Constance A. Mara

Paired-Samples Tests of Equivalence

Equivalence tests are used when the objective is to find that two or more groups are nearly equivalent on some outcome, such that any difference is inconsequential. Equivalence tests are available for several research designs, however, paired-samples equivalence tests that are accessible and relevant to the research performed by psychologists have been understudied. This study evaluated parametric and nonparametric two one-sided paired-samples equivalence tests and a standardized paired-samples equivalence test developed by Wellek (2003). The two one-sided procedures had better Type I error control and greater power than Welleks test, with the nonparametric procedure having increased power with non normal distributions.

The Americleft Project: Burden of Care from Secondary Surgery

Background: The burden of care for children with cleft lip and palate extends beyond primary repair. Children may undergo multiple secondary surgeries to improve appearance or speech. The purpose of this study was to compare the use of secondary surgery between cleft centers. Methods: This retrospective cohort study included 130 children with complete unilateral cleft lip and palate treated consecutively at 4 cleft centers in North America. Data were collected on all lip, palate, and nasal surgeries. Nasolabial appearance was rated by a panel of judges using the Asher-McDade scale. Risk of secondary surgery was compared between centers using the log-rank test, and hazard ratios estimated with a Cox proportional hazards model. Results: Median follow-up was 18 years (interquartile range, 15–19). There were significant differences among centers in the risks of secondary lip surgery (P < 0.001) and secondary rhinoplasty (P < 0.001). The cumulative risk of secondary lip surgery by 10 years of age ranged from 5% to 60% among centers. The cumulative risk of secondary rhinoplasty by 20 years of age ranged from 47% to 79% among centers. No significant differences in nasolabial appearance were found between children who underwent secondary lip or nasal surgery and children who underwent only primary surgery (P > 0.10). Conclusions: Although some cleft centers were significantly more likely to perform secondary surgery, the use of secondary surgery did not achieve significantly better nasolabial appearance than what was achieved by children who underwent only primary surgery.

Validation of the PedsQL Epilepsy Module: A pediatric epilepsy‐specific health‐related quality of life measure

To validate a brief and reliable epilepsy‐specific, health‐related quality of life (HRQOL) measure in children with various seizure types, treatments, and demographic characteristics.

Patient Reported Outcomes as Indicators of Pediatric Health Care Quality

Health care reform has increased demand for pediatric health care quality evaluations, particularly those that assess the impact of care on patient and population health outcomes. Many of todays most common childhood conditions are characterized by symptoms, behaviors, and functional limitations that are best assessed as patient reported outcomes (PROs). Although they remain greatly underutilized, PROs have the potential to improve pediatric health care quality assessment at the point of care and through system-level performance evaluations. The functions, benefits, and challenges of these PRO applications are described and illustrated in case examples. Although challenges remain, numerous methodological and technical innovations facilitate the use of PROs as health care quality metrics. These include advances in PRO measure development methodologies, the integration of PRO measures into electronic health records, and developing consensus among providers that PROs provide valuable information that can be used to enhance patient care. Although additional work is needed to address remaining methodological challenges, pediatric PROs are increasingly recognized as valuable indicators of health care quality in the clinical environment and as measures of organization- and provider-level performance.

Adherence to antiepileptic drugs in adolescents with epilepsy

INTRODUCTION The aims of the current study were to identify patterns and predictors of adherence in adolescents with epilepsy over one year, as well as its impact on seizures and health-related quality of life (HRQOL). METHODS Forty-eight adolescents with epilepsy (Mage=14.8+1.5, 69% female, 73% White: NonHispanic) and their caregivers completed questionnaires assessing demographics, epilepsy knowledge, side effects, adherence barriers, family functioning, and HRQOL at quarterly clinic visits over one year. Adherence was monitored electronically via MEMS TrackCaps. Seizures were determined via chart review. RESULTS Baseline adherence was 86.05% and significantly decreased over 12months (b=-2.07, p<0.001). Higher adherence was predicted by higher socioeconomic status (SES) (b=0.04, p<0.05), more side effects (b=0.06, p<0.01), fewer caregiver-reported adherence barriers (b=0.18, p<0.05), and lower family conflict (b=-0.19, p<0.05). Change in adherence over 12months did not significantly predict HRQOL or seizures. CONCLUSIONS This is the first longitudinal study of objective adherence in adolescents with epilepsy. Given adolescence is a period of vulnerability during development, including declining adherence, caregivers are encouraged to continue collaborating with their adolescents around epilepsy management. Adherence barriers represent an ideal target for intervention and can be implemented in the clinic by frontline providers. Multidisciplinary care can address low SES (social work, financial advocates) and family conflict (psychologists, therapists) in patients with the ultimate goal of optimizing adherence and health outcomes.

Rebellious behaviors in adolescents with epilepsy

Objectives The study aims are to (1) examine the prevalence of risk-taking (i.e., behaviors that can be categorized as rebellious or reckless) and (2) determine the influence of risk-taking on adherence, seizures, and health-related quality of life (HRQOL) in adolescents with epilepsy. An exploratory aim was to identify predictors of risk-taking. Methods Fifty-four adolescents with epilepsy (M = 15.33 ± 1.46 years) and caregivers completed questionnaires on demographics, risk-taking, parent-child relations, adolescent inattention/hyperactivity, and HRQOL at four time points across 1 year. Seizure occurrence and electronically monitored adherence were also collected. Results Rebellious behaviors were normative and stable over 1 year in adolescents with epilepsy. Higher rebelliousness was related to poorer adolescent-reported memory HRQOL. The only significant positive predictor of rebellious behaviors was adolescent age. Conclusions Adolescents with epilepsy endorsed normative levels of rebelliousness, which is negatively related to HRQOL. Older adolescents may warrant clinical attention.

