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1.
Child Dev ; 95(4): 1416-1424, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38217474

RESUMEN

Cognitive research with developmental samples requires improved methods that support large-scale, diverse, and open science. This paper offers initial evidence to support the Mobile Toolbox (MTB), a self-administered remote smartphone-based cognitive battery, in youth populations, from a pilot sample of 99 children (Mage = 11.79 years; 36% female; 53% White, 33% Black or African American, 9% Asian, and 15% Hispanic). Completion rates (95%-99%), practice performance (96%-100%), internal consistency (0.60-0.98), and correlations with similar NIHTB measures (0.55-0.77) provide the first evidence to support the MTB in a youth sample, although there were some inconsistencies across measures. Preliminary findings provide promising evidence of the MTB in developmental populations, and further studies are encouraged.


Asunto(s)
Estudios de Factibilidad , Aplicaciones Móviles , Humanos , Femenino , Masculino , Niño , Adolescente , Aplicaciones Móviles/normas , Teléfono Inteligente , Pruebas Neuropsicológicas/normas , Proyectos Piloto
2.
Clin Orthop Relat Res ; 482(2): 244-256, 2024 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-37646744

RESUMEN

BACKGROUND: The interpretation of patient-reported outcomes requires appropriate comparison data. Currently, no patient-specific reference data exist for the Patient-Reported Outcome Measurement Information System (PROMIS) Physical Function (PF), Upper Extremity (UE), and Pain Interference (PI) scales for individuals 50 years and older. QUESTIONS/PURPOSES: (1) Can all PROMIS PF, UE, and PI items be used for valid cross-country comparisons in these domains among the United States, the United Kingdom, and Germany? (2) How are age, gender, and country related to PROMIS PF, PROMIS UE, and PROMIS PI scores? (3) What is the relationship of age, gender, and country across individuals with PROMIS PF, PROMIS UE, and PROMIS PI scores ranging from very low to very high? METHODS: We conducted telephone interviews to collect custom PROMIS PF (22 items), UE (eight items), and PI (eight items) short forms, as well as sociodemographic data (age, gender, work status, and education level), with participants randomly selected from the general population older than 50 years in the United States (n = 900), United Kingdom (n = 905), and Germany (n = 921). We focused on these individuals because of their higher prevalence of surgeries and lower physical functioning. Although response rates varied across countries (14% for the United Kingdom, 22% for Germany, and 12% for the United States), we used existing normative data to ensure demographic alignment with the overall populations of these countries. This helped mitigate potential nonresponder bias and enhance the representativeness and validity of our findings. We investigated differential item functioning to determine whether all items can be used for valid crosscultural comparisons. To answer our second research question, we compared age groups, gender, and countries using median regressions. Using imputation of plausible values and quantile regression, we modeled age-, gender-, and country-specific distributions of PROMIS scores to obtain patient-specific reference values and answer our third research question. RESULTS: All items from the PROMIS PF, UE, and PI measures were valid for across-country comparisons. We found clinically meaningful associations of age, gender, and country with PROMIS PF, UE, and PI scores. With age, PROMIS PF scores decreased (age ß Median = -0.35 [95% CI -0.40 to -0.31]), and PROMIS UE scores followed a similar trend (age ß Median = -0.38 [95% CI -0.45 to -0.32]). This means that a 10-year increase in age corresponded to a decline in approximately 3.5 points for the PROMIS PF score-a value that is approximately the minimum clinically important difference (MCID). Concurrently, we observed a modest increase in PROMIS PI scores with age, reaching half the MCID after 20 years. Women in all countries scored higher than men on the PROMIS PI and 1 MCID lower on the PROMIS PF and UE. Additionally, there were higher T-scores for the United States than for the United Kingdom across all domains. The difference in scores ranged from 1.21 points for the PROMIS PF to a more pronounced 3.83 points for the PROMIS UE. Participants from the United States exhibited up to half an MCID lower T-scores than their German counterparts for the PROMIS PF and PROMIS PI. In individuals with high levels of physical function, with each 10-year increase in age, there could be a decrease of up to 4 points in PROMIS PF scores. Across all levels of upper extremity function, women reported lower PROMIS UE scores than men by an average of 5 points. CONCLUSION: Our study provides age-, gender-, and country-specific reference values for PROMIS PF, UE, and PI scores, which can be used by clinicians, researchers, and healthcare policymakers to better interpret patient-reported outcomes and provide more personalized care. These findings are particularly relevant for those collecting patient-reported outcomes in their clinical routine and researchers conducting multinational studies. We provide an internet application ( www.common-metrics.org/PROMIS_PF_and_PI_Reference_scores.php ) for user-friendly accessibility in order to perform age, gender, and country conversions of PROMIS scores. Population reference values can also serve as comparators to data collected with other PROMIS short forms or computerized adaptive tests. LEVEL OF EVIDENCE: Level II, diagnostic study.


