Our initial validation study suggests the TRAQ is a useful tool to assess transition readiness in YSHCN and to guide educational interventions by providers to support transition.
OBJECTIVE. Emerging evidence about optimal youth development highlights the importance of both reducing negative behavior and promoting positive behavior. In our study we tested a contextual model derived from positive youth-development theory by examining the association of family, school, and community risk and promotive factors, with several outcome indices of both positive and negative adolescent development.
METHODS.A sample of 42 305 adolescents aged 11 to 17 (51% girls) was drawn from the 2003 National Survey of Children's Health. Survey item composites were formed representing promotive and risk factors in the family (eg, closeness, aggression) and school and community (eg, community connectedness, school violence). Outcome composites reflected positive (social competence, health-promoting behavior, self-esteem) and negative (externalizing, internalizing, academic problems) developmental outcomes. Ordinary least squares regression was used to test the overall model. RESULTS. Between 0.10 and 0.50 of the variance in each outcome was explained by the contextual model. Multiple positive family characteristics were related to adolescent social competence and self-esteem, as well as lowered levels of internalizing and externalizing behavior and academic problems. Family communication, rules about television, and parents' own healthy behavior were related to adolescent health-promoting behavior. School and community safety were associated with increased social competence and decreased externalizing behavior. School violence was related to adolescent internalizing and externalizing behavior, as well as academic problems and lower self-esteem.CONCLUSIONS. Our results support the proposition that healthy adolescent development has roots in multiple contexts. Youth who were involved in contexts that provided positive resources from important others (ie, parents, schools, and comwww.pediatrics.org/cgi
Objective
To assess minimally important differences (MID) for several pediatric self-report item banks from the National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System® (PROMIS®).
Methods
We presented vignettes comprising sets of two completed PROMIS questionnaires and asked judges to declare whether the individual completing those questionnaires had an important change or not. We enrolled judges (including adolescents, parents, and clinicians) who responded to 24 vignettes (six for each domain of depression, pain interference, fatigue, and mobility). We used item response theory (IRT) to model responses to the vignettes across different judges and estimated MID as the point at which 50% of the judges would declare an important change.
Results
We enrolled 246 judges (78 adolescents, 85 parents, and 83 clinicians). The MID estimated with clinician data was about 2 points on the PROMIS T-score scale, and the MID estimated with adolescent and parent data was about 3 points on that same scale.
Conclusions
The MIDs enhance the value of PROMIS Pediatric measures in clinical research studies to identify meaningful changes in health status over time.
Characterization of toxicity associated with cancer and its treatment is essential to quantify risk, inform optimization of therapeutic approaches for newly diagnosed patients, and guide health surveillance recommendations for long-term survivors. The National Cancer Institute’s Common Terminology Criteria for Adverse Events (CTCAE) provides a common rubric for grading severity of adverse outcomes in cancer patients that is widely used in clinical trials. The CTCAE has also been used to assess late cancer treatment-related morbidity, but is not fully representative of the spectrum of events experienced by pediatric and aging adult survivors of childhood cancer. Also, CTCAE characterization does not routinely integrate detailed patient-reported and medical outcomes data available from clinically assessed cohorts. To address these deficiencies, we standardized the severity grading of long-term and late-onset health events applicable to childhood cancer survivors across their lifespan by modifying the existing CTCAEv4.03 criteria and aligning grading rubrics from other sources for chronic conditions not included or optimally addressed in the CTCAEv4.03. This manuscript describes the methods of late toxicity assessment used in the St. Jude Lifetime Cohort (SJLIFE) Study, a clinically assessed cohort in which data from multiple diagnostic modalities and patient-reported outcomes are ascertained.
Objectives
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.
Methods
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 two weeks after the first assessment.
Results
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 existing static short forms (8–10 items). Stability of the scale scores over a two week period was generally supported.
Conclusions
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 vs. short forms are highlighted.
Purpose
To conduct a comparative analysis of eight pediatric self-report scales for ages 8-17 years from the National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS®) in six pediatric chronic health conditions, using indicators of disease severity.
Methods
Pediatric patients (N = 1,454) with asthma, cancer, chronic kidney disease, obesity, rheumatic disease, and sickle cell disease completed items from the PROMIS pediatric mobility, upper extremity functioning, depressive symptoms, anxiety, anger, peer relationships, pain interference, and fatigue self-report scales. Comparisons within the six pediatric chronic health conditions were conducted by examining differences in groups based on disease severity using markers of severity that were specific to characteristics of each disease. A comparison was also made across diseases between children who had been recently hospitalized and those who had not.
Results
In general, there were differences in self-reported health outcomes within each chronic health condition, with patients who had higher disease severity showing worse outcomes. Across health conditions, when children with recent hospitalizations were compared with those who had not been hospitalized in the past six months, we found significant differences in the expected directions for all PROMIS domains, except anger.
Conclusions
PROMIS measures discriminate between different clinically meaningful subgroups within several chronic illnesses. Further research is needed to determine the responsiveness of the PROMIS pediatric scales to change over time.
This article presents the use of an ant colony optimization (ACO) algorithm for the development of short forms of scales. An example 22-item short form is developed for the Diabetes-39 scale, a quality-of-life scale for diabetes patients, using a sample of 265 diabetes patients. A simulation study comparing the performance of the ACO algorithm and traditionally used methods of item selection is also presented. It is shown that the ACO algorithm outperforms the largest factor loadings and maximum test information item selection methods. The results demonstrate the capabilities of using ACO for creating short-form scales.
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