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1.
JCPP Adv ; 4(2): e12233, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38827986

RESUMO

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.

2.
J Rheumatol ; 51(6): 628-636, 2024 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-38224983

RESUMO

OBJECTIVE: To identify the frequency and relative importance of symptoms experienced by adults with fibromyalgia (FM) and determine factors associated with a higher disease burden. METHODS: We conducted semistructured interviews with 15 participants with FM, collecting 1479 quotes regarding the symptomatic burden of FM. We then performed an international cross-sectional study involving 1085 participants with FM to determine the prevalence and relative importance (scale 0-4) of 149 symptoms representing 14 symptomatic themes. We performed subgroup analysis to determine how age, sex, disease duration, medication use, employment status, change in employment status, missing work due to FM, and ability level are related to symptomatic theme prevalence. RESULTS: The symptomatic themes with the highest prevalence in FM were pain (99.8%), muscle tenderness (99.8%), and fatigue (99.3%). The symptomatic themes that had the greatest effect on patients' lives were related to fatigue (2.88), pain (2.85), muscle tenderness (2.79), and impaired sleep and daytime sleepiness (2.70). Symptomatic theme prevalence was most strongly associated with the modified Rankin Scale level of disability, disability status, and change in employment status (on disability vs not on disability). CONCLUSION: Participants with FM identify a variety of symptoms that significantly affect their daily lives. Many of these symptoms, such as fatigue, sleep disturbance, and activity limitation, are life-altering and not related to traditional diagnostic criteria. Symptom prevalence in this population varies across subgroups based on demographic categories and disability status.


Assuntos
Fadiga , Fibromialgia , Humanos , Fibromialgia/epidemiologia , Fibromialgia/fisiopatologia , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Estudos Transversais , Fadiga/epidemiologia , Medidas de Resultados Relatados pelo Paciente , Dor/epidemiologia , Qualidade de Vida , Idoso , Efeitos Psicossociais da Doença , Índice de Gravidade de Doença , Prevalência , Emprego , Avaliação da Deficiência
3.
Infant Ment Health J ; 44(6): 781-793, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37919260

RESUMO

While attention dysregulation is a promising early indicator of neurodevelopmental risk, in particular attention-deficit/hyperactivity disorder (ADHD), it is difficult to characterize clinical concern due to its developmental expectability at the transition to toddlerhood. Thus, explicating the typical:atypical continuum of risk indicators is among the key future directions for research to promote early identification and intervention, and prevent decrements in the attainment of developmental milestones into early childhood. In this paper, we present the Multidimensional Assessment Profiles-Attention Regulation Infant-Toddler (MAPS-AR-IT) Scale, a novel parent-report survey of dimensional, developmentally specified indicators of attention (dys)regulation. Item Response Theory was employed to characterize the typical:atypical spectrum of both normative and more concerning dysregulation (including the contexts in which behavior occurs). We provide evidence of the validity of this measure in capturing the full typical:atypical spectrum via a longitudinal sample of typically developing children at 12-18 months of age (baseline) via concurrent scores on well-validated temperament and clinical measures. We also examine longitudinal stability and predictive validity if the MAPS-AR-IT via a clinical interview of ADHD symptoms at 24-30 months (follow-up). While not diagnostic, we present evidence of the utility of the MAPS-AR-IT in explicating individual neurodevelopmental risk and elucidating the broader typicality of behaviors related to attention (dys)regulation.


Aunque la desregulación de la atención es un prometedor indicador temprano del riesgo neural de desarrollo, en particular el trastorno de déficit en la atención/hiperactividad (ADHD), es difícil caracterizar las preocupaciones clínicas debido al factor de expectativa de desarrollo al momento de la transición a la temprana niñez. De manera que explicar la progresión típica:atípica de indicadores de riesgo está entre las futuras directrices claves para la investigación con el fin de promover la temprana identificación e intervención, y prevenir disminuciones en el alcance de hitos críticos hacia la temprana niñez. En este ensayo, presentamos la Escala de Perfiles de Evaluación Multidimensional - Regulación de la Atención del Infante-Niño Pequeñito (MAPS-AR-IT) una novedosa encuesta de reporte del progenitor, acerca de la (des)regulación de la atención, dimensional y específica para el desarrollo. Aportamos evidencia de la validez de esta medida para captar la completa gama típica:atípica por medio de una muestra longitudinal de niños típicamente en desarrollo, a los 12-18 meses de edad (edad base) por medio de puntajes concurrentes sobre el temperamento bien validado y las medidas clínicas, así como también la estabilidad longitudinal y la validez de predicción por medio de una entrevista clínica de síntomas de ADHD a los 24-30 meses (seguimiento). Se empleó la Teoría de Respuesta al Asunto para caracterizar la gama típica:atípica tanto de la desregulación normativa como de la más preocupante (incluyendo los contextos en los cuales ocurre el comportamiento). Aunque no se trata de diagnóstico, presentamos evidencia de la utilidad de MAPS-AR-IT para explicar el riesgo individual de desarrollo neural y elucidar el más amplio aspecto típico de comportamientos relacionados con la (des)regulación de la atención.