Asunto(s)
Medición de Resultados Informados por el Paciente , Extremidad Superior , Femenino , Humanos , Masculino , Extremidad Inferior , Diferencia Mínima Clínicamente Importante , Dolor , Persona de Mediana Edad
3.
J Int Neuropsychol Soc ; 29(10): 933-942, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37989561

RESUMEN

OBJECTIVE: Our objective was to evaluate the psychometric properties of the culturally adapted NIH Toolbox African Languages® when used in Swahili and Dholuo-speaking children in western Kenya. METHOD: Swahili-speaking participants were recruited from Eldoret and Dholuo-speaking participants from Ajigo; all were <14 years of age and enrolled in primary school. Participants completed a demographics questionnaire and five fluid cognition tests of the NIH Toolbox® African Languages program, including Flanker, Dimensional Change Card Sort (DCCS), Picture Sequence Memory, Pattern Comparison, and List Sorting tests. Statistical analyses examined aspects of reliability, including internal consistency (in both languages) and test-retest reliability (in Dholuo only). RESULTS: Participants included 479 children (n = 239, Swahili-speaking; n = 240, Dholuo-speaking). Generally, the tests had acceptable psychometric properties for research use within Swahili- and Dholuo-speaking populations (mean age = 10.5; SD = 2.3). Issues related to shape identification and accuracy over speed limited the utility of DCCS for many participants, with approximately 25% of children unable to match based on shape. These cultural differences affected outcomes of reliability testing among the Dholuo-speaking cohort, where accuracy improved across all five tests, including speed. CONCLUSIONS: There is preliminary evidence that the NIH Toolbox ® African Languages potentially offers a valid assessment of development and performance using tests of fluid cognition in Swahili and Dholuo among research settings. With piloting underway across other diverse settings, future research should gather additional evidence on the clinical utility and acceptability of these tests, specifically through the establishment of norming data among Kenyan regions and evaluating these psychometric properties.


Asunto(s)
Cognición , Lenguaje , Humanos , Niño , Adolescente , Kenia , Psicometría , Reproducibilidad de los Resultados , Pruebas Neuropsicológicas
4.
Qual Life Res ; 32(8): 2353-2360, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-36943606

RESUMEN

PURPOSE: The social responsiveness scale (SRS) is frequently used to quantify the autism-related phenotype and is gaining use in health outcomes research. However, it has a high respondent burden (65 items) for large-scale studies. Further, most evaluations of it have focused on the school-age form, not the preschool form. More validity evidence of shortened forms is necessary in the general population to support the broader health outcomes context of use. METHODS: We evaluated the psychometrics of the SRS in 7030 individuals from multiple predominantly neurotypical samples in order to shorten it based on non-autistic sample metrics. Analyses included item factor analysis, differential item functioning (DIF), and multiple-group item response theory (IRT) to place the SRS items on a comparable scale, which was then simulated via computer adaptive testing (CAT) administration. RESULTS: The SRS was broadly unidimensional with few methodological residual dependencies. On average, males had more autistic characteristics than females, and preschoolers had fewer characteristics than school-age children. The final IRT calibration included 45 items equated across forms, and each form had 11 with significant wording discrepancies and 9 items with near-identical wording that exhibited form-related DIF. The CAT simulation suggested a median of 14 items was sufficient to reach a reliable score, demonstrating its feasibility across the range of impairments. CONCLUSION: IRT allows practitioners the ability to get highly reliable scores with fewer items than the full-length SRS. This supports the future application of the SRS in a computer adaptive testing mode in both neurotypical and ASD samples.


Asunto(s)
Computadores , Calidad de Vida , Masculino , Femenino , Humanos , Preescolar , Calidad de Vida/psicología , Evaluación de Resultado en la Atención de Salud , Psicometría/métodos , Simulación por Computador , Encuestas y Cuestionarios , Reproducibilidad de los Resultados
5.
Qual Life Res ; 32(10): 2779-2787, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37227662