Psychosocial Patient-Reported Outcomes in Pediatric and Adolescent Diabetes: a Review and Case Example.

Purpose of ReviewThe purpose of this review is to define psychosocial patient-reported outcomes (PROs) relevant to pediatric and adolescent diabetes populations. Potential domains for PROs include a spectrum of emotional, behavioral, social, physical, overall health, and/or care management areas. A literature review of potential PRO measures, selection criteria, and implementation strategies including a case example will be presented.Recent FindingsAmong the pediatric, adolescent, and emerging adult populations, research indicates a relative higher risk for distress, depression, anxiety, and eating disorders as compared to peers without diabetes. Use of PRO measures can expand providers’ focus beyond glycemic control, or simply hemoglobin A1c, to better appreciate the impact of diabetes on the whole child/adolescent, and provide services that address patients’ individually identified needs, which are most salient to them.SummarySuccessful selection and implementation of psychosocial PRO measures should be designed to include pathways for real-time provider interaction with the patient and respective PRO data to guide clinical care.

How Should Discrepancy Be Assessed in Perfectionism Research? A Psychometric Analysis and Proposed Refinement of the Almost Perfect Scale–Revised

Research on perfectionism with the Almost Perfect Scale–Revised (APS-R) distinguishes adaptive perfectionists versus maladaptive perfectionists based primarily on their responses to the 12-item unidimensional APS-R Discrepancy subscale, which assesses the sense of falling short of standards. People described as adaptive perfectionists have high standards but low levels of discrepancy (i.e., relatively close to attaining these standards). Maladaptive perfectionists have perfectionistic high standards and high levels of discrepancy. In the current work, we re-examine the psychometric properties of the APS-R Discrepancy subscale and illustrate that this supposedly unidimensional discrepancy measure may actually consists of more than one factor. Psychometric analyses of data from student and community samples distinguished a pure five-item discrepancy factor and a second four-item factor measuring dissatisfaction. The five-item factor is recommended as a brief measure of discrepancy from perfection and the four-item factor is recommended as a measure of dissatisfaction with being imperfect. Overall, our results confirm past suggestions that most people with maladaptive perfectionism are characterized jointly by chronic dissatisfaction as well as a sense of being discrepant due to having fallen short of expectations. These findings are discussed in terms of their implications for the assessment of perfectionism, as well as the implications for research and practice.

Establishing clinical meaning and defining important differences for Patient-Reported Outcomes Measurement Information System (PROMIS®) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers

BackgroundPatient-Reported Outcomes Measurement Information System (PROMIS) measures are used increasingly in clinical care. However, for juvenile idiopathic arthritis (JIA), scores lack a framework for interpretation of clinical severity, and minimally important differences (MID) have not been established, which are necessary to evaluate the importance of change.MethodsWe identified clinical severity thresholds for pediatric PROMIS measures of mobility, upper extremity function (UE), fatigue, and pain interference working with adolescents with JIA, parents of JIA patients, and clinicians, using a standard setting methodology modified from educational testing. Item parameters were used to develop clinical vignettes across a range of symptom severity. Vignettes were ordered by severity, and panelists identified adjacent vignettes considered to represent upper and lower boundaries separating category cut-points (i.e., from none/mild problems to moderate/severe). To define MIDs, panelists reviewed a full score report for the vignettes and indicated which items would need to change and by how much to represent “just enough improvement to make a difference.”ResultsFor fatigue and UE, cut-points among panels were within 0.5 SD of each other. For mobility and pain interference, cut-scores among panels were more divergent, with parents setting the lowest cut-scores for increasing severity. The size of MIDs varied by stakeholders (parents estimated largest, followed by patients, then clinicians). MIDs also varied by severity classification of the symptom.ConclusionsWe estimated clinically relevant severity cut-points and MIDs for PROMIS measures for JIA from the perspectives of multiple stakeholders and found notable differences in perspectives.

Evaluating the reliability of an injury prevention screening tool: Test-retest study.

Background A standardized injury prevention (IP) screening tool can identify family risks and allow pediatricians to address behaviors. To assess behavior changes on later screens, the tool must be reliable for an individual and ideally between household members. Little research has examined the reliability of safety screening tool questions. This study utilized test-retest reliability of parent responses on an existing IP questionnaire and also compared responses between household parents. Methods Investigators recruited parents of children 0 to 1 year of age during admission to a tertiary care children’s hospital. When both parents were present, one was chosen as the “primary” respondent. Primary respondents completed the 30-question IP screening tool after consent, and they were re-screened approximately 4 hours later to test individual reliability. The “second” parent, when present, only completed the tool once. All participants received a 10-dollar gift card. Cohen’s Kappa was used to estimate test-retest reliability and inter-rater agreement. Standard test-retest criteria consider Kappa values: 0.0 to 0.40 poor to fair, 0.41 to 0.60 moderate, 0.61 to 0.80 substantial, and 0.81 to 1.00 as almost perfect reliability. Results One hundred five families participated, with five lost to follow-up. Thirty-two (30.5%) parent dyads completed the tool. Primary respondents were generally mothers (88%) and Caucasian (72%). Test-retest of the primary respondents showed their responses to be almost perfect; average 0.82 (SD = 0.13, range 0.49–1.00). Seventeen questions had almost perfect test-retest reliability and 11 had substantial reliability. However, inter-rater agreement between household members for 12 objective questions showed little agreement between responses; inter-rater agreement averaged 0.35 (SD = 0.34, range −0.19–1.00). One question had almost perfect inter-rater agreement and two had substantial inter-rater agreement. Conclusions The IP screening tool used by a single individual had excellent test-retest reliability for nearly all questions. However, when a reporter changes from pre- to postintervention, differences may reflect poor reliability or different subjective experiences rather than true change.