Youth Victims of Violence Report Worse Quality of Life Than Youth With Chronic Diseases.

OBJECTIVES: Measuring health-related quality of life (HRQOL) provides the patient's perspective of his/her well-being and offers a unique outcome measure to demonstrate the impact of violence on the victim. To date, no study has described HRQOL in youth victims of violence in the United States. The purpose of this study was to describe HRQOL in youth victims of violence as compared with healthy youth and youth with chronic disease. METHODS: We conducted an exploratory cross-sectional study of the HRQOL of victims of violence aged 8 to 18 years. Descriptive statistics were reported for participant and injury demographics. One sample t tests were used to compare the sample population's HRQOL to known HRQOL of healthy populations and specific disease populations. RESULTS: Fifty-eight victims of violence participated in the study. Youth victims of violence had significantly worse mean HRQOL scores (mean, 71.4) compared with healthy youth in overall functioning (mean, 83.9), P < 0.001. Youth victims of violence reported worse psychosocial (mean, 67.6), emotional (mean, 62.9), and school (mean, 63.8) functioning than youth with obesity (mean, 72.1, 68.6, 75.0, respectively) and cancer (mean, 72.1, 72.2, 68.3, respectively). Mean Patient-Reported Outcomes Measurement Information System T scores for youth victims of violence were significantly worse in anxiety (T = 51.9) and depression (T = 52.4) compared with youth with obesity (T = 48.3, 49.2), cancer (T = 47.7, 47.6), and sickle cell disease (T = 43, 44). CONCLUSIONS: Youth victims of violence suffer significant impairment in HRQOL compared with healthy populations and youth with specific disease burdens. Future studies into violence prevention effectiveness should use HRQOL as a comparative outcome measure to better tailor post injury management and interventions.

Reliability, Validity, and Feasibility of Direct Elicitation of Children's Preferences for Health States.

BACKGROUND: Children's preferences for health states represent an important perspective when comparing the value of alternative health care interventions related to pediatric medicine, and are fundamental to comparative effectiveness research. However, there is debate over whether these preference data can be collected and used. PURPOSE: The purpose of this study was to establish psychometric properties of eliciting preferences for health states from children using direct methods. DATA SOURCES: Ovid Medline, PsycINFO, Scopus, EconLit. STUDY SELECTION: English studies, published after 1990, were identified using Medical Subject Headings or keywords. Results were reviewed to confirm that the study was based on: 1) a sample of children, and 2) preferences for health states. DATA EXTRACTION: Standardized data collection forms were used to record the preference elicitation method used, and any reported evidence regarding the validity, reliability, or feasibility of the method. DATA SYNTHESIS: Twenty-six studies were ultimately included in the analysis. The standard gamble and time tradeoff were the most commonly reported direct preference elicitation methods. Seven studies reported validity, four reported reliability, and nine reported feasibility. Of the validity reports, construct validity was assessed most often. Reliability reports typically involved interclass correlation coefficient. For feasibility, four studies reported completion rates. LIMITATIONS: The search was limited to four databases and restricted to English studies published after 1990. Only evidence available in published studies were considered; measurement properties may have been tested in pilot or pre-studies but were not published, and are not included in this review. CONCLUSION: The few studies found through this systematic review demonstrate that there is little empirical evidence on which to judge the use of direct preference elicitation methods with children regarding health states.

Health-related Quality of Life in Infants With Sickle Cell Disease.

Using historical cohorts of healthy, acutely ill, and chronically ill infants for comparison, we sought to determine whether infants with sickle cell disease (SCD) have impaired health-related quality of life (HRQL). We conducted a cross-sectional study at 2 sites: the Medical College of Wisconsin/Children's of Wisconsin and the University of Alabama School of Medicine/Children's of Alabama. Parents of 90 infants with SCD completed the PedsQL Infant Module corresponding to their infant's age (1 to 12 mo or 13 to 24 mo) during a regular clinic visit. At 1 to 12 months, infants with SCD displayed lower Physical HRQL than healthy infants, but better HRQL than chronically ill infants. By 13 to 24 months, infants with SCD had worse HRQL in all areas than healthy infants and worse Physical and Total HRQL than acutely ill infants. Compared with chronically ill infants in this age group, infants with SCD had similar Physical HRQL and better Psychosocial and Total HRQL. By 13 to 24 months, a greater proportion of infants with SCD had impaired Physical and Total HRQL compared with infants aged 1 to 12 months. All differences were significant at the (P<0.05) level. Impaired HRQL can be detected in infants with SCD.

Health-related quality of life in children with sickle cell anemia: impact of blood transfusion therapy.