RESUMEN

OBJECTIVE: The objective of this study was to determine the patient-reported outcome measure (PROM) score ranges associated with descriptive labels (i.e., within normal limits, mild, moderate, severe) by using bookmarking methods with orthopedic clinicians and patients who have experienced a bone fracture. STUDY DESIGN AND SETTING: We created vignettes comprised of six items and responses from the Patient-Reported Outcomes Measurement Information System (PROMIS) Upper Extremity Function, Physical Function, and Pain Interference item banks reflecting different levels of severity. Two groups of patients with fractures (n = 11) and two groups of orthopedic clinicians (n = 16) reviewed the vignettes and assigned descriptive labels independently and then discussed as a group until reaching consensus via a videoconference platform. RESULTS: PROMIS Physical Function and Pain Interference thresholds (T = 50, 40, 25/30 and T = 50/55, 60, 65/70, respectively) for patients with bone fractures were consistent with the results from other patient populations. Upper Extremity thresholds were about 10 points (1 SD) more severe (T = 40, 30, 25/20) compared to the other measures. Patient and clinician perspectives were similar. CONCLUSION: Bookmarking methods generated meaningful score thresholds for PROMIS measures. These thresholds between severity categories varied by domain. Threshold values for severity represent important supplemental information to interpret PROMIS scores clinically.


Asunto(s)
Fracturas Óseas , Calidad de Vida , Humanos , Calidad de Vida/psicología , Medición de Resultados Informados por el Paciente , Dolor , Extremidad Superior
6.
Epilepsy Behav ; 128: 108586, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-35158285

RESUMEN

OBJECTIVE: Developmental and epileptic encephalopathies (DEE) entail moderate to profound communication and other impairments that are poorly measured by typical clinical outcomes assessments (COA). We examined the potential of alternative approaches, specifically, the use of raw scores and COAs outside of their intended age ranges. METHODS: In a cross-sectional survey, 120 parents of children with Dravet Syndrome, Lennox-Gastaut syndrome, KCNQ2-DEE, KCNB1-DEE, and SCN2A-DEE (ages 1-35 years) completed the Adaptive Behavior Assessment System-3 for ages 0-5 years, modified checklist for autism (mCHAT), communication and social behavior scales (CSBS), communication matrix (CM), and several parent-reported classifiers of communication. Adaptive Behavior Assessment System communication and social raw scores were the primary and adjunctive outcomes. Floor and ceiling effects, dispersion and convergence with related measures were assessed with appropriate parametric and nonparametric statistical techniques. RESULTS: Median chronological age (CA) was 8.7 years (Interquartile range (IQR): 5.3-13.5). Adaptive Behavior Assessment Systemcommunication and social age equivalents were 12.5 months (IQR 7.5-28) and 16.5 months (IQR 9-31). Most raw scores corresponded to standardized scores indicating performance <3 standard deviations below the general population mean. Adaptive Behavior Assessment System raw scores demonstrated minimal floor and ceiling effects (<1-2.5%). In linear regression models, scores correlated with age under 6 years (communication, p = 0.001; social, p = 0.003) but significantly flattened out thereafter. Scores varied substantially by DEE group (both p < 0.001) and decreased with higher convulsive seizure frequency (communication, p = 0.01, social, p = 0.02). There was good convergence with mCHAT, CSBS, and CM scores (all r > 0.8). SIGNIFICANCE: Raw scores and out-of-range COAs may provide measures that are sensitive at the very limited levels of functioning typical of profoundly impaired, older patients with DEEs. To ensure that targeted trial outcomes are responsive to meaningful change, development of these approaches will be essential to clinical trial readiness for novel therapies for rare DEEs.


Asunto(s)
Encefalopatías , Síndrome de Lennox-Gastaut , Adolescente , Adulto , Niño , Preescolar , Comunicación , Estudios Transversales , Humanos , Lactante , Recién Nacido , Enfermedades Raras , Adulto Joven
7.
Epilepsy Behav ; 137(Pt A): 108953, 2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-36368092

RESUMEN

OBJECTIVE: Developmental and epileptic encephalopathies (DEE) entail moderate to profound impairments in gross motor skills and mobility, which are poorly quantified with clinical outcomes assessments (COA) used in neuro-typical populations. We studied the motor domain of the Adaptive Behavior Assessment System-3 for ages 0-5 years (ABAS) used outside of its intended age range with a focus on raw scores. METHODS: In a cross-sectional survey, 117 parents of children with a variety of DEEs (ages 1-35 years, median = 9) completed the motor domain section of the ABAS. Floor and ceiling effects and associations with epilepsy-related factors were assessed with appropriate parametric and nonparametric statistical techniques. The sensitivity of the ABAS and additional measures of mobility borrowed from the cerebral palsy literature (Functional Activities Questionnaire (FAQ-22) walking level (FAQ-WL)) to different levels of the Functional Mobility Scale was determined. RESULTS: ABAS motor scores corresponded to a median age equivalent of 20.5 months (Inter-Quartile Range (IQR) 8-34). Most raw scores corresponded to standardized scores > 2 standard deviations below the ABAS standardization sample mean. ABAS raw scores demonstrated minimal floor and ceiling effects (<5%). In linear regression models, scores increased with age under 6 years (p < 0.0001) but flattened out thereafter. Scores varied substantially by DEE group (p < 0.001) and decreased with higher convulsive seizure frequency (<0.0001) and number of seizure medications (p < 0.001). ABAS and other motor scores were sensitive to important differences in mobility as represented by the FMS at 5 yards. Further, they correlated with declines in mobility function from 5 to 500 yards. SIGNIFICANCE: An out-of-range COA with raw scores may provide a measure of motor ability and mobility sensitive within the range of moderate to profound impairment seen in patients with DEE. This approach could shorten the time to appropriate COA development and ensure timely clinical trial readiness for novel therapies for rare DEEs.


