Key predictors of epilepsy-specific health-related quality of life (HRQOL) in youth with epilepsy.

PURPOSE: Epilepsy-specific health-related quality of life (HRQOL) is an important outcome in youth with epilepsy (YWE). The PedsQL™ Epilepsy Module is the only caregiver-proxy and youth self-report epilepsy-specific HRQOL measure that can be used with youth 2-25 years. Multiple factors affect HRQOL, including epilepsy-specific characteristics, comorbid mental and behavioral health concerns, as well as sociodemographic factors. However, we have not yet examined the cumulative impact of these factors on epilepsy-specific HRQOL in YWE using the PedsQL™ Epilepsy module. METHOD: Youth with epilepsy (n = 281) and their caregivers completed questionnaires focused on sociodemographic factors (e.g., youth biological sex and age), mood/anxiety and behavior symptoms (i.e., Behavioral Assessment Scale for Children - Second Edition; BASC-2, Parent Rating Scale), epilepsy characteristics [e.g., seizure frequency, number of anti-seizure medications (ASMs), ASM side effects, and years since diagnosis], and the PedsQL™ Epilepsy module (subscales: Impact, Cognitive Functioning, Executive Functioning, Sleep, and Mood/Behavior). RESULTS: Hierarchical linear regressions were conducted to examine caregiver-proxy and youth self-reported factors that affect epilepsy-specific HRQOL. Results indicate the strongest key shared predictors of HRQOL in YWE, for both youth and caregiver informants, were mental and behavioral health symptoms. For instance, caregiver-proxy report of YWE HRQOL indicated BASC-2 Externalizing (p < 0.05), Behavioral Symptoms (p < 0.01), and Adaptive Skills (p < 0.001) explained 58 % of the variance in youth Cognitive Functioning HRQOL, while youth self-report of HRQOL indicated that BASC-2 Externalizing (p < 0.01), Behavioral Symptoms (p < 0.05), and Adaptive Skills (p < 0.001) contributed only 36 % of the variance in Cognitive Functioning HRQOL above and beyond the variance explained by sociodemographic and epilepsy-specific characteristics. Similar results were noted for Executive Functioning HRQOL domain, wherein caregiver-proxy report of YWE HRQOL indicated BASC-2 Internalizing (p < 0.01), Behavioral Symptoms (p < 0.001) and Adaptive Skills (p < 0.001) explained 65 % of variance in Executive Functioning, whereas youth self-report of Executive Functioning HRQOL indicated that caregiver-proxy BASC-2 Internalizing (p < 0.001) and Behavioral Symptoms (p < 0.01) explained 34 % of the variance in Executive Functioning HRQOL, above and beyond the variance explained by sociodemographic and epilepsy-specific characteristics. Unique mental and behavioral health predictors of YWE HRQOL were also found for both caregiver-proxy and youth self-report. CONCLUSIONS: Given the integral role of mental and behavioral health symptoms in epilepsy-specific HRQOL, it is critical to address mental and behavioral health symptoms preventatively and proactively to provide YWE with the most optimal health plan, including good seizure control, minimal ASM side effects, and the best possible HRQOL.

Rates of Sexually Transmitted Infection Diagnoses Among US Youth With Perinatally and Nonperinatally Acquired HIV.

