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Objective. Perinatal outcomes and related risk factors of single vs twin pregnancy complicated with gestational diabetes mellitus (GDM) were clarified, providing evidence for developing preventive measures. Methods. The Chinese National Knowledge Infrastructure (CNKI), China Biology Medicine (CBM), CQVIP, Wanfang, and PubMed databases were searched for published research on the perinatal outcomes and risk factors of single and twin pregnancy complicated by GDM from 2000 to 2021. The quality of the included literature was evaluated according to the Newcastle-Ottawa Scale (NOS). Meta-analysis of the included literature was conducted using RevMan5.3 software. Results. Relative to a single pregnancy group, infertility, gestational weight gain, and family history of diabetes presented statistical significance in the twin pregnancy group ( P < 0.05 ); gestational age at delivery, cesarean section, preterm birth < 37 weeks, and preeclampsia presented statistical significance in the twin pregnancy group ( P < 0.05 ); and neonatal birth weight, small for gestational age (SGA), neonatal asphyxia, neonatal hypoglycemia, neonatal respiratory distress syndrome (NRDS), neonatal hyperbilirubinemia, and neonatal death presented statistical significance in the twin pregnancy group ( P < 0.05 ). Conclusion. Infertility, prenatal weight gain, and diabetes in the family are all risk factors for postpartum impaired glucose metabolism in pregnant women with GDM who are carrying twins. The gestational age at delivery, cesarean section, preterm birth < 37 weeks, and preeclampsia of twin pregnant women with diabetes will affect the perinatal status of twin pregnant women. Neonatal birth weight, SGA, neonatal asphyxia, neonatal hypoglycemia, NRDS, neonatal hyperbilirubinemia, neonatal death, etc. should be paid special attention in the perinatal process.

Risk prediction models are important to identify survivors of childhood cancer who are at risk of experiencing poor health-related quality of life (HRQOL) as they age.To develop and validate prediction models for a decline in HRQOL among adult survivors of childhood cancer.This prognostic study included 4755 adults from the Childhood Cancer Survivor Study (CCSS) diagnosed between January 5, 1970, and December 31, 1986, who completed baseline (time 0 [November 3, 1992, to August 28, 2003]) and 2 follow-up (time 1 [February 12, 2002, to May 21, 2005] and time 2 [January 6, 2014, to November 30, 2016]) surveys. Data were analyzed from June 19, 2019, to February 2, 2022.Sociodemographic, lifestyle, and emotional factors, and chronic health conditions (CHCs) were assessed at time 0 and time 1, and neurocognitive factors were assessed at time 1 to predict HRQOL at time 2 and a decline in HRQOL between time 1 and time 2. Impaired health states were defined as CHC grades 2 to 4 using the modified Common Terminology Criteria for Adverse Events, version 4.03, and mental and neurocognitive status as 1 SD or more below reference levels.Health-related quality of life was operationalized using the Medical Outcomes Study 36-Item Short Form Health Survey Physical (PCS) and Mental (MCS) Component Summary and classified by optimal (≥40) or suboptimal (40) at each point (main outcome). A decline in HRQOL was defined as a change from optimal to suboptimal between time 1 and time 2. Multivariable logistic regression identified factors associated with HRQOL decline. The cohort was randomly split into training (80%) and test (20%) data sets for model development and validation; the area under the receiver operating characteristic curve was used to evaluate prediction performance.A total of 4755 adults (mean [SD] age at time 0, 24.3 [7.6] years; 2623 [55.2%] women) were included in the analysis. Between time 1 and time 2, 285 of 3294 survivors (8.7%) had declining PCS and 278 of 3294 (8.4%) had declining MCS. Risk factors associated with PCS decline included female sex (odds ratio [OR], 1.67 [95% CI, 1.25-2.24]), family income less than $20 000 vs $80 000 or more (OR, 2.00 [95% CI, 1.21-3.30]), presence of CHCs (OR for neurological, 2.16 [95% CI, 1.51-3.10]; OR for endocrine, 2.25 [95% CI, 1.44-3.52]; OR for gastrointestinal tract, 1.89 [95% CI, 1.32-2.69]; OR for respiratory, 1.66 [95% CI, 1.06-2.59]; OR for cardiovascular, 1.53 [95% CI, 1.14-2.06]), and depression (OR, 1.79 [95% CI, 1.20-2.67]). Risk factors associated with MCS decline included unemployment vs full-time employment (OR, 1.68; [95% CI, 1.19-2.38]), current vs never cigarette smoking (OR, 2.03 [95% CI, 1.37-3.00]), depression (OR, 4.29 [95% CI, 2.44-7.55]), somatization (OR, 1.63 [95% CI, 1.05-2.53]), impaired task efficiency (OR, 1.90 [95% CI, 1.34-2.68]), and impaired organization (OR, 1.67 [95% CI, 1.12-2.48]). The areas under the receiver operating characteristic curve for the test models were 0.74 (95% CI, 0.67-0.81) for declining PCS and 0.68 (95% CI, 0.60-0.75) for declining MCS.In this prognostic study of adult survivors of childhood cancer who experienced declining HRQOL, CHCs were associated with a decline in physical HRQOL, whereas current smoking and emotional and neurocognitive impairment were associated with a decline in mental HRQOL. These findings suggest that interventions targeting modifiable risk factors are needed to prevent poor HRQOL in this population.

Background: To the authors' knowledge, few studies to date have examined long-term neurocognitive outcomes in survivors of childhood soft-tissue sarcoma. Methods: A total of 150 survivors (41% of whom were female with a mean current age of 33 years [SD, 8.9 years] and a time since diagnosis of 24 years [SD, 8.7 years]) and 349 community controls (56% of whom were female with a mean current age of 35 years [SD, 10.2 years]) completed comprehensive neuropsychological testing, echocardiography, electrocardiography, pulmonary function tests, endocrine evaluation, and physical examination. Patient-reported outcomes of health-related quality of life (HRQOL) and social attainment were collected. Survivors were compared with norms and controls on neurocognitive outcomes using general linear models, and on HRQOL and social attainment using modified Poisson models. The impacts of treatment and chronic health conditions on outcomes were examined using multivariable general linear models (effect size was expressed as unstandardized β estimates that reflected the unit of change from a mean of 0 and an SD of 1) and modified Poisson models (effect size expressed as relative risks). Results: Compared with controls and population norms, survivors demonstrated lower performance on measures of verbal reasoning (mean z score, −0.45 [SD, 1.15]; P

PTCH1 and PTCH2 are associated with nevoid basal cell carcinoma syndrome and basal cell carcinoma. We determined the prevalence of their common and rare variants in 877 patients with various reproductive cancers and 296 healthy subjects. Using targeted next-generation sequencing, we found significantly statistical associations of the minor alleles at seven common variants of PTCH1 and PTCH2 with a decreased risk of reproductive cancers (P = 9.69 × 10

To understand the influence of medical insurance policy reforms in Guangxi on the hospitalization expenses of breast cancer patients by analyzing the composition and changing trend in breast cancer diagnosis and treatment expenses in the Guangxi Medical University Cancer Hospital, and to provide the evidence for the improvement of medical insurance policy reform.A total of 3 950 breast cancer patients were collected from 2014 to 2017 and analyzed. Kruskal-Wallis test and multiple linear regression model were used to discuss the breast cancer related epidemiology and analyze the composition of hospitalization expenses and its influential factors.The median hospitalization cost of breast cancer patients in our hospital from 2014 to 2017 was 29 266.94 Chinese Yuan. Single factor analysis showed that the impact of year, hospitalization days, age, payment method, tumor stage, and treatment method on hospitalization cost was significant (allReasonably controlling hospitalization days and actively promoting the integration of urban and rural medical insurance can effectively reduce the economic burden for breast cancer patients.

