.
Main Methods:
- Utilized the Pediatric Quality of Life Inventory (PedsQL)™ 4.0 for repeated HRQOL assessments.
- Compared HRQOL scores between pHIV and HIV- groups at two time points, approximately five years apart.
- Employed Linear Mixed-Effects Models (LMEM) to analyze changes in HRQOL over time, controlling for covariates.
Main Results:
- At baseline (mean age 13.1 years), pHIV youth scored higher on Emotional functioning and Total scale score compared to HIV- controls.
- After five years (mean age 17.6 years), pHIV youth continued to score higher on most PedsQL scales, excluding Social functioning.
- No significant differences in the change of HRQOL over time were detected between the pHIV and HIV- groups across any PedsQL scales.
- pHIV participants did not differ significantly from the general Dutch population norm on HRQOL at either assessment point.
Conclusions:
- Young people with perinatal HIV receiving high-quality healthcare, including HRQOL monitoring, demonstrate sustained good HRQOL into adolescence and young adulthood.
- Longitudinal data suggest that effective management of perinatal HIV infection supports favorable quality of life outcomes.
- The findings underscore the importance of comprehensive care in maintaining the well-being of youth living with HIV.
Abstract:
Young people perinatally infected with HIV (pHIV) are at risk of a lowered health-related quality of life (HRQOL). Previous evaluation of the NeurOlogical, VIsual and Cognitive performance in HIV-infected Children (NOVICE)-cohort showed no difference in HRQOL between pHIV and matched HIV-uninfected controls (HIV-), yet a higher percentage of pHIV had impaired HRQOL. The aim of this study is to compare the change over time in HRQOL of pHIV to HIV- over a 5-year period. We used the Pediatric Quality of Life Inventory (PedsQL)™ 4.0 to repeat HRQOL assessment. High PedsQL scores indicate good HRQOL. Fifteen/33 (45.5%) pHIV and 17/37 (45.9%) HIV- completed both assessments. At the first assessment, the mean age was 13.1 years (range 8.0-18.4). PHIV scored higher than HIV- on Emotional functioning and on Total scale score. After five years, the mean age was 17.6 years (range 12.1-22.8). PHIV scored higher than HIV- on all scales, except Social functioning. PHIV did not differ significantly from the Dutch norm on either time-point. LMEM showed no difference in change over time for any of the PedsQL scales. In this study, young people with pHIV receiving high-quality health care, including monitoring of HRQOL, remain to experience a good HRQOL.
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