Asunto(s)
Parálisis Cerebral , Preescolar , Humanos , Lactante , Recién Nacido , Parálisis Cerebral/complicaciones , Estudios Transversales , Destreza Motora , Encuestas y Cuestionarios , Caminata
8.
Qual Life Res ; 31(1): 269-280, 2022 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-34143363

RESUMEN

PURPOSE: The aims of this cross-sectional study were to explore reliability and validity of the Norwegian version of the Patient-Reported Outcome Measurement System®-Profile 57 (PROMIS-57) questionnaire in a general population sample, n = 408, and to examine Item Response properties and factor structure. METHODS: Reliability measures were obtained from factor analysis and item response theory (IRT) methods. Correlations between PROMIS-57 and RAND-36-item health survey (RAND36) were examined for concurrent and discriminant validity. Factor structure and IRT assumptions were examined with factor analysis methods. IRT Item and model fit and graphic plots were inspected, and differential item functioning (DIF) for language, age, gender, and education level were examined. RESULTS: PROMIS-57 demonstrated excellent reliability and satisfactory concurrent and discriminant validity. Factor structure of seven domains was supported. IRT assumptions were met for unidimensionality, local independence, monotonicity, and invariance with no DIF of consequence for language or age groups. Estimated common variance (ECV) per domain and confirmatory factor analysis (CFA) model fit supported unidimensionality for all seven domains. The GRM IRT Model demonstrates acceptable model fit. CONCLUSIONS: The psychometric properties and factor structure of Norwegian PROMIS-57 were satisfactory. Hence, the 57-item questionnaire along with PROMIS-29, and the corresponding 8 and 4 item short forms for physical function, anxiety, depression, fatigue, sleep disturbance, social participation ability and pain interference, are considered suitable for use in research and clinical care in Norwegian populations. Further studies on longitudinal reliability and sensitivity in patient populations and for Norwegian item calibration and/or reference scores are needed.


Asunto(s)
Lenguaje , Calidad de Vida , Estudios Transversales , Humanos , Psicometría , Calidad de Vida/psicología , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
9.
J Med Internet Res ; 24(4): e35120, 2022 04 26.
Artículo en Inglés | MEDLINE | ID: mdl-35471414

RESUMEN

BACKGROUND: Mobile health (mHealth) apps are revolutionizing the way clinicians and researchers monitor and manage the health of their participants. However, many studies using mHealth apps are hampered by substantial participant dropout or attrition, which may impact the representativeness of the sample and the effectiveness of the study. Therefore, it is imperative for researchers to understand what makes participants stay with mHealth apps or studies using mHealth apps. OBJECTIVE: This study aimed to review the current peer-reviewed research literature to identify the notable factors and strategies used in adult participant engagement and retention. METHODS: We conducted a systematic search of PubMed, MEDLINE, and PsycINFO databases for mHealth studies that evaluated and assessed issues or strategies to improve the engagement and retention of adults from 2015 to 2020. We followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Notable themes were identified and narratively compared among different studies. A binomial regression model was generated to examine the factors affecting retention. RESULTS: Of the 389 identified studies, 62 (15.9%) were included in this review. Overall, most studies were partially successful in maintaining participant engagement. Factors related to particular elements of the app (eg, feedback, appropriate reminders, and in-app support from peers or coaches) and research strategies (eg, compensation and niche samples) that promote retention were identified. Factors that obstructed retention were also identified (eg, lack of support features, technical difficulties, and usefulness of the app). The regression model results showed that a participant is more likely to drop out than to be retained. CONCLUSIONS: Retaining participants is an omnipresent challenge in mHealth studies. The insights from this review can help inform future studies about the factors and strategies to improve participant retention.