OBJECTIVE: Although exposure to air pollution and pollen is associated with asthma exacerbation and increased healthcare utilization, longitudinal effects of fine particulate matter 2.5 (PM(2.5)), ozone (O(3)), and pollen exposure on asthma control status in pediatric patients are understudied. This study investigated effects of exposure to PM(2.5), O(3), and pollen on asthma control status among pediatric patients with asthma. METHODS: A total of 229 dyads of pediatric patients with asthma and their parents were followed-up for 15 months. The Asthma Control and Communication Instrument was used to measure asthma control, which was reported weekly by parents during a 26-week period. PM(2.5) and O(3) data were collected from the U.S. Environmental Protection Agency Air Quality System. Pollen data were obtained from Intercontinental Marketing Services Health. Mean air pollutant and pollen exposures within 7 days prior to the reporting of asthma control were used to estimate weekly exposures for each participant. Linear mixed-effects models were performed to test associations of PM(2.5), O(3), and pollen exposure with asthma control status. Sensitivity analyses were performed to evaluate the robustness of findings by different exposure monitoring days per week and distances between monitoring sites and participants’ residences. RESULTS: Elevated PM(2.5) concentration and pollen severity were associated with poorer asthma control status (p

To examine prevalence and predictors of neurocognitive outcomes, social attainment, emotional distress, and health-related quality of life (HRQOL) in long-term survivors of pediatric Wilms tumor (WT). One hundred fifty-eight WT survivors (59% female; mean [SD] age 33 [9.1] years; time since diagnosis 29 [9.1] years) and 354 community controls (55.6% female; 35 [10.2] years) completed comprehensive neuropsychological testing and physical examination, including echocardiography/electrocardiography, pulmonary function tests, and endocrine evaluation. Self-report of emotional distress, HRQOL, and social attainment were collected. Impairment was defined in relation to both controls and normative data. Generalized linear models were developed to examine impact of treatment and chronic health conditions on outcomes. WT survivors performed poorer than norms and controls in 6 of 16 cognitive variables and 1 of 8 HRQOL variables, with scores ranging from − 0.64 (mathematics) to − 0.21 (verbal fluency) standard deviations below expectations. Compared to controls, WT survivors were less likely to graduate college (odds ratio 2.23, 95% confidence interval 1.46–3.41) and had more moderate to severe neurologic conditions (18.4% vs 8.2%, p

OBJECTIVES: To identify pediatric patient-reported outcomes (PROs) that are associated with chronic conditions and to evaluate the effects of chronic disease activity on PROs. STUDY DESIGN: Participants 8–24 years-old and their parents were enrolled into 14 studies that evaluated PROMIS® PROs across 10 chronic conditions--asthma, atopic dermatitis, cancer, cancer survivors, chronic kidney disease, Crohn’s disease, juvenile idiopathic arthritis, lupus, sickle cell disease, and type 1 diabetes mellitus. PRO scores were contrasted with the United States general population of children using nationally representative percentiles. PRO-specific coefficients of variation were computed to illustrate the degree of variation in scores within versus between conditions. Condition-specific measures of disease severity and Cohens d effect sizes were used to examine PRO scores by disease activity. RESULTS: Participants included 2,975 child respondents and 2,392 parent respondents who provided data for 3,409 unique children: 52% were 5–12 years-old, 52% female, 25% African-American/Black, and 14% Hispanic. Across all 10 chronic conditions, children reported more anxiety, fatigue, pain, and mobility restrictions than the general pediatric population. Variation in PRO scores within chronic disease cohorts was equivalent to variation within the general population, exceeding between-cohort variation by factors of 1.9 (mobility) to 5.7 (anxiety). Disease activity was consistently associated with poorer self-reported health, and these effects were weakest for peer relationships. CONCLUSIONS: Chronic conditions are associated with symptoms and functional status in children and adolescents across 10 different disorders. These findings highlight the need to complement conventional clinical evaluations with those obtained directly from patients themselves using PROs.

PURPOSE: To evaluate the impact of co-morbidities on financial hardship in adult cancer survivors and the role of health insurance and a usual source of care (i.e., a particular doctor’s office/health center/other place that the person usually goes if he/she is sick or needs advice) in relieving this impact. METHODS: Using the Medical Expenditure Panel Survey, we estimated prevalence of two financial hardships, out-of-pocket (OOP) burden and financial worry, among 1,196 adult cancer survivors. A modified Charlson comorbidity index (CCI) assessed co-morbidities, which represent a medical event (e.g., a doctor’s appointment) associated with co-morbid conditions within the past 1 year. Multivariable logistic regression tested the influence of health insurance and a usual source of care on associations of co-morbidities with financial hardship by middle/high vs. low-income families and by working vs. retirement-age individuals. RESULTS: Years since cancer diagnosis ranged from 0–76 years (mean: 10.3, SD: 9.8); 10% and 25% of survivors experienced OOP burden and financial worry. For OOP burden, increased CCI was a risk factor among survivors of low-income families, ORs: 1.91 (95%CI: 1.06, 3.46) for a CCI 1–2 and 3.37 (95%CI: 1.72, 6.61) for a CCI ≥3 vs. CCI of 0. For financial worry, increased CCI was a risk factor among working-age survivors; ORs: 1.58 (95%CI: 1.02, 2.47) for a CCI 1–2 and 2.15 (95%CI: 1.19, 3.87) for a CCI ≥3 vs. CCI of 0. However, having health insurance and a usual source of care did not mitigate impact of co-morbidities on financial hardship (P-values >0.05). CONCLUSIONS: Impact of co-morbidities on OOP and financial worry burden was greatest in survivors of low-income families and working-age, respectively. Health insurance and a usual source of care did not relieve the impact of co-morbidities on financial hardship. IMPLICATIONS: Effective strategies are warranted to mitigate financial hardship for survivors.

The purpose of this study was to refine an instrument to capture the perceived needs of parents whose children are seriously ill. This article describes the psychometric properties of the Parents' Needs Scale (PNS), a translated, revised 22-item short form from an original instrument that was developed and tested on parents of children with cancer in Hong Kong.The study was done in three stages that included (a) factor analysis of two samples recruited from clinics in Northern Virginia of parents of children with cancer (n = 74) and end stage renal disease (ESRD) (n = 30); (b) known groups validity testing with two groups of parents recruited in a parallel study on children with special needs (n = 15) and a control group of well children (n = 23); and (c) concurrent validity testing on the subsample of parents of children with special needs using the known measure of Impact on the Family Scale (IFS). Data collection for the stages included mailed questionnaires and follow-up telephone interviews.Exploratory factor analysis using the common factor approach identified two domains: (1) needs related to my child's illness and (2) needs unrelated to my child's illness. The factorial structure was followed by item scaling tests to determine item-level convergence and discriminative validity, as well as scale reliability for the two domains (Cronbach's alpha = 0.93 and 0.90). Domain-level discriminant validity tests yielded significant differences on several expected characteristics of the child and/or family based on the literature. The final 22-item scale was reworded and used to establish known groups validity by comparing the two groups of children with acute illnesses from the previous study with two control groups of parents of children who were well or children with special needs but not acutely ill, yielding significant results on both factors (p 0.001). A final test of concurrent validity was performed on the parents of children with special needs measures of parent need with their reported impact on the family yielding significant correlations on predicted variables.The PNS can measure parents' needs with demonstrated psychometric validity and reliability.

Objective How family environment and parental factors affect health status and symptoms in childhood cancer survivors is understudied. We examined the influence of family cohesion, parent distress, and overprotection on child symptom burden and health-related quality of life (HRQOL) and family strain in survivors of childhood acute lymphoblastic leukemia. Methods Parents of 213 children treated with chemotherapy only completed a survey when survivors were at least 5-year postdiagnosis. Family Environment Scale, Brief Symptom Inventory-18, Parent Protection Scale, Pediatric Quality of Life Inventory, and Impact on Family were used to assess family cohesion, parental distress, overprotection, child symptom burden and HRQOL, and family strain, respectively. Path analysis was conducted to quantify effects of family cohesion on family strain through parental distress, overprotection, child symptoms, and HRQOL. Results Lower family cohesion (β = 0.06, 95% CI, 0.01-0.13), higher parental distress (β = 0.35, 95% CI, 0.20-0.45), and overprotection (β = 0.17, 95% CI, 0.01-0.32) were associated with more child symptom burden. More symptom burden were associated with poorer child HRQOL (β = 0.66, 95% CI, 0.57-0.75), which in turn was associated with more family strain (β = 0.11, 95% CI, 0.01-0.22). Lower maternal education was associated with overprotection (β = -0.23, 95% CI, -0.33 to -0.12), more child symptoms (β = -0.30, 95% CI, -0.41 to -0.16), poorer child HRQOL (β = -0.36, 95% CI, -0.46 to -0.21), and more family strain (β = -0.15, 95% CI, -0.23 to -0.08). Conclusions Family and parental factors contributed to health outcomes of childhood acute lymphoblastic leukemia survivors. Interventions to enhance family cohesion, decrease parental distress and overprotection, and ameliorate child symptoms may improve family functioning.