BACKGROUND: Of new sexually transmitted infections (STIs) in the United States, 50% occur among youth aged 15 to 24 years. Previous studies among youth with HIV (YHIV) do not distinguish STI trends among individuals with perinatally (YPHIV) and nonperinatally (YNPHIV) acquired HIV. METHODS: Among 3 Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN) studies conducted between 2009 and 2015, we estimated incident diagnoses of trichomonal, bacterial, viral, and overall STIs stratified by sex assigned at birth, mode of HIV acquisition (perinatal [YPHIV] and nonperinatal [YNPHIV]), age (13-17 and 18-24 years), CD4 count (<200, 200-499, and ≥500/µL), and HIV viral load (VL) (<400 and ≥400 copies/mL). RESULTS: Among 3131 YHIV, across the 3 studies, mean (SD) age was 20.6 (2.6) years, 888 (28%) were female, 2498 (80%) had nonperinatal HIV acquisition recorded, and 2298 (73%) were African American/Black. Mean follow-up was 0.9 (0.3) years. Compared with YPHIV, YNPHIV spent less person-time with VL <400 copies/mL (47% vs. 53%) and more time off antiretroviral therapy (49% vs. 15%), and had higher overall STI rates (males, 65.9 vs. 8.5/100 person-years [PY]; females, 54.7 vs. 17.2/100 PY). Among YPHIV, bacterial STIs were higher during person-time spent with VL ≥400 vs. <400 copies/mL (male YPHIV, 10.9 vs. 0.6/100 PY; female YPHIV, 11.2 vs. 2.9/100 PY); no difference was observed among YNPHIV, which may be due to concurrent acquisition of HIV and other STIs and limited follow-up. CONCLUSIONS: Compared with YPHIV, YNPHIV spent less time on antiretroviral therapy and virologically suppressed; YNPHIV also had higher STI diagnosis rates. Very high STI diagnosis rates among YHIV, including among those without virologic suppression, highlight the importance of youth-focused efforts to support durable virologic suppression and identify and treat STIs.

The psychosocial impact of COVID-19 within the first six months of the pandemic on youth with epilepsy and their caregivers.

OBJECTIVES: We assessed the impact of COVID-19 on children with epilepsy and their families, focusing on epilepsy management, family routines, learning, and adherence to Centers for Disease Control and Prevention (CDC) pandemic guidelines (e.g., social distancing, mask wearing) within the first six months of the pandemic. Group differences in COVID-19 impact on families were also examined based on race and ethnicity, being medically and/or geographically underserved, and insurance status. METHODS: Participants (n = 131) included children with epilepsy and their families from two clinical trials. The Impact of COVID-19 on Pediatric Epilepsy Management (ICPEM) measure was developed and administered to caregivers online from April 2020 to September 2020 across four large pediatric hospitals. Administration of the ICPEM occurred both during routine study assessments and an additional acute time point to obtain information early in the pandemic (e.g., April and May 2020). Descriptive statistics and t-tests were used for analyses. RESULTS: Data indicate minor to moderate impact of COVID-19 on pediatric epilepsy management. Caregivers of children with epilepsy reported the most impact on education and social functioning. Adherence to CDC guidelines was reported to be high. Those having public insurance reported greater difficulties obtaining daily anti-seizure medications compared to those with private insurance. CONCLUSIONS: This study presents important initial data regarding the impact of COVID-19 epilepsy management and daily functioning in children with epilepsy and their families. While the acute impact of COVID-19 restrictions appear to be mild to moderate, it is unclear what the long-term impact of the pandemic will be on families of children with epilepsy.

Establishing clinical cutoffs for the PedsQL™ Epilepsy Module.

OBJECTIVE: The purpose of the present study was to establish clinical cutoffs for the PedsQL Epilepsy Module scales by dichotomizing scores into normative or impaired. We predicted that these cutoffs would be useful in identifying children at greater risk for impairments in health-related quality of life (HRQOL) including those who exhibit effects of ongoing seizures, antiepileptic drugs (AEDs), and polytherapy. METHODS: Two hundred and thirty-seven youth (2-18 years old) and their caregivers were recruited from five tertiary care hospitals across the United States. Caregivers and youth (5 years and older) completed the parent- or self-report versions of the PedsQL Epilepsy Module. Caregivers also completed measures of behavior and mood, AED side effects, and executive functioning in children. Clinical cutoffs were calculated in two ways: anchor-based (receiver operating characteristic (ROC) curve) and distribution-based (0.5 standard deviation (SD)). Medical characteristics were abstracted from the medical chart. t-Tests and chi-square tests were used to determine whether children's HRQOL classified as normative or impaired in epilepsy quality of life differed on seizure freedom, AED side effects, and polytherapy. RESULTS: The final clinical cutoffs were as follows for each PedsQL Epilepsy Module subscale (caregiver and child): Impact (Parent = 60.7; Child = 64.39), Cognitive (Parent = 38.11; Child = 50.97), Executive Functioning (Parent = 46.65; Child = 57.15), Sleep (Parent = 42.07; Child = 43.90), and Mood/Behavior (Parent = 54.14; Child = 53.30). Youth with more severe AED side effects, ongoing seizures, and/or on polytherapy were more likely to have impaired quality of life across domains. CONCLUSION: Clinical cutoffs extend this instrument's utility in surveilling common psychosocial comorbidities, tracking changes in functioning over time, and informing clinical decision-making in youth with epilepsy including recommendations for additional assessment and intervention by a range of health providers serving youth with epilepsy (YWE).