Asunto(s)
Aplicaciones Móviles , Telemedicina , Adulto , Humanos
10.
J Child Psychol Psychiatry ; 62(1): 97-106, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-32314393

RESUMEN

BACKGROUND: Concerns have been raised that scores on standard measures of autism spectrum disorder (ASD) symptoms may differ as a function of sex. However, these findings are hindered by small female samples studied thus far. The current study evaluated if, after accounting for age, IQ, and language level, sex affects ASD severity estimates from diagnostic measures among children with ASD. METHODS: Data were obtained from eight sources comprising 27 sites. Linear mixed-effects models, including a random effect for site, were fit for 10 outcomes (Autism Diagnostic Observation Schedule [ADOS] domain-level calibrated severity scores, Autism Diagnostic Interview-Revised [ADI-R] raw scores by age-based algorithm, and raw scores from the two indices on the Social Responsiveness Scale [SRS]). Sex was added to the models after controlling for age, NVIQ, and an indicator for language level. RESULTS: Sex significantly improved model fit for half of the outcomes, but least square mean differences were generally negligible (effect sizes [ES] < 0.20), increasing to small to moderate in adolescence (ES < 0.40). Boys received more severe RRB scores than girls on both the ADOS and ADI-R (age 4 + algorithm), and girls received more severe scores than boys on both SRS indices, which emerged in adolescence. CONCLUSIONS: This study combined several available databases to create the largest sample of girls with ASD diagnoses. We found minimal differences due to sex beyond other known influences on ASD severity indicators. This may suggest that, among children who ultimately receive a clinical ASD diagnosis, severity estimates do not systematically differ to such an extent that sex-specific scoring procedures would be necessary. However, given the limitations inherent in clinically ascertained samples, future research must address questions about systematic sex differences among children or adults who do not receive clinical diagnoses of ASD. Moreover, while the current study helps resolve questions about widely used diagnostic instruments, we could not address sex differences in phenotypic aspects outside of these scores.


Asunto(s)
Trastorno del Espectro Autista , Trastorno Autístico , Adolescente , Adulto , Trastorno del Espectro Autista/diagnóstico , Niño , Preescolar , Análisis de Datos , Femenino , Humanos , Masculino , Caracteres Sexuales
11.
Epilepsy Behav ; 119: 107958, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-33892287

RESUMEN

OBJECTIVES: To determine the suitability of the Aberrant Behavior Checklist (ABC)-a common measure used in clinical trials for treatment of challenging behaviors of autism-as an outcome measure for pharmacological and behavioral interventions for young people with Developmental and Epileptic Encephalopathies (DEEs). METHODS: We assessed score profiles on the ABC in a sample of 122 young people with DEEs, including Dravet and Lennox-Gastaut syndromes, and KCNQ2- SCN2A-, and KCNB1-associated disorders. Then we examined its internal structure using item cluster analysis. We used both unrestricted item cluster analysis to determine the number of item clusters that maximize reliability and restricted analyses in which we pre-specified models with 5-, 6-, and 7-clusters, to examine consistency with previous factor analytic studies. We also conducted validity analysis on the various scoring methods with age, sex, and autism spectrum screening measure scores. RESULTS: Unrestricted item cluster analysis suggested that three clusters maximized reliability of ABC scores. These broadly represented other-directed behaviors (i.e., "externalizing"), self-directed behaviors (i.e., "internalizing"), and inappropriate speech. Restricted models separated item clusters for stereotypy from other self-directed problem behaviors, and self-injurious behaviors from the other externalizing behaviors. Validity analysis also supported these structures. Overall, all scores were low, and less than 20% of DEE participants had symptoms severe enough to qualify for most randomized trials of behavioral therapies. SIGNIFICANCE: These results are broadly consistent with the extant ABC scoring algorithms. They suggest a high internal consistency reliability, which may support the use of the ABC in future clinical trials in patients with DEEs who exhibit the behaviors assessed by the ABC. Alternatively, concerns about overall low scores raise cautions about using the ABC as a measure of behavior in unselected populations with DEE.


Asunto(s)
Trastorno Autístico , Síndrome de Lennox-Gastaut , Conducta Autodestructiva , Adolescente , Lista de Verificación , Humanos , Reproducibilidad de los Resultados
12.
Cogn Dev ; 582021.
Artículo en Inglés | MEDLINE | ID: mdl-33833479

RESUMEN

Testing cognitive skill development is important for diagnostic, prognostic, and monitoring purposes, especially for young children and individuals with neurodevelopmental disorders. Developmental tests have been created for infants and toddlers, while traditional IQ tests are often employed beginning in the later preschool period. However, IQ tests rely on developmental skills that are rapidly changing during early childhood. Here, we introduce the idea of prerequisite skills in developmental domains, which are discrete skills required for, but not explicitly tested by, traditional IQ tests. Focusing on general cognition, particularly among children with a chronological or mental age under 4 years, may fail to capture important nuances in skill development. New skill-based assessments are needed in general, and in particular for categorization, which is foundational to higher-order cognitive skills. Novel measures quantifying categorization skills would provide a more sensitive measure of development for young children and older individuals with low developmental levels.