PURPOSE: To determine the evolution of neurocognitive problems from therapy completion to long-term follow-up in survivors of childhood acute lymphoblastic leukemia treated with chemotherapy-only. METHODS: We evaluated whether attention problems observed at therapy completion evolve into long-term executive dysfunction in 158 survivors treated on a single institution protocol. Treatment data (high dose intravenous methotrexate exposure [serum concentration] and triple intrathecal chemotherapy injections) were collected. Parent-report of behavior and direct cognitive testing of survivors was conducted at end of therapy, and survivors completed neurocognitive testing when >5 years post-diagnosis. RESULTS: At end of chemotherapy, survivors (52% female; mean age 9.2 years) demonstrated higher frequency of impairment in sustained attention (38%) and parent-reported inattention (20%) compared to population expectations (10%). At long-term follow-up, survivors (mean age 13.7 years; 7.6 years post-diagnosis) demonstrated higher impairment in executive function (flexibility 24%, fluency 21%), sustained attention (15%), and processing speed (15%). Sustained attention improved from end of therapy to long-term follow-up (p0.05). The direct effect of chemotherapy exposure predicted outcomes at both time points. CONCLUSIONS AND IMPLICATIONS FOR CANCER SURVIVORS: Survivors should be monitored for neurocognitive problems well into long-term survivorship, regardless of whether they show attention problems at the end of therapy. Treatment exposures are the best predictor of long-term complications.

Poor asthma control in children is related to impaired patient-reported outcomes (PROs; eg, fatigue, depressive symptoms, anxiety), but less well studied is the effect of PROs on children's school performance and sleep outcomes. In this study we investigated whether the consistency status of PROs over time affected school functioning and daytime sleepiness in children with asthma.Of the 238 children with asthma enrolled in the Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Asthma Study, 169 children who provided survey data for all 4 time points were used in the analysis. The child's PROs, school functioning, and daytime sleepiness were measured 4 times within a 15-month period. PRO domains included asthma impact, pain interference, fatigue, depressive symptoms, anxiety, and mobility. Each child was classified as having poor/fair versus good PROs per meaningful cut points. The consistency status of each domain was classified as consistently poor/fair if poor/fair status was present for at least 3 time points; otherwise, the status was classified as consistently good. Seemingly unrelated regression was performed to test if consistently poor/fair PROs predicted impaired school functioning and daytime sleepiness at the fourth time point.Consistently poor/fair in all PRO domains was significantly associated with impaired school functioning and excessive daytime sleepiness (Ps .01) after controlling for the influence of the child's age, sex, and race/ethnicity.Children with asthma with consistently poor/fair PROs are at risk of poor school functioning and daytime sleepiness. Developing child-friendly PRO assessment systems to track PROs can inform potential problems in the school setting.

Aim: To investigate the association between NSUN2/IGF-II signature and ovarian cancer survival. Methods: Using a publicly accessible dataset of RNA sequencing and clinical follow-up data, we performed Classification and Regression Tree and survival analyses. Results: Patients with NSUN2 high IGF-II low had significantly superior overall and disease progression-free survival, followed by NSUN2 low IGF-II low, NSUN2 high IGF-II high and NSUN2 low IGF-II high (p

Background: To compare associations of symptom prevalence, chronic conditions, and health-related quality of life (HRQOL) between cancer survivors and non-cancer individuals using the U.S. National Health Interview Survey. Methods: Study samples comprised 604 survivors and 6,166 non-cancer individuals. Symptoms included sensation abnormality, pain, fatigue, cognitive disturbance, depression, and anxiety. Physical and mental HRQOL was measured by the Patient-Reported Outcomes Measurement Information System. Results: Compared with non-cancer individuals, survivors had higher prevalence in sensation abnormality (OR = 2.4; 95% CI = 1.9 to 3.0), pain (OR = 2.1; 95% CI = 1.7 to 2.6), fatigue (OR = 1.4; 95% CI = 1.1 to 1.8), and decremented physical HRQOL (difference = −3.7; 95% CI = −4.7 to −2.6). The prevalence of individual symptoms was significantly associated with decremented physical HRQOL [range = −5.9 (anxiety) to −8.9 (pain)] and mental HRQOL [range = −4.7 (sensation) to −8.4 (depression)]. The association between cancer experience and physical and mental HRQOL was chiefly explained by the prevalence of six symptoms and presence of chronic conditions. Pain (β = −4.0; 95% CI = −4.5 to −3.6) and ≥2 chronic conditions (β = −9.2; 95% CI = −10.2 to −8.2) significantly decremented physical HRQOL. Depression (β = −5.2; 95% CI = −5.8 to −4.6) and ≥2 chronic conditions (β = −3.3; 95% CI = −4.4 to −2.3) significantly decremented mental HRQOL. Conclusions: Cancer survivors experience more symptom burden than non-cancer individuals, which is associated with more chronic conditions and impaired HRQOL. Impacts: Interventions to manage symptom prevalence especially for older cancer survivors and survivors with more chronic conditions may improve their HRQOL outcomes. Cancer Epidemiol Biomarkers Prev; 26(7); 1124–32. ©2017 AACR.

Enterovirus 71 (EV71) is one of the major pathogens that cause severe enteroviral infections. Our aim was to study the behavioral and household risk factors for its serious complications.Between May 2011 and November 2012, we enrolled children who had symptoms of EV71 infection from six hospitals in Taiwan. The caregivers of each patient were interviewed to determine their hand hygiene habits in relation to EV71 infection. The severity of EV71 infection was classified as follows: Stage 1, hand-foot-mouth disease or herpangina; Stage 2, meningitis or myoclonic jerk; Stage 3A, encephalitis; Stage 3B, cardiopulmonary failure. Stages 2 to 3B were defined as severe EV71 infection. Children with Stages 3A and 3B infection were designated as the critical group.A total of 399 patients had laboratory-confirmed EV71 infection. Three risks factors were associated with the different degrees of severity in EV71 infection. Children2 years old had much greater risks for severe EV71 infection [odds ratio (OR) 1.8; 95% confidence interval (CI), 1.2-2.8], delayed medical evaluation for critical infection (OR 9.4; 95% CI, 3.6-24.1), and developmental retardation for cardiopulmonary failure (OR 8.3; 95% CI, 2.0-33.7). Among all the habits and household factors, caregivers in the critical group had a significantly lower rate in terms of cleaning the faucet after washing their hands (OR 2.63; 95% CI, 1.14-6.08).Children2 years old, developmental retardation, and delayed medical intervention were associated with severe EV71 infection. Cleaning water faucets after hand washing was a protective habit that reduced the risk of complications.

