Despite increasing numbers of studies considering children's HRQL, information about variables contributing to parent-child agreement levels remains limited. Authors need to consistently provide evidence for reliability and validity of measures, and design studies to systematically investigate variables that impact on levels of parent-child agreement.

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.

Purpose To obtain input from adolescents with HIV-1 infection to inform the design of a community-based modified directly observed therapy (MDOT) antiretroviral adherence intervention. Methods Pediatric AIDS Clinical Trials Group (PACTG) protocol 1036A conducted three focus groups with 17 adolescents aged 17 to 22 years (10 females, 65% African-American) from three geographically distinct US PACTG sites. Focus group sessions were scripted, audio-taped, and transcribed verbatim. A coding dictionary was developed and validated; Ethnograph v5.08 was used to summarize coded data across and within the three sites. Prevalent themes were identified via frequencies and are reported as percents. Results Adolescents specified: the MDOT provider should be familiar to the participant and empathic; the MDOT location should be mutually agreed upon, flexible, and private; and participant and provider communication should be bidirectional, preferably by phone. Ideally the MDOT program should be continued until adolescents independently demonstrate adherence and include a weaning phase as a test of skill-acquisition. The most commonly endorsed barrier to the proposed program was MDOT would be an invasion of privacy. Initially, following introduction to the purpose of the focus group, all but one adolescent expressed MDOT could benefit someone other than themselves; however, at conclusion of the focus group discussion, a significant shift in openness to the intervention occurred whereby 11 participants indicated they would consider participation in a MDOT program if offered. Conclusions Focus group feedback clarified the feasibility, logistics, and patient concerns about the design and implementation of a proposed MDOT intervention for adolescents with HIV-1 infection who struggle with medication adherence

This paper explores links between the concepts of Quality of Life (QoL) and resilience. First, the definitions of QoL and resilience are explored separately, emphasizing that both concepts have been criticized for a lack of theory with resulting problems in description, prediction and measurement. The similarities and differences are then considered between these two related psychological concepts-resilience and QoL. The need is identified for establishing a theoretical model of QoL, and how elements from resilience research can be beneficially integrated within such a model is discussed. Further empirical work is needed to explore explicitly the relationship between these two related psychological concepts, and establish how well resilience can help explain individual variation in QoL reports in young children.

OBJECTIVES To investigate the frequency and severity of side effects of methylphenidate (MPH) among childhood survivors of acute lymphoblastic leukemia (ALL) and brain tumors (BT), and to identify predictors of higher side effect levels. PARTICIPANTS AND METHODS Childhood cancer survivors (N = 103; BT=54, ALL=49) identified as having attention and learning problems completed a randomized, double-blind, three-week, home cross-over trial of placebo, low-dose MPH (LD; 0.3mg/kg; 10 mg maximum bid) and moderate-dose MPH (MD; 0.6 mg/kg; 20 mg maximum bid). Caregivers completed the Barkley Side Effects Rating Scale (SERS) at baseline and each week during the medication trial. Siblings of cancer survivors (N = 49) were recruited as a healthy comparison group. RESULTS There was a significantly higher number and severity of symptoms endorsed on the SERS when patients were taking MD compared to placebo or LD (ps <.001) but not LD compared to placebo (p =.143 and p =.635, respectively). The number of side effects endorsed on the SERS was significantly lower during all three home-cross over weeks (placebo, LD, MD) when compared to baseline symptom scores (ps <.001). The severity of side effects was also significantly lower, compared to baseline screening, during placebo and LD weeks (p <.001 and p =.003, respectively), but not MD week (p =.925). Both the number and severity of symptoms endorsed at baseline were significantly higher for patients compared to siblings (p <.001 and p =.004, respectively). Female gender and lower IQ were associated with higher side effect levels (ps <.05). CONCLUSIONS MPH is generally well tolerated by childhood cancer survivors. There is a subgroup at increased risk for side effects that may need to be closely monitored or prescribed a lower medication dose. The seemingly paradoxical findings of increased “side effects” at baseline must be considered when monitoring side effects and designing clinical trials.