13.
J Pediatr Psychol ; 45(3): 271-280, 2020 04 01.
Artículo en Inglés | MEDLINE | ID: mdl-31633790

RESUMEN

OBJECTIVE: To conduct an evidence-based review of adolescent self-report depression measures and to demonstrate how various measures can be rescored onto a harmonized metric. METHOD: Six widely used person-reported outcome measures (PROMs) were reviewed. Psychometric properties were evaluated using previously published guidance for PROMs. Next, two secondary data sources (from an outpatient behavioral health clinic and from the general population) were evaluated to harmonize scores across three of the measures. Both item response theory and equipercentile linking methods were used and compared. RESULTS: All six PROMs demonstrated a high evidence base for widespread use depending on the purpose of the assessments. Adolescent involvement when developing the PROM for content validity and floor or ceiling effects were the least frequent available evidence. Three of the PROMs were linked to the PROMIS® Pediatric Depressive Symptoms v2.0 (PROMIS-PedDepSx) metric. The scales were highly correlated and essentially unidimensional when aggregated. All linking methods were broadly comparable. Group-level score conversions are recommended to minimize linking bias. CONCLUSIONS: There are a number of strong, widely used PROMs for the evidence-based assessment (EBD) of adolescent depression. However, score comparability is a concern whenever there is a proliferation of measures. Harmonized score metrics support data aggregation and re-analysis. Using four PROMs, one of which served as the scoring metric, we demonstrated the possibility of harmonized depression scores. Future directions for EBD should evaluate whether harmonized PROMs for other pediatric health domains would be useful.


Asunto(s)
Depresión/diagnóstico , Medición de Resultados Informados por el Paciente , Adolescente , Niño , Femenino , Humanos , Masculino , Psicometría , Reproducibilidad de los Resultados , Autoinforme
14.
Qual Life Res ; 29(4): 1123-1135, 2020 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-31894506

RESUMEN

PURPOSE: To develop a Dutch-Flemish translation of the PROMIS® upper extremity (PROMIS-UE) item bank v2.0, and to investigate its cross-cultural and construct validity as well as its floor and ceiling effects in patients with musculoskeletal UE disorders. METHODS: State of the art translation methodology was used to develop the Dutch-Flemish PROMIS-UE item bank v2.0. The item bank and four legacy instruments were administered to 205 Dutch patients with musculoskeletal UE disorders visiting an orthopedic outpatient clinic. The validity of cross-cultural comparisons between English and Dutch patients was evaluated by studying differential item functioning (DIF) for language (Dutch vs. English) with ordinal logistic regression models and McFadden's pseudo R2-change of ≥ 2% as critical value. Construct validity was assessed by formulating a priori hypotheses and calculating correlations with legacy instruments. Floor/ceiling effects were evaluated by determining the proportion of patients who achieved the lowest/highest possible raw score. RESULTS: Eight items showed DIF for language, but their impact on the test score was negligible. The item bank correlated, as hypothesized, moderately with the Dutch-Flemish PROMIS pain intensity item (Pearson's r = - 0.43) and strongly with the Disabilities of the Arm, Shoulder and Hand questionnaire, Subscale Disability/Symptoms (Spearman's ρ = - 0.87), the Functional Index for Hand Osteoarthritis (ρ = - 0.86), and the Michigan Hand Outcomes Questionnaire, Subscale Activities of Daily Living (ρ = 0.87). No patients achieved the lowest or highest possible raw score. CONCLUSIONS: A Dutch-Flemish PROMIS-UE item bank v2.0 has been developed that showed sufficient cross-cultural and construct validity as well as absence of floor and ceiling effects.