We compared health-related quality of life (HRQOL) between adult survivors of childhood cancer and siblings by investigating the mediating role of emotional distress on HRQOL assessment, and examining the extent to which emotional distress affected the item responses of HRQOL measures given the same underlying HRQOL (i.e., measurement non-invariance). Cancer survivors (7103) and siblings (390) enrolled in Childhood Cancer Survivor Study who completed the SF-36 measuring HRQOL and the Brief Symptom Inventory-18 measuring anxiety, depression, and somatization were analyzed. Multiple Indicators & Multiple Causes modeling was performed to identify measurement non-invariance related to emotional distress on the responses to HRQOL items. Mediation analysis was performed to test the effects of cancer experience on HRQOL accounting for the mediating role of emotional distress. Twenty-nine percent, 40%, and 34% of the SF-36 items were identified with measurement non-invariance related to anxiety, depression, and somatization, respectively. Survivors reported poorer HRQOL than siblings in all domains (ps

To examine item-level response shift associated with the change in asthma-related health state (i.e., change in asthma control status and global rating of change (GRC) in breathing problems).Study sample comprised 238 asthmatic children who were between 8 and 17.9 years and completed the Pediatric Asthma Quality of Life Questionnaire (PAQLQ) symptoms, emotion function, and activity limitation domains at baseline and a follow-up assessment. Structural equation modeling was implemented to assess item-level response shift associated with the change in asthma-related health state with the adjustment for the influence of confounding variables. The magnitude of item-level response shift and its influence on the change of domain scores was estimated using Cohen's effect sizes.We found no instances of item-level response shift. However, two items were identified with measurement bias related to GRC due to breathing problems. Specifically, asthmatic children with better/about the same GRC due to breathing problems reported lower scores for one item in the emotional domain at follow-up compared to those with deteriorated GRC due to breathing problems. In addition, asthmatic children with better/about the same GRC due to breathing problems reported better scores for another item in the symptom domain at baseline compared to those with deteriorated GRC due to breathing problems. The impact of measurement bias was small and did not bias the change of domain scores over time.No item-level response shift, but two instances of measurement bias, appears in asthmatic children. However, the impact of these measurement issues is negligible.

Objectives Few studies have investigated the complex relationship among asthma control, sleep problems, and health-related quality of life (HRQOL) among children with asthma. This study aimed to test the longitudinal effect of asthma control status on asthma-specific HRQOL through the mechanism of nighttime sleep quality and daytime sleepiness. Methods The Patient-Reported Outcomes Measurement Information System (PROMIS ® ) Pediatric Asthma Study included 229 dyads of asthmatic children and their parents with two years of follow-up for assessing the change in asthma control, sleep problems, and asthma-specific HRQOL. The Asthma Control and Communication Instrument was used to measure asthma control status. Nighttime sleep quality assessment was based on difficulty falling asleep and getting up, and sleep disturbance. The Iowa Pediatric Daytime Sleeping Scale was used to assess daytime sleepiness. The PROMIS Asthma Impact Scale was used to measure asthma-specific HRQOL. Multilevel structural equation modeling was performed to quantify the direct and indirect effects of asthma control status on asthma-specific HRQOL through nighttime sleep quality and daytime sleepiness. Results Poorer asthma control status was directly associated with lower asthma-specific HRQOL at within-subject and between-subject levels ( p 0.05); however, effects of asthma control on asthma-specific HRQOL were indirectly influenced through daytime sleepiness at the within-subject level ( p 0.05), and through nighttime sleep quality and daytime sleepiness at the between-subject level ( p 0.05). Conclusions Asthma control status is associated with asthma-specific HRQOL, and this association is mediated by nighttime sleep quality and daytime sleepiness. Clinicians should address sleep problems related to asthma control to improve HRQOL for asthmatic children.

Background Facial lipoatrophy is common in people on antiretroviral (ARV) regimens for HIV/AIDS and can impair health-related quality of life. Objectives We developed the Facial Appearance Inventory (FAI) to measure the impact of ARV-associated facial lipoatrophy. Methods Qualitative methods were used to identify key concerns of people with facial lipoatrophy. The major concerns were used to identify 24 items for the FAI. The FAI was administered to a cross-sectional sample of 96 people with HIV and facial lipoatrophy and compared to the established Assessment of Body Change Distress (ABCD) and MOS-HIV questionnaires. Results Mean age was 48.8 years, 87.5% were men, 69.8% were Caucasian, and 60% had some college education. Mean CD4 count was 435 cells/mm3. There were few missing data, and the summary score showed no floor or ceiling effects, with a mean (SD) of 25.6 (17.9). Cronbach's alpha for the scale was 0.98. FAI items satisfied criteria for convergent and discriminant construct validity. FAI items were more strongly correlated with mental health domains (R = 0.33) than with physical health domains (R = 0.26) on the MOS-HIV. Patients with greater severity of lipoatrophy had significantly worse scores than those with less severity (James 3-4, vs. James 0-2). There were no significant differences for FAI scores by age group, income group, CD4 cell count, or HIV viral load group. Those with less education and those with darker skin types reported less impairment ( P < .05). Conclusions The 24-item FAI shows evidence for reliability, validity, and usefulness as a measure of the impact of facial lipoatrophy.

ObjectivesContent elucidation for patient-reported outcomes (PROs) in paediatric cancer survivorship is understudied. We aimed to compare differences in the contents of five PRO domains that are important to paediatric cancer survivorship through semistructured interviews with paediatric cancer survivors and caregivers, and identified new concepts that were not covered in the item banks of the Patient-Reported Outcomes Measurement Information System (PROMIS).DesignSemistructured interviews to collect qualitative PRO data from survivors and caregivers.SettingA survivorship care clinic of a comprehensive cancer centre in the USA.ParticipantsThe study included 51 survivors (ResultsFor pain and meaning and purpose, ‘Hurt a lot’ and ‘Purpose in life’ were top concepts for survivors and caregivers, respectively. For fatigue and psychological stress, ‘Needed to sleep during the day’/‘Trouble doing schoolwork’ and ‘Felt worried’ were top concepts for survivors, and ‘Felt tired’ and ‘Felt distress’/‘Felt stressed’ for caregivers. Survivors reported more physically relevant contents (eg, ‘Hard to do sport/exercise’; 0.78 vs 0.23, p=0.007) for pain, fatigue and stress, whereas caregivers used more emotionally relevant concepts (eg, ‘Too tired to enjoy things I like to do’; 0.31 vs 0.05, p=0.025). Both groups reported positive thoughts for meaning and purpose (eg, ‘Have goals for myself’). One (psychological stress, meaning and purpose) to eleven (fatigue) new concepts were generated.ConclusionsImportant PRO contents in the form of meaningful concepts raised by survivors and caregivers were different and new concepts emerged. PRO measures are warranted to include survivorship-specific items by accounting for the child’s and the caregiver’s viewpoints.

PURPOSE: Having independent versions of the PROMIS® scales (for Pediatric and Adults) is problematic as scores can’t be evaluated longitudinally as individuals move from childhood into adulthood. The primary aim of this research project is to use item response theory (IRT) to develop a transitional scoring link (or “crosswalk”) between the PROMIS adult and pediatric physical health measures. SETTING: Sample 1 was collected at 6 rehabilitation hospitals in the U.S., and participants in Sample 2 were recruited from public health insurance programs and an online research panel. METHODS: PROMIS pediatric and adult physical function, mobility, upper extremity, fatigue, and pain measures were administered to a sample of 874 individuals aged 14–20 years old with special health needs and a sample of 641 individuals aged 14–25 years with a disability. IRT-based scores were linked using a linear approximation to calibrated projection. RESULTS: Estimated latent variable correlations ranged between .84 and .95 for the PROMIS pediatric and adult scores. Root expected mean square difference values were below the .08 threshold in all cases except when comparing genders on the Mobility (.097) and Pain (.10) scales in the special health care needs sample. Sum score conversion tables for the pediatric and adult PROMIS measures are presented. CONCLUSIONS: The linking coefficients can be used to calculate scale scores on PROMIS adult measures from pediatric measure scores and vice-versa. This may lead to more accurate measurement in cross-sectional studies spanning multiple age groups or longitudinal studies that require comparable measurement across distinct developmental stages.

Background Financial hardship among survivors of pediatric cancer has been understudied. We investigated determinants and consequences of financial hardship among adult survivors of childhood cancer. Methods Financial hardship, determinants, and consequences were examined in 2811 long-term survivors (mean age at evaluation = 31.8 years, years postdiagnosis = 23.6) through the baseline survey and clinical evaluation. Financial hardship was measured by material, psychological, and coping/behavioral domains. Outcomes included health and life insurance affordability, retirement planning, symptoms, and health-related quality of life (HRQOL). Odds ratios (ORs) estimated associations of determinants with financial hardship. Odds ratios and regression coefficients estimated associations of hardship with symptom prevalence and HRQOL, respectively. All statistical tests were two-sided. Results Among participants, 22.4% (95% confidence interval [CI] = 20.8% to 24.0%), 51.1% (95% CI = 49.2% to 52.9%), and 33.0% (95% CI = 31.1% to 34.6%) reported material, psychological, and coping/behavioral hardship, respectively. Risk factors across hardship domains included annual household income of $39 999 or less vs $80 000 or more (material OR = 3.04, 95% CI = 2.08 to 4.46, psychological OR = 3.64, 95% CI = 2.76 to 4.80, and coping/behavioral OR = 4.95, 95% CI = 3.57 to 6.86) and below high school attainment vs college graduate or above (material OR = 2.22, 95% CI = 1.45 to 3.42, psychological OR = 1.75, 95% CI = 1.18 to 2.62, and coping/behavioral OR = 2.05, 95% CI = 1.38 to 3.06). Myocardial infarction, peripheral neuropathy, subsequent neoplasm, seizure, stroke, reproductive disorders, amputation, and upper gastrointestinal disease were associated with higher material hardship (all P Conclusions A substantial proportion of adult survivors of childhood cancer experienced financial hardship. Vulnerable sociodemographic status and late effects were associated with hardship. Survivors with financial hardship had an increased risk of symptom prevalence and impaired HRQOL.

