Quality of life measurement in paediatric and adolescent populations with HIV: a review of the literature.

PURPOSE: To review the quality and utility of currently available self-report generic quality of life (QOL) and health-related quality of life (HRQOL) measures for use with children and adolescents with human immunodeficiency virus and/or acquired immunodeficiency syndrome (HIV/AIDS). METHODS: Literature searches were conducted to identify QOL and HRQOL measures developed for, adapted for, or otherwise used with paediatric and adolescent populations with HIV/AIDS. The quality of measures (i.e. item generation techniques, instrument properties including reliability, validity and responsiveness) were compared and critically evaluated. RESULTS: Nineteen QOL/HRQOL measures were identified. Item content was generated from the respondent (adult) population in only eight (42%) measures. Seventeen (90%) measures reported internal reliability in the accepted range between 0.70 and 0.90 and four (21%) reported reproducibility statistics in this range. Although validity was reported for 19 (100%) measures, only six (32%) showed evidence for three or more properties, with construct validity being the most commonly reported aspect. The authors of eight (42%) measures reported evidence for responsiveness. CONCLUSIONS: While almost all measures reviewed demonstrated adequate psychometric properties, only one-third demonstrated all aspects of validity, and less than half demonstrated responsiveness. None included paediatric or adolescent populations with HIV/AIDS in their development, neglecting to obtain input from target respondents in item generation to determine what health-related and daily functioning factors are of importance to them. Despite noted limitations, the AUQUEI or the SWED-QUAL appear the best currently available generic measure, and the MQOL-HIV the preferred disease-specific measure, at least for use with older adolescents/young adults.

Psychosocial profile of HIV-infected adolescents in a Southern US urban cohort.

We undertook a retrospective medical chart review of HIV-infected adolescents referred to a Southern US urban comprehensive adolescent HIV clinic between 1992 and 2003 to describe the psychosocial profile of adolescents infected with HIV via high-risk behaviours.Ninety-one adolescents (59 females, 32 males, 95% African-American, median age 17 years) were identified. Common reasons for initial HIV testing included routine prenatal screening (20%), clinical symptoms suggestive of HIV (20%), and recognized risk-related behaviours (20%). Findings included a history of unstable housing in the previous year (27%), running away (29%), knowing someone with HIV (36%), parental substance abuse (reported by youth, 46%), parental abandonment/neglect (30%), high substance use rates (marijuana 33%, tobacco 27%), current/prior STDs (60%), and involvement with the juvenile justice system or incarceration (41%). Sexual abuse/assault was reported by 41%. Previous depression was reported in 15% with approximately half reporting prior hospitalization. An additional 12% of the cohort had current clinical depressive symptoms. We conclude that infections with HIV via high-risk behaviours during adolescence occur in youth with multiple psychosocial stressors. Targeted prevention efforts to reduce these underlying stressors may decrease new adolescent infection. HIV-infected youth are best served in a comprehensive care environment with immediate access to medical care, social work, and psychology/psychiatry services.

Acute health-related quality of life in children undergoing stem cell transplant: I. Descriptive outcomes.

There has been little empirical documentation of the acute effects of bone marrow or stem cell transplant (BMT) on children. In the present study, the responses of 153 children undergoing BMT were assessed in a prospective, longitudinal design. Children were assessed at the time of admission for transplant, then underwent weekly assessments to week +6, followed by monthly assessment to month +6. Data were obtained both by parent report and patient report (for patients age 5 and up) using the BASES scales. The major findings are: (1) children undergoing BMT enter the hospital with an already heightened level of distress (defined by high levels of somatic symptoms and mood disturbance, and low levels of activity) that increases dramatically following conditioning, reaching a peak approximately 1 week following transplant; (2) this increased distress is transient, declining rapidly back to admission levels by week +4 to week +5, followed by a further decline to presumed basal levels by months 4-6; and (3) the trajectories of distress depicted by both parent and child report are remarkably similar, each providing confirmatory support for the validity of the findings. These findings confirm a number of widely held clinical impressions that had not previously been documented empirically, and point to the need for new interventions or more intensive approaches to supportive care aimed at reducing levels of distress during the acute phase of transplant.