Executive functioning phenotypes in youth with epilepsy.

OBJECTIVE: The objectives of this study were to identify executive functioning (EF) phenotypes in youth with epilepsy and to examine whether phenotypes differ on psychosocial and medical outcomes (i.e., absence/presence of seizures in the past three months), health-related quality of life (HRQOL), and emotional and behavioral functioning. METHODS: Youth 5-18 years with diagnosed epilepsy and caregivers completed a battery of questionnaires as part of a larger national validation of the Pediatric Quality of Life (PedsQL) Epilepsy Module. The primary measure of interest was the Behavior Rating Inventory of Executive Function-Parent Form. Medical chart reviews and demographic data were also collected. Latent class analysis was used to identify EF phenotypes. Chi-square and analyses of covariance (ANCOVA) were conducted to examine EF phenotype group differences on seizure outcomes, HRQOL, and behavioral and emotional functioning. RESULTS: Two-hundred and thirty-seven children with epilepsy (Mage = 11.2 years; 56% female; 60% White: Non-Hispanic; 55% experienced seizures in the past three months) and their caregivers participated. Four EF phenotypes were identified: Group 1 - No EF deficits (45% of sample), Group 2 - Global EF deficits (29% of sample), Group 3 - Behavioral Regulation + Working Memory deficits (8% of sample), and Group 4 - Metacognitive deficits (17% of sample). No significant EF phenotype group differences were found for seizure characteristics. The ANCOVAs indicated significant EF phenotype group differences on HRQOL (parent-reported Impact, Cognitive, Sleep, EF, and Mood/Behavior and child-reported Cognitive, Sleep, EF, and Mood/Behavior subscales; ps < .001) and emotional and behavioral functioning (Externalizing, Internalizing, and Behavioral Symptom Index; ps < .001), with the Global EF deficits (Group 2) and Behavioral Regulation + Working Memory deficits groups (Group 3) demonstrating the greatest level of impairment. CONCLUSION: Phenotypic variability in EF is significantly related to patient-reported outcomes. Interventions addressing EF deficits need to be individualized to a child's particular EF phenotype to achieve optimal outcomes.

Vulnerabilities to antiepileptic drug (AED) side effects in youth with epilepsy.

OBJECTIVE: The objective of the study was to investigate the relationship between sociodemographic, seizure-related, behavioral health, and antiepileptic drug (AED) adverse effect variables. The aim of this study was to examine whether there were significant differences on AED adverse effects between youth with normative and subclinical/clinical depressive and/or anxiety symptoms. METHODS: As part of a larger multisite validation study, 231 youth age 5 to 18 years diagnosed with epilepsy and their caregivers were recruited to participate for the current study. Youth ages 8 and older and caregivers of all youth completed the Behavior Assessment System for Children-2 (BASC-2). Caregivers also completed the Pediatric Epilepsy Side Effects Questionnaire (PESQ) and a Background Questionnaire. Medical chart review provided information regarding epilepsy diagnosis and treatment. RESULTS: No differences were observed in the mean scores on AED adverse effects between the group with subclinical/clinical BASC-2 Depressive symptoms and those with average/low depressive symptoms. In contrast, the proportion of youth with subclinical/clinical versus average/low depressive symptoms via caregiver report was significantly different for the cognitive, behavioral, general neurological, and total scale of the PESQ. There was also a larger proportion of youth with self-reported subclinical/clinical depressive symptoms who experienced general neurological adverse effects compared with youth with average/low depressive symptoms who experienced general neurological adverse effects. Findings were consistent for anxiety symptoms. SIGNIFICANCE: Identifying potentially modifiable behavioral health symptoms that exacerbate the expression of AED adverse effects could provide alternative solutions for improved AED tolerability to achieve optimum treatment outcomes.

Parent proxy assessment of sibling quality of life following pediatric hematopoietic cell transplantation.