To the authors' knowledge, social network status in adolescent and young adult (AYA) cancer survivors has not been adequately studied to date. The authors developed and validated a functional social network index (FSNI) for AYA survivors, and compared its performance with that of 2 traditional indices (density and betweenness centrality).A total of 102 AYA survivors and 102 noncancer controls who were matched for age, sex, and race were recruited from an Internet panel. Each participant reported relationships with up to 25 close friends and/or relatives. The authors developed a FSNI with reported marital status, contact frequency with friends/relatives, available resources for emotional and tangible support, and available resources for physical activity and weight management advice. Linear regression was used to analyze associations between the FSNI and cancer diagnoses, treatments, and coping skills.Based on the FSNI, survivors were found to have more available resources for emotional support (beta [b] = 3.02; P = .003), tangible support (b = 4.17; P.001), physical activity advice (b = 3.94; P.001), and weight management advice (b = 4.10; P.001) compared with noncancer controls. Survivors of lymphoma had the largest FSNI, whereas survivors of central nervous system malignancies had the smallest (b = 2.77; P = .02). A higher FSNI was associated with better coping skills: less denial (b = 0.10; P = .01), using emotional support (b = 0.08; P = .04), using instrumental support (b = 0.12; P.001), less behavioral disengagement (b = 0.08; P = .04), venting of emotions (b = 0.10; P = .004), positive reframing (b = 0.12; P = .003), planning for the future (b = 0.08; P = .03), and religious engagement (b = 0.16; P.001). Density and betweenness centrality indices demonstrated neither significant differences in social networks between cancer survivors and controls (all P values.05) nor significant associations with coping skills (all P values.05).The FSNI appears to provide a better social network assessment for AYA cancer survivors than traditional indices. Cancer 2018;124:2220-7. © 2018 American Cancer Society.

Insomnia has become one of the foremost health concerns among workers. Despite a significant number of epidemiological studies have reported on the correlation between insomnia and job stress, comprehensive evidence remains insufficient. Therefore, this research seeks to provide evidence with greater reliability, through summarizing relevant contemporary literature via a meta-analysis. Literature from across Europe and Asia that was of both a prospective and cross-sectional design was included, if well-controlled odds ratios were available. The meta-analysis was undertaken in accordance with the guidelines devised by PRISMA, including tests for publication bias and heterogeneity. High job stress was associated with a greater risk of suffering from insomnia (random OR = 1.73, 95% CI 1.46–2.05), and the correlation between effort-reward imbalance and insomnia was statistically significant (random OR = 2.63, 95% CI 1.22–5.69). Higher demand was correlated to a relatively greater risk of insomnia (random OR = 1.35, 95% CI 1.20–1.51), while the pooled effect of low control was not found to be statistically significant. The summary random odds ratio of heavy workload was 2.76, and a pooled odds ratio of 1.67 (fixed, 95% CI 1.11–2.52) was calculated in low social support. With regard to the overall population, work-family conflict was correlated with insomnia (random OR = 2.32, 95% CI 1.53–3.51). The subgroup analysis provided comparable outcomes, for both males (fixed OR = 1.97, 95% CI 1.50–2.57) and females (random OR = 2.80, 95% CI 1.30–6.05). Egger’s regression indicated that publication bias may be apparent in the syntheses of effort-reward imbalance, low social support, and work-family conflict (p

Research studies that measure health-related quality of life (HRQOL) in both children and adults and longitudinal studies that follow children into adulthood need measures that can be compared across these age groups. This study links the PROMIS pediatric and adult emotional distress measures using data from participants with diverse health conditions and disabilities. Analyses were conducted and compared in two separate samples to confirm the stability of results. One sample (n = 874) included individuals aged 14–20 years with special health care needs and who require health services. The other sample (n = 641) included individuals aged 14–25 years who have a physical or cognitive disability. Participants completed both PROMIS pediatric and adult measures. Item response theory-based scores were linked using the linear approximation to calibrated projection. The estimated latent-variable correlation between pediatric and adult PROMIS measures ranged from 0.87 to 0.94. Regression coefficients β 0 (intercept) and β 1 (slope), and mean squared error are provided to transform scores from the pediatric to the adult measures, and vice versa. This study used a relatively new linking method, calibrated projection, to link PROMIS pediatric and adult measure scores, thus expanding the use of PROMIS measures to research that includes both populations.

Work-related stress factors are commonly considered to be increasing the risk of insomnia. But the association between circadian-rhythm gene period2 (per2) and insomnia remains unknown. The paper aimed to examine the relationships among the polymorphism in rs7602358 of Per2 gene, work stress, and insomnia. In the cross-sectional study of a total of 364 Chinese workers recruited, 218 had insomnia tested by the Athens Insomnia Scale (AIS-5). Work stress was assessed using the General Job Stress Questionnaire (GJSQ). Per2 genotypes were determined by SNaPshot technology. Unconditional logistic regression analysis was used to examine the interaction between polymorphism of Per2 and work stress in insomnia. The genotype AC or allele C of Per2 significantly increased the risk of insomnia (OR, 5.41; 95 % CI, 2.23–13.1) (OR, 3.29; 95 % CI, 1.55–6.98). Compared to low work stress, high work stress had a higher risk of insomnia (OR, 2.73; 95 % CI, 1.77–4.22). A significant interaction between Per2 and work stress in the risk of insomnia was found. Compared to workers with low work stress and genotype AA, those with high work stress and genotype AC had a higher risk of insomnia (OR, 15.12; 95 % CI, 3.46–66.09). The effect of genotype AC or allele C of Per2 on insomnia was relatively stronger than that of high work stress, suggesting that individual’s susceptibility should be taken into consideration when intervening and controlling insomnia of workers.

Vaccines are arguably the most important means of pandemic influenza mitigation. However, as during the 2009 H1N1 pandemic, mass immunization with an effective vaccine may not begin until a pandemic is well underway. In the U.S., state-level public health agencies are responsible for quickly and fairly allocating vaccines as they become available to populations prioritized to receive vaccines. Allocation decisions can be ethically and logistically complex, given several vaccine types in limited and uncertain supply and given competing priority groups with distinct risk profiles and vaccine acceptabilities. We introduce a model for optimizing statewide allocation of multiple vaccine types to multiple priority groups, maximizing equal access. We assume a large fraction of available vaccines are distributed to healthcare providers based on their requests, and then optimize county-level allocation of the remaining doses to achieve equity. We have applied the model to the state of Texas, and incorporated it in a Web-based decision-support tool for the Texas Department of State Health Services (DSHS). Based on vaccine quantities delivered to registered healthcare providers in response to their requests during the 2009 H1N1 pandemic, we find that a relatively small cache of discretionary doses (DSHS reserved 6.8% in 2009) suffices to achieve equity across all counties in Texas.