Asunto(s)
Actividades Cotidianas/psicología , Comparación Transcultural , Enfermedades Musculoesqueléticas/psicología , Psicometría/métodos , Calidad de Vida/psicología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Etnicidad , Femenino , Humanos , Lenguaje , Modelos Logísticos , Masculino , Persona de Mediana Edad , Países Bajos , Osteoartritis/psicología , Encuestas y Cuestionarios , Traducciones , Extremidad Superior/fisiopatología , Adulto Joven
15.
J Clin Child Adolesc Psychol ; 48(3): 539-554, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30916591

RESUMEN

Mental disorders are the predominant chronic diseases of youth, with substantial life span morbidity and mortality. A wealth of evidence demonstrates that the neurodevelopmental roots of common mental health problems are present in early childhood. Unfortunately, this has not been translated to systematic strategies for improving population-level mental health at this most malleable neurodevelopmental period. We lay out a translational Mental Health, Earlier road map as a key future direction for prevention of mental disorder. This paradigm shift aims to reduce population attributable risk of mental disorder emanating from early life, by preventing, attenuating, or delaying onset/course of chronic psychopathology via the promotion of self-regulation in early childhood within large-scale health care delivery systems. The Earlier Pillar rests on a "science of when to worry" that (a) optimizes clinical assessment methods for characterizing probabilistic clinical risk beginning in infancy via deliberate incorporation of neurodevelopmental heterogeneity, and (b) universal primary-care-based screening targeting patterns of dysregulated irritability as a robust transdiagnostic marker of vulnerability to life span mental health problems. The core of the Healthier Pillar is provision of low-intensity selective intervention promoting self-regulation for young children with developmentally atypical patterns of irritability within an implementation science framework in pediatric primary care to ensure highest population impact and sustainability. These Mental Health, Earlier strategies hold much promise for transforming clinical outlooks and ensuring young children's mental health and well-being in a manner that reverberates throughout the life span.


Asunto(s)
Trastornos Mentales/prevención & control , Trastornos Psicóticos/prevención & control , Adolescente , Niño , Preescolar , Humanos , Trastornos Mentales/psicología
16.
Cancer ; 124(1): 153-160, 2018 Jan 01.
Artículo en Inglés | MEDLINE | ID: mdl-28885707

RESUMEN

BACKGROUND: Measuring patient-reported outcomes (PROs) is becoming an integral component of quality improvement initiatives, clinical care, and research studies in cancer, including comparative effectiveness research. However, the number of PROs limits comparability across studies. Herein, the authors attempted to link the Functional Assessment of Cancer Therapy-General Physical Well-Being (FACT-G PWB) subscale with the Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function (PF) calibrated item bank. The also sought to augment a subset of the conceptually most similar FACT-G PWB items with PROMIS PF items to improve the linking. METHODS: Baseline data from 5506 participants in the Measuring Your Health (MY-Health) study were used to identify the optimal items for linking FACT-G PWB with PROMIS PF. A mixed methods approach identified the optimal items for creating the 5-item FACT/PROMIS-PF5 scale. Both the linked and augmented relationships were cross-validated using the follow-up MY-Health data. RESULTS: A 5-item FACT-G PWB item subset was found to be optimal for linking with PROMIS PF. In addition, a 2-item subset, including only items that were conceptually very similar to the PROMIS item bank content, were augmented with 3 PROMIS PF items. This new FACT/PROMIS-PF5 provided superior score recovery. CONCLUSIONS: The PROMIS PF metric allows for the evaluation of the extent to which similar questionnaires can be linked and therefore expressed on the same metric. These results allow for the aggregation of existing data and provide an optimal measure for future studies wishing to use the FACT yet also report on the PROMIS PF metric. Cancer 2018;124:153-60. © 2017 American Cancer Society.


Asunto(s)
Neoplasias/fisiopatología , Medición de Resultados Informados por el Paciente , Estudios de Cohortes , Humanos , Estudios Prospectivos , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
17.
J Arthroplasty ; 33(2): 608-614.e1, 2018 02.
Artículo en Inglés | MEDLINE | ID: mdl-29066106

RESUMEN

BACKGROUND: Intraoperative fluoroscopy aims to improve component position in total hip arthroplasty. Measurement bias related to image quality, however, has not been quantified. We aim to quantify measurement bias in the interpretation of acetabular component position as a function of pelvis and fluoroscopic beam position in a simulated supine total hip arthroplasty model. METHODS: Posterior-anterior pelvis and hip images were obtained using a previously described pelvic model with known acetabular component position. Pelvic position was varied in 5° increments of pelvis rotation (iliac-obturator) and tilt (inlet-outlet), and in 1 cm increments from beam center in cranial-caudal and medial-lateral planes. Multiple regression analyses were conducted to evaluate the relationship between the resulting bias in interpretation of component position relative to pelvis position. RESULTS: Anteversion and abduction measurement bias increased exponentially with increasing deviation in rotation and tilt. Greater bias occurred for anteversion than for abduction. Hip centered images were less affected by pelvis malposition than pelvis centered images. Deviations of beam center within 5 cm in the coronal plane did not introduce measurement bias greater than 5°. An arbitrarily defined acceptable bias of ±5° for both abduction and anteversion was used to identify a range of optimum pelvic positioning each for hip and pelvis centered imaging. CONCLUSION: Accurate measurement of acetabular component abduction and anteversion, especially anteversion, is sensitive to proper pelvic position relative to the chosen radiographic plane. An acceptable measurement bias of ±5° is achieved when the pelvis is oriented within a newly identified range of optimum pelvic positioning.