BACKGROUND: When a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings. Assessment of the quality of life (QoL) of siblings is challenged by their general lack of availability for regular assessment by clinical providers. Thus, the use of parent proxy reporting may be useful. Our aim was to describe the QoL of siblings of HCT survivors, as reported by their parents, as well as to identify parent and family factors associated with lower sibling QoL. METHODS: A cross-sectional study was utilized to assess parent-reported QoL of the HCT recipient's sibling (Short Form (SF)-10 Health Survey for Children and the Pediatric Symptom Checklist (PSC)-17). Parent QoL was assessed using the SF-12. Multivariable linear regression was used to explore hypothesized predictors of sibling QoL, including parent QoL, family impact/function (Impact on Family Scale, Family Adaptability and Cohesion Evaluation Scales, IV, and a question asking about financial problems) while adjusting for demographic and HCT characteristics. RESULTS: Ninety-seven siblings (55% males) with a mean age of 12 years (standard deviation [SD] 4 years) were assessed, representing HCT survivors, who were an average of 5 years (SD 4 years) post-HCT. Neither sibling psychosocial (mean 49.84, SD 10.70, p = 0.87) nor physical health scores (mean 51.54, SD 8.42, p = 0.08) differed from norms. Parent proxies reported behavioral/emotional problems (PSC-17 total score > 15) in 24% of siblings. While parental ratings of their own physical health (SF-12 were higher than norms (mean 53.04, SD 8.17, p = 0.0005), mental health scores were lower (mean 45.48, SD 10.45, p < 0.0001). In multivariable analysis, lower parent emotional functioning and adverse family function were associated with lower sibling QoL, as reported by parents. CONCLUSIONS: While proxy-reported QoL of siblings did not differ significantly from normative data, both parent QoL and family function were associated with sibling QoL. Future research is needed to understand how siblings themselves perceive their QoL following HCT.

Profiles of Risk Among HIV-Infected Youth in Clinic Settings.

Despite the rising number of new HIV infections among youth, few tailored interventions for youth living with HIV (YLH) have been developed and rigorously tested. Developing tailored interventions necessitates identifying different profiles of YLH and understanding how risk and protective factors cluster together. Obtaining this critical information requires accessing a sufficiently large sample of YLH from diverse geographic settings such as those available through the Adolescent Trials Network for HIV Interventions (ATN). We recruited a cross-sectional sample of 1,712 YLH from ATN clinics; participants completed a survey on psychosocial and health factors. Using latent class analysis on nine composite variables representing risk factors, we identified five classes distinguished by substance use, sexual behavior, and pregnancy history and differing on health outcomes. Findings suggest a need for tailored interventions addressing multiple risky behaviors of HIV-infected youth and research to clarify how intervention effectiveness may differ by risk profile.

Barriers to medication adherence in behaviorally and perinatally infected youth living with HIV.

The study explored barriers to antiretroviral medication adherence in perinatally and behaviorally HIV infected adolescents and young adults in a cross-sectional, multisite sample. The study included a subset of a convenience sample from a cross-sectional analysis. Participants were youth with HIV ages 12-24 who were prescribed HIV medication and reported missing medication in the past 7 days (n = 484, 28.4 % of protocol sample). The top barriers were similar for perinatally and behaviorally infected youth, but perinatally infected youth reported significantly more barriers. Forgetting, not feeling like taking medication and not wanting to be reminded of HIV infection were the most common barriers reported. Number of barriers was significantly correlated with percent of doses missed, viral load, and psychological distress for perinatally infected youth and with doses missed, psychological distress, and substance use for behaviorally infected youth. Interventions to improve adherence to HIV medications should not only address forgetfulness and choosing not to take medications, but also consider route of infection.

Adolescent COVID-19 Vaccine Decision-Making among Parents in Southern California.