Children with non-Hodgkin lymphoma (NHL) undergo treatment with central nervous system-directed therapy, the potentially neurotoxic effects of which have not been reported in NHL survivors.NHL survivors (n = 187) participating in the St. Jude Lifetime Cohort who were 10 or more years from their diagnosis and were 18 years old or older underwent neurocognitive, emotional distress (Brief Symptom Inventory 18), and health-related quality of life (HRQOL) assessments (36-Item Short Form Health Survey). Age-adjusted z scores were compared with community controls (n = 181) and normative data. Treatment exposures were abstracted from medical records. Models adjusted for the age, sex, and time from diagnosis were used to calculate the risk of impairment.The mean ages at evaluation were similar for the survivors and the controls (35.7 ± 8.9 vs 35.5 ± 11.0 years; P = .86). Survivors were 25.2 ± 8.8 years from their diagnosis: 43 (23%) received cranial radiation, 70 (37%) received high-dose methotrexate, 40 (21%) received high-dose cytarabine, and 151 (81%) received intrathecal chemotherapy. Survivors' intelligence and attention were within normal limits; however, their memory, executive function, processing speed, and academics were impaired in comparison with both population norms and community controls (P values .05). Treatment-related exposures were not associated with neurocognitive function; however, neurocognitive impairment was associated with lower educational attainment, unemployment, and occupational status (P values .03). Slower processing speed and worse self-reported executive function were associated with symptoms of depression (P values ≤ .003) and poorer HRQOL (P values .05).Adult survivors of childhood NHL experience impaired neurocognitive function, which is associated with lower social attainment and poor HRQOL. Early-detection and intervention strategies are recommended. Cancer 2017. © 2017 American Cancer Society.

Background. Few studies have compared multiple health-related quality-of-life (HRQOL) instruments simultaneously for pediatric populations. This study aimed to test psychometric properties of 4 legacy pediatric HRQOL instruments: the Child Health and Illness Profile (CHIP), the KIDSCREEN-52, the KINDL, and the Pediatric Quality of Life Inventory (PedsQL). Methods. This study used data from 908 parents whose children (ages 2–19 years) were enrolled in Florida Medicaid. Parents were asked via telephone interview to complete each instrument appropriate to the age of their children. Structural, convergent/discriminant, and known-group validities were investigated. We examined structural validity using confirmatory factor analyses. We examined convergent/discriminant validity by comparing Spearman rank correlation coefficients of homogeneous (physical functioning and physical well-being) versus heterogeneous (physical and psychological functioning) domains of the instruments. We assessed known-groups validity by examining the extent to which HRQOL differed by the status of children with special health needs (CSHCN). Results. Domain scores of the 4 instruments were not normally distributed, and ceiling effects were significant in most domains. The KIDSCREEN-52 demonstrates the best structural validity, followed by the CHIP, KINDL, and PedsQL. The PedsQL and the KIDSCREEN-52 show better convergent/discriminant validity than the other instruments. Known-groups validity in discriminating CSHCN versus no needs was the best for the PedsQL, followed by the KIDSCREEN-52, the CHIP, and the KINDL. Conclusion. No one instrument was fully satisfactory in all psychometric properties. Strategies are recommended for future comparison of item content and measurement properties across different HRQOL instruments for research and clinical use.

Galectin-3, a chimeric type β-galactoside-binding protein, is known to modulate viral infection; however, its role in enterovirus 71 (EV71) infection has not been investigated. We generated galectin-3 null rhabdomyosarcoma (RD) cells and evaluated whether EV71 infection would be affected. In galectin-3 null cells, the released and intracellular EV71 viral loads were suppressed after 24 h of infection, and cell death rates were significantly lower, while cell proliferation remained unaltered. In addition, RD cells expressing a nonsynonymous genetic variant of galectin-3, rs4644 (LGALS3 +191C/A, P64H), produced lower virus titers than those with wild-type galectin-3 (C allele). To clarify whether the in vitro viral load reduction correlates with clinical severity, we enrolled children with laboratory-confirmed EV71 infection. Since hyperglycemia is an indicator of severe EV71 infection in children, 152 of 401 enrolled children had glucose examinations at admission, and 59 subjects had serum glucose levels ≥ 150 mg/dL. In comparison to the rs4644 AA genotype (2.2 ± 0.06 log10 mg/dL), serum glucose levels during EV71 infection were higher in patients with CC (2.4 ± 0.17 log10 mg/dL, p = 0.03) and CA (2.4 ± 0.15 log10 mg/dL, p = 0.02) genotypes, respectively. These findings suggest that the rs4644 AA genotype of galectin-3 might exert a protective effect. In summary, galectin-3 affects EV71 replication in our cellular model and its variant, rs4644, is associated with hyperglycemia in the clinical setting. The underlying mechanism and its potential therapeutic application warrant further investigation.

The purpose of this study was to examine the influence of explanatory and confounding variables on health-related quality of life after accounting for response shift, measurement bias and response shift in measurement using structural equation modeling. Hypertensive patients with coronary artery disease randomized to anti-hypertensive treatment, completed the ShortForm-36 questionnaire at both baseline and 1 year (n = 788). Three measurement biases were found and all three were considered as response shift in measurement. Older patients reported worse scores for both physical functioning (PF) and role-physical at baseline and 1 year later compared to younger patients; and males reported better PF than females after conditioning on the latent trait of general physical health. Before controlling for response shift, patients' PF scores were not statistically different over time; however, PF scores significantly improved (p0.01) after controlling for recalibration response shift. Assessment of how patients perceive their change in health-related quality of life over time is warranted.

The objectives of the present study are to investigate the precision of static (fixed-length) short forms versus computerized adaptive testing (CAT) administration, response pattern scoring versus summed score conversion, and test-retest reliability (stability) of the Patient-Reported Outcomes Measurement Information System (PROMIS(®)) pediatric self-report scales measuring the latent constructs of depressive symptoms, anxiety, anger, pain interference, peer relationships, fatigue, mobility, upper extremity functioning, and asthma impact with polytomous items.Participants (N = 331) between the ages of 8 and 17 were recruited from outpatient general pediatrics and subspecialty clinics. Of the 331 participants, 137 were diagnosed with asthma. Three scores based on item response theory (IRT) were computed for each respondent: CAT response pattern expected a posteriori estimates, short-form response pattern expected a posteriori estimates, and short-form summed score expected a posteriori estimates. Scores were also compared between participants with and without asthma. To examine test-retest reliability, 54 children were selected for retesting approximately 2 weeks after the first assessment.A short CAT (maximum 12 items with a standard error of 0.4) was found, on average, to be less precise than the static short forms. The CAT appears to have limited usefulness over and above what can be accomplished with the existing static short forms (8-10 items). Stability of the scale scores over a 2-week period was generally supported.The study provides further information on the psychometric properties of the PROMIS pediatric scales and extends the previous IRT analyses to include precision estimates of dynamic versus static administration, test-retest reliability, and validity of administration across groups. Both the positive and negative aspects of using CAT versus short forms are highlighted.

Objective To examine the relationships among pediatric fatigue, health-related quality of life (HRQOL), and family impact among children with special health care needs (CSHCNs), specifically whether HRQOL mediates the influence of fatigue on family impact. Methods 266 caregivers of CSHCNs were studied. The Pediatric Quality of Life Inventory Multidimensional Fatigue Scale, Pediatric Quality of Life Inventory Generic Scale, and Impact on Family Scale were used to measure fatigue, HRQOL, and family impact, respectively. Linear regressions were used to analyze the designated relationships; path analyses were performed to quantify the mediating effects of HRQOL on fatigue–family impact relationship. Results Although greater fatigue was associated with family impact (p < .05), the association was not significant after accounting for HRQOL. Path analyses indicated the direct effect of fatigue on family impact was not significant (p > .05), whereas physical and emotional functioning significantly mediated the fatigue–family impact relationship (p < .001). Conclusion Fatigue is related to family impact among CSHCNs, acting through the impairment in HRQOL.

Background Health-related quality of life (HRQOL) is increasingly measured as an outcome for clinical and health services research. However, relatively little is known about how non-health factors affect HRQOL. Personality is a potentially important factor, yet evidence regarding the effects of personality on HRQOL measures is unclear. Methods This systematic review examined the relationships among aspects of personality and HRQOL. Eligible studies were identified from Medline and PsycINFO. The review included 76 English-language studies with HRQOL as a primary outcome and that assessed personality from the psychological perspective. Individuals with various health states, including ill (e.g., cancer, cardiovascular disorders), aging, and healthy, were included in this review study. Results Some personality characteristics were consistently related to psychosocial aspects more often than physical aspects of HRQOL. Personality characteristics, especially neuroticism, mastery, optimism, and sense of coherence were most likely to be associated with psychosocial HRQOL. Personality explained varying proportions of variance in different domains of HRQOL. The range of variance explained in psychosocial HRQOL was 0 to 45% and the range of explained variance in physical HRQOL was 0 to 39%. Conclusions Personality characteristics are related to HRQOL. Systematic collection and analysis of personality data alongside HRQOL measures may be helpful in medical research, clinical practice, and health policy evaluation.