Asunto(s)
Acetábulo/diagnóstico por imagen , Prótesis de Cadera , Huesos Pélvicos/diagnóstico por imagen , Acetábulo/cirugía , Artroplastia de Reemplazo de Cadera/instrumentación , Fluoroscopía , Humanos , Cuidados Intraoperatorios , Fantasmas de Imagen , Postura , Rango del Movimiento Articular , Rotación
19.
Qual Life Res ; 26(5): 1119-1128, 2017 05.
Artículo en Inglés | MEDLINE | ID: mdl-27815821

RESUMEN

PURPOSE: Depression is a significant mental health concern. There are numerous depression questionnaires, several of which can be scored onto the Patient Reported Outcomes Measurement Information System (PROMIS®) Depression metric. This study expands the unified metric by linking depression subscales from the Adult Self-Report (ASR) and the Brief Symptom Inventory (BSI) to it. METHODS: An online sample of 2009 men who have sex with men (MSM) was recruited. Item factor analysis was used to evaluate the dimensionality of the aggregated measures and confirm the statistical assumptions for linking. Then, linking was conducted using equipercentile and item response theory (IRT) methods. Equipercentile linking considered varying degrees of post-smoothing. IRT-based linking used fixed-anchor calibration and separate calibration with Stocking-Lord linking constants. RESULTS: All three scales were broadly unidimensional. This MSM sample had slightly higher average depression scores than the general population (mean = 54.4, SD = 9.6). Both linking methods provided robust, largely comparable results. Subgroup invariance held for age, race, and HIV status. Given the broad comparability across methods, the crosswalk between raw sum scores and the unified T-score metric used fixed-anchor IRT-based methods. CONCLUSIONS: PROMIS provides a unified, interpretable metric for depression reporting. The results of this study allow the depression subscales from the ASR and BSI to be rescored onto the unified metric with reasonable caution. This will benefit epidemiological projects aggregating data across various measures or time points.


Asunto(s)
Depresión/diagnóstico , Perfil de Impacto de Enfermedad , Adolescente , Adulto , Depresión/psicología , Femenino , Humanos , Masculino , Autoinforme , Encuestas y Cuestionarios , Adulto Joven
20.
JCPP Adv ; 4(2): e12233, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38827986

RESUMEN

Objective: Early measurement of atypical disruptive behavior within autistic children is critical for later referrals to behavioral screenings, diagnoses, and services. Disruptive behavior in autistic toddlers is often measured using a categorical approach and identifies the presence or absence of behavior. In contrast, dimensional approaches evaluate behavior on a spectrum of typical to atypical by measuring the clinical salience of disruptive behavior. We sought to assess the validity of the Infant/Toddler version of the multidimensional assessment profile of disruptive behavior (MAP-DB-IT), a dimensional approach measurement tool, in a sample of autistic toddlers. Methods: Autistic toddlers (n = 82, M age = 33.2 months, SD = 6.28 months) and their mothers received 8 weeks of caregiver-mediated social communication intervention. Mothers completed the MAP-DB-IT and the Infant Toddler Social Emotional Assessment (ITSEA) across three timepoints: before intervention, immediately after intervention, and at 3 months post-intervention follow-up. The MAP-DB-IT provided scores for three subdomains: temper loss, noncompliance, and aggression (generically or specifically with siblings). Ratings on the MAP-DB-IT were compared to the ITSEA using several analytic strategies such as evaluating (a) the internal consistency of the MAP-DB-IT domain scores; (b) the convergent validity between the two measures; and (c) its convergent change due to intervention and if this varied by child characteristics. Results: The MAP-DB-IT demonstrated excellent internal consistency across all four subdomains. We evaluated convergent validity and found positive correlations between the (a) ITSEA externalizing and MAP-DB-IT aggression domain, (b) ITSEA externalizing and MAP-DB-IT aggression with siblings domain, and (c) ITSEA dysregulation and MAP-DB-IT temper loss domain. Conclusion: The MAP-DB-IT is a valid measurement tool for disruptive behavior in autistic toddlers. Clinicians should consider the use of the MAP-DB-IT for young autistic clients presenting with disruptive behavior to (a) discriminate between early developmentally appropriate tantrums from clinically salient dysregulation, and (b) refer to additional behavioral evaluations and services.

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