Adolescent COVID-19 vaccination has stalled at 53% in the United States. Vaccinating adolescents remains critical to preventing the continued transmission of COVID-19, the emergence of variants, and rare but serious disease in children, and it is the best preventive measure available to return to in-person schooling. We investigated parent-adolescent COVID-19 vaccine decision-making. Between 24 February and 15 March 2021, we conducted surveys and 12 focus groups with 46 parent-adolescent dyads in Southern California. Parents and adolescents completed a survey prior to participation in a focus group discussion, which focused on exploring COVID-19 vaccine acceptance or uncertainty and was guided by the 5C vaccine hesitancy model. Parents uncertain about vaccinating adolescents expressed low vaccine confidence and high COVID-19 disease risk complacency. Parents who accepted COVID-19 vaccination for adolescents expressed high confidence in health authority vaccine recommendations, high perceived COVID-19 risk, and collective responsibility to vaccinate children. Additionally, unique pandemic-related factors of vaccine acceptance included vaccinating for emotional health, resuming social activities, and vaccine mandates. Among parents, 46% were willing to vaccinate their adolescent, 11% were not, and 43% were unsure. Among adolescents, 63% were willing to vaccinate. Despite vaccine availability, 47% of adolescents remain unvaccinated against COVID-19. Factors associated with vaccine uncertainty and acceptability inform health care practitioner, school, community, and public health messaging to reach parents and adolescents.

Learning experience design of an mHealth intervention for parents of children with epilepsy.

PURPOSE: The purpose of this paper is to describe the iterative design, development, and evaluation of a novel mHealth learning environment for parents of children with epilepsy. The mHealth learning environment is a component of a broader behavioral intervention called eACT (Epilepsy Adherence in Children and Technology), which seeks to improve antiepileptic drug adherence in children with epilepsy. The eACT mHealth learning environment integrates theoretical principles from the learning sciences with user-centered design methods and advanced learning technologies to provide an efficient and appealing learning experience that is specifically tailored to adult learners. METHODS: The eACT mHealth learning environment was developed by a multidisciplinary team of experts across three major phases including: 1) preparation, 2) iterative design, and 3) iterative development. The preparation phase included developing user personas and conducting focus groups, which identified user needs and use cases for the product. The iterative learning experience design process made use of rapid prototypes in which the product design was improved between versions, resulting in a final design proof. Usability and user experience methods were deployed to evaluate the system during the iterative development phase. RESULTS: Results from three phases of iterative design and development are presented through user personas, usability data, and qualitative analysis. Findings suggest the eACT mHealth learning environment is highly usable and relevant to the unique needs of adult caregivers of children with epilepsy. Findings also suggest that user experience was largely positive. CONCLUSIONS: This paper reveals key insights about how formative learning experience design processes can lead to highly relevant and usable interventions for adult learners.

Desire for perioperative information and parental ethnicity.

OBJECTIVES: To examine the role of ethnicity, language, and socioeconomic variables in parental desire for information regarding children's surgery. AIM: To compare anesthetic and surgical information desired between English- and Spanish-speaking White and Hispanic mothers of children undergoing outpatient surgery. BACKGROUND: Parents report wanting to receive detailed information regarding children's preoperative care; however, variables such as parent ethnicity and language spoken have not been accounted for in understanding desire for information. METHODS/MATERIALS: One hundred and eighty-one mothers of children undergoing outpatient surgery, elective surgery, and general anesthesia were recruited and categorized into one of three groups: English-speaking White (ESW, n=79), English-speaking Hispanic (ESH, n = 63), and Spanish-speaking Hispanic (SSH, n = 39). In addition to providing demographic questionnaire, mothers completed the Parental Desire for Information (PDI) questionnaire, a 14-item measure of surgery and anesthesia-related statements. RESULTS: Overall, mothers desired receiving information about the majority of the items on the PDI. As compared to ESW mothers, SSH mothers and ESH mothers were overrepresented in the 'have a right to know' response option, with significant differences existing in items concerning alternative methods of anesthesia, details of needles used, and location of PACU and OR. CONCLUSIONS: Anesthesiologists should tailor the provision of preoperative information based on ethnicity and language of mothers involved. Ethnic and language differences shown in this study may exist in other populations as well.

Racial/ethnic differences in dietary intake among a diverse sample of adolescents: An experimental study.