To examine known-groups validity of the Patient-Reported Outcomes Measurement Information System (PROMIS®) Short Forms (SFs) for adolescents and young adults with special healthcare needs (SHCN) using data collected from the PROMIS Linking Study. In total, 292 adolescents aged 14–17.9 years and 300 young adults aged 18–20 years with SHCN from the PROMIS Linking Study were used for analyses. Presence of SHCN was classified into three categories (medication use, service use, and functional limitations). HRQoL was measured with the PROMIS Pediatric and Adult SFs. Differences in health-related quality of life (HRQoL) domain scores between SHCN sample and the norms of the PROMIS pediatric and adult calibration samples, respectively, were compared using t tests. Associations of HRQoL scores with the presence of individual SHCN categories were tested using linear regression. All HRQoL domain scores for the SHCN samples were significantly worse than the respective calibration samples. Adolescents and young adults with SHCN-related service use and functional limitations reported worse HRQoL than those without service use and functional limitations (p’s

We describe the racial and ethnic variation in family impact resulting from caring for a child with a life-threatening illness. Parents of children aged 2-21 years diagnosed with a potentially life-threatening illness and enrolled in Florida's Medicaid and Children's Medical Services Network programs were surveyed. Two hundred sixty-six telephone surveys were conducted in English and Spanish between November 2007 and April 2008. In adjusted models, compared with Whites, Latinos reported that their child's illness resulted in a greater negative impact on the family. Continued study of this group of parents is critical to developing culturally appropriate interventions to reduce strain and burden and improve the quality of life for families.

Young adult survivors of childhood cancer (YASCC) are an ever-growing cohort of survivors due to increasing advances in technology. Today, there is a shift of focus to not just ensuring survivorship but also the quality of survivorship, which can be assessed with standardized instruments. The majority of standardized health related quality of life (HRQoL) instruments, however, are non-specific to this age group and the unique late effects within YASCC populations. The purpose of this study was to investigate the relevance and accuracy of standardized HRQoL instruments used with YASCC.In a previous study, HRQoL items from several instruments (SF-36, QLACS, QLS-CS) were examined for relevance with a population of YASCC. Participants (n = 30) from this study were recruited for a follow-up qualitative interview to expand on their perceptions of missing content from existing instruments.Respondents reported missing, relevant content among all three of the HRQoL instruments. Results identified three content areas of missing information: (1) Perceived sense of self, (2) Relationships, and (3) Parenthood.Existing HRQoL instruments do not take into account the progression and interdependence of emotional development impacted by a cancer diagnosis. The themes derived from our qualitative interviews may serve as a foundation for the generation of new items in future HRQoL instruments for YASCC populations. Further testing is required to examine the prevalence, frequency, and breadth of these items in a larger sample.

Few studies examine the relevance of health-related quality of life (HRQOL) instruments for young adult survivors of childhood cancer (YASCC). This study compared the psychometric properties of two survivor-specific instruments, the Quality of Life-Cancer Survivor (QOL-CS) and Quality of Life in Adult Cancer Survivor (QLACS).Data from 151 YASCC who enrolled in cancer/tumor registries of two medical centers were used. We examined construct validity by conducting confirmatory factor analysis using indices of chi-square statistic, comparative fit index, and root mean square error of approximation. We examined convergent/discriminant validity by comparing Pearson's correlation coefficients of homogeneous (e.g., physical functioning and pain) of both instruments versus heterogeneous domains (e.g., physical and psychological functioning). We assessed known-groups validity by examining the extent to which HRQOL differed by late effects and comorbid conditions and calculated relative validity (RV) defined as contrasting F-statistics of individual domains to the domain with the lowest F-statistic. Superior known-groups validity is observed if a domain of one instrument demonstrates a higher RV than other domains of the instruments.YASCC data cannot replicate the constructs both instruments intend to measure, suggesting poor construct validity. Correlations of between-homogeneous and between-heterogeneous domains of both instruments were not discernible, suggesting poor convergent/discriminant validity. Both instruments were equally able to differentiate HRQOL between YASCC with and without late effects and comorbid conditions, suggesting similar known-groups validity.Neither instrument is superior. Item response theory is suggested to select high-quality items from different instruments to improve HRQOL measure for YASCC.

We investigated misclassification rates, sensitivity, and specificity of self-reported cigarette smoking through serum cotinine concentration (liquid chromatography tandem mass spectrometry) among 287 adult survivors of childhood cancer. Overall, 2.5-6.7% and 19.7-36.9% of the self-reported never and past smokers had cotinine levels indicative of active smoking. Sensitivity and specificity of self-reported smoking were 57.5-67.1% and 96.6-99.2%. Misclassification was associated with younger age (OR = 3.2; 95% CI = 1.4-7.4), male (OR = 2.1; 95% CI = 1.1-4.0), and past (OR = 2.7; 95% CI = 1.3-5.8) or current (OR = 2.6; 95% CI = 1.0-6.6) marijuana use. After adjusting for tobacco-related variables, current marijuana use remained a significant risk for misclassification. Clinicians/researchers should consider bio-verification to measure smoking status among survivors.

The authors evaluated the efficacy of a brief image-based prevention intervention and assessed current drug use as a moderator of intervention effects. In a clinical trial, 416 high school-age adolescents were randomized to either the brief intervention or usual care control, with data collected at baseline and 3-month follow-up. The brief intervention consisted of a tailored in-person communication and a series of parent/guardian print materials based on the behavior-image model. Health behavior goal setting increased for participants receiving the brief intervention, with an effect size in the small range (d = 0.33). Overall effect sizes for cigarette smoking frequency and quantity and alcohol use frequency and quantity were small (ds = 0.16-0.21) and in favor of the brief intervention. However, adolescents reporting current substance use who received the brief intervention reduced their frequency and heavy use of alcohol, frequency and quantity of cigarette smoking, and reported fewer alcohol/drug problems, with larger effects ranging from small to approaching medium in size (ds = 0.32-0.43, ps < .01). This study suggests that brief image-based messages may increase health behavior goal setting and reduce substance use, particularly among drug-using older adolescents.

This study examined whether 3-month outcomes of a brief image-based multiple behavior intervention on health habits and health-related quality of life of college students were sustained at 12-month follow-up without further intervention.A randomized control trial was conducted with 303 undergraduates attending a public university in southeastern US. Participants were randomized to receive either a brief intervention or usual care control, with baseline, 3-month, and 12-month data collected during fall of 2007.A significant omnibus MANOVA interaction effect was found for health-related quality of life, p=0.01, with univariate interaction effects showing fewer days of poor spiritual health, social health, and restricted recent activity, p's0.05, for those receiving the brief intervention. Significant group by time interaction effects were found for driving after drinking, p=0.04, and moderate exercise, p=0.04, in favor of the brief intervention. Effect sizes typically increased over time and were small except for moderate size effects for social health-related quality of life.This study found that 3-month outcomes from a brief image-based multiple behavior intervention for college students were partially sustained at 12-month follow-up.

Annually, about 500,000 children are coping with life-limiting illnesses in the USA. Integrated pediatric palliative care program could benefit some of these children by improving their health-related quality of life (HRQOL). To measure the effect of pediatric palliative care programs on HRQOL, a valid and reliable tool must be identified. This study aimed to validate the psychometric properties of a generic HRQOL instrument, the Pediatric Quality of Life 4.0, for children with life-limiting illnesses. Analyses were conducted using telephone survey data collected from 266 parents whose Medicaid-enrolled children had life-limiting illnesses. Results of the analyses suggest the Pediatric Quality of Life 4.0 does not have valid psychometric properties for measuring HRQOL within this population. Our study documents several challenges in using the generic instrument to measure HRQOL in pediatric palliative care setting. We point out future directions to refine or develop HRQOL instruments for this population of vulnerable children.