The completion of the Multicenter Silent Infarct Transfusion Trial demonstrated that children with pre-existing silent cerebral infarct and sickle cell anemia (SCA) who received regular blood transfusion therapy had a 58% relative risk reduction of infarct recurrence when compared to observation. However, the total benefit of blood transfusion therapy, as assessed by the parents, was not measured against the burden of monthly blood transfusion therapy. In this planned ancillary study, we tested the hypothesis that a patient centered outcome, health-related quality of life (HRQL), would be greater in participants randomly assigned to the blood transfusion therapy group than the observation group. A total of 89% (175 of 196) of the randomly allocated participants had evaluable entry and exit HRQL evaluations. The increase in Change in Health, measured as the child's health being better, was significantly greater for the transfusion group than the observation group (difference estimate = -0.54, P ≤ 0.001). This study provides the first evidence that children with SCA who received regular blood transfusion therapy felt better and had better overall HRQL than those who did not receive transfusion therapy.

Clinically meaningful interpretation of pediatric health-related quality of life in sickle cell disease.

Health-related quality of life (HRQL) measures provide information about disease assessment; however, health care providers may be reluctant to use HRQL assessments as scores can be difficult to interpret. We sought to identify levels for impaired pain-related HRQL in children with sickle cell disease (SCD). Children (n=251) completed the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales and PedsQL SCD Module in a multisite study. Using children's item scores on the Pain and Hurt and Pain Impact scales of the PedsQL SCD Module, High, Intermediate, and Low Functioning groups were created. We compared functioning groups with the Pain and Hurt and Pain Impact scale scores to determine levels representing high and low HRQL. These scores were compared with disease severity and the PedsQL Generic Core Scales. Scores of ≤60 on the PedsQL SCD Pain and Hurt and Pain Impact scales were associated with severe disease and met requirements for impaired functioning on the PedsQL Generic Core Scales. Scores of ≥81 on the Pain and Hurt and the Pain Impact scales can be considered consistent with good HRQL in those domains in SCD. Alternately, scores of ≤60 are cause for concern and suggest areas of HRQL impairment in SCD.

Ambulatory quality indicators to prevent infection in sickle cell disease.

The purpose of this study was to identify rates of adherence for three outpatient quality indicators noted by Wang et al. (Pediatrics 2011;128:484­493): (1) influenza vaccine, (2) pneumococcal immunizations, and (3)penicillin prophylaxis in patients with sickle cell disease (SCD) in a Medicaid sample. These variables were chosen based on Wang and colleagues' suggestion that these variables are important for the assessment of the quality of care of children with SCD. We hypothesized that the overall rate of adherence would be poor with adults having worse rates of adherence than children. We conducted a retrospective cohort study using the Wisconsin State Medicaid database over a 5-year period to assess the preventative medication adherence of individuals with SCD. Preventative medication variables in this study included influenza vaccination,pneumococcal immunizations (PCV7, PPV23), and penicillin prophylaxis. As predicted, the 2003­2007 Wisconsin State Medicaid database showed patients with SCD had low adherence in terms of recommended influenza vaccinations (21.58% adherent), PPV23 pneumococcal immunizations (43.47% adherent), and penicillin prophylaxis (18.18% adherent). Pneumococcal immunizations for PCV7 were higher than expected (77.27%adherent). Although children tended to adhere to recommended preventative medications more than adults,overall adherence was low. Although we cannot explain why adherence is low, it is likely due to multiple factors at the patient- and provider-level. We encourage patients and providers to create a partnership to meet adherence recommendations, and we describe our strategies for increasing adherence.

Pathways to earned-security: the role of alternative support figures.

This study explored the kinds of relationship experiences associated with earned-security, i.e., the extent to which mothers who report early negative relationship histories with their parents are later able to form a secure working model of attachment (indicated by the ability to speak clearly and coherently about these histories). Mothers from a low-risk sample (N = 121) expecting their first child completed the Adult Attachment Interview (AAI), which was used to assess earned-security retrospectively using the stringent definition recommended by Main and Hesse (Hesse, 2008 ; Main, Goldwyn, & Hesse, 2002 ), as well as to identify alternative support figures. Participants also completed self-report measures of depressive symptomatology, questionnaires concerning their experiences in therapy, and later, when their babies were 12 to 15 months old, the Strange Situation procedure. Sixteen mothers were classified as earned-secure (25% of those classified as secure-autonomous and 13% of the whole sample). Women who were earned-secure (vs. insecure and continuous-secure) reported significantly higher levels of emotional support, but not instrumental support, from alternative support figures. They also spent more time in therapy than did insecure and continuous-secure women and were more likely to form secure attachments with their infants than insecure women. These findings were obtained even after controlling for depressive symptoms.