BACKGROUND: African-American (AA) and Hispanic/Latina (HL) females have higher obesity prevalence than do non-Hispanic Whites (NHW); this may be due to AA and HL consuming more energy-dense foods in response to stressors. OBJECTIVES: This study examined racial/ethnic differences in dietary intake under controlled conditions (relaxation and stress) in a diverse sample of adolescent females. METHODS: Participants included 120 adolescent females (30% AA, 37% HL and 33% NHW) who participated in a laboratory food intake study. Using a randomized cross-over design, ad libitum food consumption was measured following control/relaxation and social-evaluative stress conditions. Food intake was indexed as consumed calories, added sugars and solid fats. RESULTS: The effect of laboratory conditions on food intake varied by race/ethnicity, such that AA consumed more energy following relaxation than following stress. For NHW and HL, food intake did not differ between conditions. CONCLUSIONS: To the best of our knowledge, these findings are the first to directly observe racial/ethnic differences in food intake in response to acute stress, which may contribute to obesity-related health disparities.

How many parents should we let into the operating room?

OBJECTIVE: This study compared anxiety of children with one and two parents present at anesthesia induction. METHODOLOGY: Baseline measures of parent and child anxiety were obtained; parents were randomly assigned to the two study groups. Validated and reliable tools were used to assess the outcomes of interest. RESULTS: We found that observed anxiety of children as well as compliance of children with the induction process was not different between the two study groups. Parent's anxiety was also evaluated using two-way ANOVA with repeated measures. A group by time interaction was demonstrated and parents in the one-parent group reported significantly higher anxiety than parents in the two-parents group (M = 48.6, SD = 13.1 vs M = 39.7, SD = 11.5, P < 0.02). CONCLUSIONS: We conclude that while allowing two parents into the operating rooms does not affect observed child anxiety, it does reduce parent self-reported anxiety. As the presence of multiple parents during invasive medical procedures is in congruence with family centered-care we recommend that institutions examine this modality.

Healthcare provider-child-parent communication in the preoperative surgical setting.

OBJECTIVES: Although preoperative preparation programs were once common, most children currently undergoing outpatient surgery are first exposed to the hospital on the day of the procedure. It is advocated that these outpatient children undergo the preparation just prior to surgery. AIM: To assess the amount of time that healthcare providers spend with children and families on the day of surgery in the preoperative area. MATERIALS AND METHODS: The study used video infrastructure in the preoperative holding area of Yale New Haven Children's Hospital to record all interactions between children, families, and healthcare providers. Videotapes were coded to characterize and quantify behaviors of healthcare professionals. RESULTS: On the day of surgery, healthcare providers spent medians of 2.75-4.81 min interacting with children and parents in the preoperative area. Families spent a median of 46.5 min in the preoperative area. Healthcare professionals spent the most time in medical talk (averages of 42.5-48.2% of time spent with family) and little time was spent in nonmedical talk (range of 6.2-6.9% of time spent with family). Anesthesiologists and surgeons spent 28% and 18% of the interview in talk to children; admitting nurses spent more of the interview talking to children (43%). CONCLUSIONS: Families interact with healthcare providers for only a small proportion of the time they spent in the preoperative area. This is likely to be a result of increased production pressure in the perioperative settings and has implications for providing preparation for surgery on the morning of the procedure.

Situational temptation for HIV medication adherence in high-risk youth.

Abstract This study explored the role of situational temptation, a component of self-efficacy, in adolescent and young adult (ages 16-24) HIV medication adherence by assessing participants' perceptions of their temptation to miss medications in various situations (e.g., when medication causes physical side effects, when there is fear of disclosure of HIV status). Youth (n = 186; 83% African American) were participants in a multisite clinical trial examining the efficacy of a motivational intervention. Data were collected using computer-assisted personal interviewing. Youth believed the most tempting reasons or situations that might lead them to miss their HIV medications to be symptoms (if the medicine caused you to have other physical symptoms) and sick (if the medicine made you sick to your stomach or made you throw up or if it tasted bad), but these were not significantly associated with nonadherence. This suggests disconnection between youths' expectations of temptation and actual tempting situations associated with nonadherence. Situational temptations associated with nonadherence included lack of social support, needing a break from medications, and not seeing a need for medications. Interventions to improve adherence should consider perceptions of HIV medications, particularly the benefits of taking medications and expectations of physical symptoms. Interventionists and clinicians should consider situations that may tempt youth to miss doses of medication and help youth gain insight into these temptations. Emerging methods, such as Ecological Momentary Assessment (e.g., daily diaries, cell phone text messaging), may be useful in gaining insight into the day-to-day experience of youth living with HIV.