Limited evidence examines agreement between the ratings of adolescents' health-related quality of life (HRQOL) by parents and adolescents especially accounting for measurement properties. This study aimed to test whether agreement exists between the dyads using a methodology of measurement invariance.We conducted a telephone survey to collect data from parents and their adolescents enrolled in Florida's Children's Medical Services (376 pairs) using the PedsQL 4.0. We used multi-group confirmatory factor analysis to test measurement invariance, including configural (equivalent HRQOL construct), metric (equivalent item-domain associations), scalar (equivalent starting value of ratings), and residual (equivalent nonsystematic measurement errors of ratings) invariance. We also investigated correlates of discrepancies in the dyadic ratings.There were equivalent HRQOL constructs and item-domain associations between the dyads. However, some items show different starting values and nonsystematic errors in the dyadic ratings. After adjusting for noninvariant items, adolescents reported significant higher HRQOL scores than parents in all domains (P0.05). Parents' rating of adolescents' health significantly contributed to discrepancies in the dyadic ratings (P0.05).Adolescents rated HRQOL higher than their parents. This discrepancy was associated with severe health conditions. Without assuring measurement invariance, comparisons of the dyadic HRQOL ratings can be misleading.

ObjectiveThere is a debate regarding the use of disease-specific versus generic instruments for health-related quality of life (HRQOL) measures. We tested the psychometric properties of HRQOL measures using the Diabetes-39 (D-39) and the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36).MethodsThis was a cross-sectional study collecting data from 280 patients in Taiwan. Exploratory factor analysis was conducted to evaluate construct validity of the two instruments. Known-groups validity was examined using laboratory indicators (fasting, 2-hour postprandial plasma glucose, and hemoglobin A1c), presence of diabetic complications (retinopathy, nephropathy, neuropathy, diabetic foot disorder, cardiovascular and cerebrovascular disorders), and psychosocial variables (sense of well-being and self-reported diabetes severity). Overall discriminative power of the two instruments was evaluated using the C-statistic.ResultsThree distinct factors were extracted through factor analysis. These factors tapped all subscales of the D-39, fourphysical subscales of the SF-36, and four mental subscales of the SF-36, respectively. Compared with the SF-36, the D-39 demonstrated superior known-groups validity for 2-hour postprandial plasma glucose groups but was inferior for complication groups. Compared with the SF-36, the D-39 discriminated better between self-reported severity known groups, but was inferior between well-being groups. In overall discriminative power, the D-39 discriminated better between laboratory known groups. The SF-36, however, was superior in discriminating between complication known groups.ConclusionsFor psychometric properties, the D-39 and the SF-36 were superior to each other in different regards. The combined use of a disease-specific instrument and a generic instrument may be a useful strategy for diabetes HRQOL assessment.

Missing health-related quality of life (HRQOL) data in clinical trials can impact conclusions but the effect has not been thoroughly studied in HIV clinical trials. Despite repeated recommendations to avoid complete case (CC) analysis and last observation carried forward (LOCF), these approaches are commonly used to handle missing data. The goal of this investigation is to describe the use of different analytic methods under assumptions of missing completely at random (MCAR), missing at random (MAR), and missing not at random (MNAR) using HIV as an empirical example. Medical Outcomes Study HIV (MOS-HIV) Health Survey data were combined from two large open-label multinational HIV clinical trials comparing treatments A and B over 48 weeks. Inclusion in the HRQOL analysis required completion of the MOS-HIV at baseline and at least one follow-up visit (weeks 8, 16, 24, 40, 48). Primary outcomes for the analysis were change from week 0 to 48 in mental health summary (MHS), physical health summary (PHS), pain and health distress scores analyzed using CC, LOCF, generalized estimating equations (GEE), direct likelihood and sensitivity analyses using joint mixed-effects model, and Markov chain Monte Carlo (MCMC) multiple imputation. Time and treatment were included in all models. Baseline and longitudinal variables (adverse event and reason for discontinuation) were only used in the imputation model. A total of 511 patients randomized to treatment A and 473 to treatment B completed the MOS-HIV at baseline and at least one follow-up visit. At week 48, 71% of patients on treatment A and 31% on treatment B completed the MOS-HIV survey. Examining changes within each treatment group, CC and MCMC generally produced the largest or most positive changes. The joint model was most conservative; direct likelihood and GEE produced intermediate results; LOCF showed no consistent trend. There was greater spread for within-group changes than between-group differences (within MHS scores for treatment A: −0.1 to 1.6, treatment B: 0.4 to 2.0; between groups: −0.7 to 0.4; within PHS scores for treatment A: −1.5 to 0.4, treatment B: −1.7 to −0.2; between groups: 0.1 to 1.1). The size of within-group changes and between-group differences was of similar magnitude for the pain and health distress scores. In all cases, the range of estimates was small

Background Evidence is sparse about whether body weight categories in adolescents are associated with differences in pediatric HRQoL rated by adolescents and parents. Additionally, it is unknown whether HRQoL rated by individuals with different body mass index (BMI) weight categories is psychometrically comparable. This study aimed to assess whether difference in pediatric HRQoL rated by adolescents and their parents was explained by BMI weight status, and to test measurement properties of HRQoL items related to weight categories using differential item functioning (DIF) methodology. DIF refers to the situation when the individuals across subgroups rate an item differently (e.g., item score three by one subgroup and four by another) given the same underlying construct. Methods A cross-sectional study utilizing a sample of parents (n = 323) and their adolescents aged 15–18 years old (n = 323) who enrolled in Florida’s Medicaid. Adolescent self-reports and parent proxy-reports of the Pediatric Quality of Life Inventory was adopted to measure pediatric HRQoL. We classified body weight categories as normal weight, overweight, and obesity. A Multiple Indicator Multiple Cause (MIMIC) method was used to assess DIF associated with BMI weight status, especially testing the disparity in the parameters of different weight categories (reference: lower weight category) associated with a response to a HRQoL item conditioning on the same underlying HRQoL. DIF analyses were conducted by adolescent self-reports and parent proxy-reports. Results Parents reported lower pediatric HRQoL across all domains than adolescents did. Excess body weight (combined overweight and obese) was significantly associated with a greater discrepancy in the rating of emotional and total functioning between adolescents and parents (p

To compare the responsiveness to change of the Patient-Reported Outcomes Measurement Information System (PROMIS(®)) asthma impact, pain interference, fatigue, depressive symptoms, mobility, and peer relationship scales to a legacy scale, the Paediatric Asthma Quality of Life Questionnaire (PAQLQ).Two hundred and twenty-nine child-parent dyads from public insurance programs were enrolled. PROMIS pediatric short forms (SFs) and the PAQLQ were used to measure health-related quality of life across four time points (T1-T4) over 2 years. The Asthma Control and Communication Instrument was used to measure the change in asthma control, and the Global Rating of Change (GRC) Index for breathing problems and overall health was used to measure the change in health status. Responsiveness was tested by comparing the changes in health-related quality of life with the changes in asthma control and health status over time using t tests, generalized estimating equations, and relative validity approaches. Magnitudes of the responsiveness between the Pediatric PROMIS and PAQLQ were assessed through statistical significance, Cohen's d effect size (ES), and standardized response mean (SRM).The PROMIS asthma impact scale and all PAQLQ scales exhibited significant responsiveness (p's0.05) and small to medium ES/SRM when anchored to asthma control, GRC breathing problems, and overall health. Relative validity, especially related to change in asthma control status and GRC breathing problems, was equivalent. PROMIS pain interference, fatigue, and mobility SFs also indicated adequate responsiveness.The PROMIS asthma impact SF indicated similar responsiveness to the PAQLQ scales. Due to its brevity and responsiveness, the PROMIS asthma impact SF is useful for clinical practice or research.

Limited evidence is available to explain the role of four components of health-related quality of life (HRQoL) on breast and cervical cancer screening. The objective of this study was to determine the relationship between four HRQoL aspects and use of mammography and Pap test screening in US women. Data were obtained from the 2012 Behavioral Risk Factor Surveillance System (BRFSS). The outcome variables were receiving mammogram