Impact of disclosure of HIV infection on health-related quality of life among children and adolescents with HIV infection

Abstract

Background: Little is known concerning the impact of HIV status disclosure on quality of life, leaving clinicians and families to rely on research of children with other terminal illnesses.

Objectives: The purpose of this work was to examine the impact of HIV disclosure on pediatric quality of life and to describe the distribution of age at disclosure in a perinatally infected pediatric population. METHODS. A longitudinal analysis was conducted of perinatally HIV-infected youth >/=5 years of age enrolled in a prospective cohort study, Pediatric AIDS Clinical Trials Group 219C, with >/=1 study visit before and after HIV disclosure. Age-specific quality-of-life instruments were completed by primary caregivers at routine study visits. The distribution of age at disclosure was summarized. Six quality-of-life domains were assessed, including general health perception, symptom distress, psychological status, health care utilization, physical functioning, and social/role functioning. For each domain, mixed-effects models were fit to estimate the effect of disclosure on quality of life.

Results: A total of 395 children with 2423 study visits were analyzed (1317 predisclosure visits and 1106 postdisclosure visits). The median age at disclosure was estimated to be 11 years. Older age at disclosure was associated with earlier year of birth. Mean domain scores were not significantly different at the last undisclosed visit compared with the first disclosed visit, with the exception of general health perception. When all of the visits were considered, 5 of 6 mean domain scores were lower after disclosure, although the differences were not significant. In mixed-effects models, disclosure did not significantly impact quality of life for any domain.

Conclusions: Age at disclosure decreased significantly over time. There were no statistically significant differences between predisclosure and postdisclosure quality of life; therefore, disclosure should be encouraged at an appropriate time.

Figure 1

Distribution of age at disclosure. A, Reported age at disclosure. B, Reported and estimated ages at disclosure, where age at the midpoint between the last predisclosure visit and the first postdisclosure visit are presented for 31 subjects without reported age at disclosure.

Figure 2

Mean age of disclosure reported by caregiver according to year of birth for 395 subjects with both predisclosure and postdisclosure visits (age at the midpoint between the last predisclosure visit and the first postdisclosure visit is presented for 31 subjects without reported age at disclosure).

Figure 3

Predicted scores for 6 QoL domains for 395 subjects with both predisclosure and postdisclosure QoL assessments. All of the models are adjusted for age (5–9, 10–11, 12–13, and ≥14 years), gender, race/ethnicity (white non-Hispanic/other, black non-Hispanic, or Hispanic), CD4% (<14%, 15%–24%, or >25%), viral load (≤400 or >400 copies per mL), CDC class (N/A/B or C), primary caregiver (biological parent, other relative, or other/unknown), primary caregiver education level (grade 1–11 or high school graduate or higher), antiretroviral regimen (HAART with PI, other therapy, or not on ART), number of hospitalizations since last visit (0, 1, or ≥2), negative life-event score (0, 1, or ≥2), disclosure, time since disclosure, and the interaction between disclosure and time since disclosure. Time of disclosure is denoted by the line at month 0.