Recruiting and retaining couples for an HIV prevention intervention: lessons learned from the PARTNERS project.

Intervening with both members of a couple has been recommended as an important strategy for human immunodeficiency virus prevention. Analyses of focus groups and in-depth interviews with project personnel involved in recruitment and retention for the Partners Against Risk-Taking: A Networking and Evaluation Research Study project identified, at the termination of the project, barriers and facilitators to recruiting couples. Barriers included logistical problems of coordinating two people's schedules, sensitivity of the topic and challenges related to recruitment efforts focused on one partner only. Strategies to overcome such barriers were to increase availability of project personnel and recruit both partners simultaneously, with recruitment teams consisting of men and women. Challenges related to recruiting and retaining couples remain significant and should be considered before undertaking couples interventions.

A conceptual model of women's condom use intentions: Integrating intrapersonal and relationship factors.

We developed and tested a multifaceted model of condom use intentions with cross-sectional data from 435 heterosexual women at risk for HIV/STIs. In addition to traditional intrapersonal variables drawn from established models of HIV prevention (e.g. attitudes, norms, self-efficacy), the present study examined the role of relationship factors and dynamics (i.e. relationship commitment, duration, condom use and pregnancy prevention decision-making) in shaping condom use intentions. In some cases, relationship variables were directly associated with condom use intentions. In other cases their effects on condom use intentions were mediated by intrapersonal constructs. The final model accounted for 66% of the variance in condom use intentions and confirmed the importance of integrating intrapersonal variables and relationship characteristics and dynamics in understanding women's intentions to use condoms. These results offer important insights for the design of interventions directed at promoting condom use among young women at risk for HIV/STIs and underscore the need to design prevention programs that address relationship characteristics and dynamics.

He said, she said: concordance between sexual partners.

BACKGROUND: Most studies of sexual behavior and risk are based on self-reports of individuals. GOAL: The goal of this study was to assess interpartner concordance on self-reported sexual behavior, condom use, and relationship characteristics; and agreement between individuals' perceptions of their partners' sexual risks and the partners' actual reports. STUDY DESIGN: Interviews were conducted separately but concurrently with 112 heterosexual couples at increased risk for HIV/sexually transmitted infections recruited through women at clinics and community locations. RESULTS: Couples were concordant on reports of relationship characteristics (kappa > or = 0.84), sexual behavior, and condom use (r > or = 0.62), but disagreed on who has more power and sexual decision-making dominance (kappa < or = 0.26). We found substantial agreement between men's perceptions and their partners' reported risky behavior (kappa = 0.62), but only fair agreement between women's perceptions and their partners' reports (kappa = 0.30). CONCLUSION: Individual self-reports could be reliable measures of sexual behavior. Additionally, prevention interventions need to address women's misperceptions about their partners' risky behaviors.

Joint range-of-motion limitations among young males with hemophilia: prevalence and risk factors.

Chronic joint disease from repeated bleeding into joints is a serious complication of hemophilia. To measure the extent of and to identify risk factors for deviations from normal in joint range of motion (ROM), we used cross-sectional data collected from 4343 males with hemophilia aged 2 to 19 years who received care at 136 US hemophilia treatment centers (HTCs). Factors examined included age, race/ethnicity, family history, insurance status, age at diagnosis and first HTC visit, frequency of HTC visits, hemophilia type, bleeding frequency, prophylaxis use, inhibitor status, body mass index (BMI), and recent orthopedic procedures. Trained personnel using a standard protocol obtained ROM measurements on 10 joints (hips, knees, shoulders, elbows, and ankles). Analyses used multiple linear regression to model overall ROM limitation separately by disease severity. For persons in all severity groups, joint ROM limitation was positively associated with older age, nonwhite race, and increased BMI. For those with severe disease, ROM limitation was also positively associated with number of bleeds and was greater for those with inhibitors or recent orthopedic procedures. We conclude that ROM limitations begin at an early age, especially for those with severe and moderate disease, and that BMI is an important, potentially modifiable risk factor.