Bien que la dysrégulation de l'attention soit un indicateur précoce prometteur du risque neurodéveloppemental, en particulier le trouble déficitaire de l'attention/hyperactivité (TDHA) il est difficile de caractériser la préoccupation clinique du fait de sa prévisibilité développementale à la transition à la petite enfance. Par conséquent, expliquer le continuum typique:atypique des indicateurs de risque s'avère être une des directions futures de recherches clé pour promouvoir l'identification et l'intervention précoce, et prévenir les baisses dans la réalisation d'étapes développementales importantes jusque dans la petite enfance. Dans cet article nous présentons l'Echelle Multidimensional Assessment Profiles - Attention Regulation Infant-Toddler (MAPS-AR-IT) (échelle de profils d'évaluation multidimensionnelle - régulation de l'attention bébé-petit enfant, abrégée selon l'anglais MAP-AR-IT), une étude nouvelle basée sur les rapports faits par les parents de la (dys)régulation de l'attention dimensionnelle et spécifiée selon le développement. Nous démontrons la validité de cette mesure en capturant l'éventail total typique:atypique au moyen d'un échantillon longitudinal d'enfants se développement typiquement, à 12-18 mois (ligne de case) au moyen de scores concurrents de mesures cliniques et de tempérament bien validées, ainsi qu''une stabilité longitudinale et d'une validité prédictive au moyen d'un entretien Clinique des symptômes THHA à 24-30 mois (suivi). La Item Response Theory (IRT) a été employée pour caractériser l'éventail typique:atypique de la dysrégulation à la fois normative et celle plus inquiétante (y compris les contextes dans lesquels le comportement prend place). Bien que cela ne soit pas diagnostique, nous présentons la preuve de l'utilité de la MAPS-AR-IT en expliquant le risqué neurodéveloppemental individuel et en élucidant la typicalité plus large de comportements liés à la (dys)régulation de l'attention.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Humanos , Pré-Escolar , Lactente , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Fatores de Risco , Temperamento
4.
J Huntingtons Dis ; 11(2): 217-226, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35527560

RESUMO

BACKGROUND: When developed properly, disease-specific patient reported outcome measures have the potential to measure relevant changes in how a patient feels and functions in the context of a therapeutic trial. The Huntington's Disease Health Index (HD-HI) is a multifaceted disease-specific patient reported outcome measure (PROM) designed specifically to satisfy previously published FDA guidance for developing PROMs for product development and labeling claims. OBJECTIVE: In preparation for clinical trials, we examine the validity, reliability, clinical relevance, and patient understanding of the Huntington's Disease Health Index (HD-HI). METHODS: We partnered with 389 people with Huntington's disease (HD) and caregivers to identify the most relevant questions for the HD-HI. We subsequently utilized two rounds of factor analysis, cognitive interviews with fifteen individuals with HD, and test-retest reliability assessments with 25 individuals with HD to refine, evaluate, and optimize the HD-HI. Lastly, we determined the capability of the HD-HI to differentiate between groups of HD participants with high versus low total functional capacity score, prodromal versus manifest HD, and normal ambulation versus mobility impairment. RESULTS: HD participants identified 13 relevant and unique symptomatic domains to be included as subscales in the HD-HI. All HD-HI subscales had a high level of internal consistency and reliability and were found by participants to have acceptable content, relevance, and usability. The total HD-HI score and each subscale score statistically differentiated between groups of HD participants with high versus low disease burden. CONCLUSION: Initial evaluation of the HD-HI supports its validity and reliability as a PROM for assessing how individuals with HD feel and function.


Assuntos
Doença de Huntington , Cuidadores , Efeitos Psicossociais da Doença , Humanos , Medidas de Resultados Relatados pelo Paciente , Reprodutibilidade dos Testes
5.
J Child Fam Stud ; 28(2): 343-353, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31452592

RESUMO

Disruptive behavior in childhood is common. It spans from normative child misbehaviors to clinically-significant and impairing problems. While there are many rating scales evaluating such behaviors, historically, measurement has emphasized counting the number of symptoms present rather than assessing the normal-abnormal spectrum of behavioral expression. This study uses data from 644 early school age children aggregated from two data sources to statistically link a commonly used symptom count measure, the Child Behavior Checklist (CBCL), to a more developmentally-sensitive measure, the Multidimensional Assessment Profile of Disruptive Behavior (MAP-DB). Two links between conceptually similar scales on each measure were developed: CBCL Conduct Problems and MAP-DB Aggression; and CBCL Oppositional Defiant Problems and MAP-DB Temper Loss. We compared two innovative methods-Item Response Theory (IRT) and Deming regression-to determine the optimal linking relationship. Results suggest IRT methods were superior in reducing linking error compared to Deming regression. While Deming regression accurately modeled the mean scores (thus minimizing linking bias), this method could not adequately address the floor effect for scores on the CBCL. For practical purposes, this study provides a crosswalk of score conversions between the CBCL and MAP-DB, such that data aggregation and group comparisons can be made across the two measures; this enables longitudinal analyses with historically-collected CBCL data to transition to the more innovative dimensional scales of the MAP-DB without undo loss of extant data. This study furthers efforts to shift from historical symptom counts to more developmentally-sensitive measurement across the disruptive behaviors spectrum.

6.
J Pediatr Nurs ; 47: 36-43, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31026679

RESUMO

PROBLEM: To determine the safety and efficacy of topical corticosteroid versus vehicle/moisturizer in children under 2 years old (<2 y). ELIGIBILITY CRITERIA: A systematic review and meta-analysis searching PubMed MEDLINE, Embase, Web of Science, Cochrane Database of Controlled Trials, Cochrane Database of Systematic Reviews, DARE, NHS Economic Evaluation, CINAHL, GREAT, and Clinicaltrials.gov. We selected randomized controlled trials (RCTs) comparing topical corticosteroids to vehicle/moisturizer and included children <2 y. Two authors extracted data. SAMPLE: Only one study limited analyses to children <2 y, so our review included participants older than 2 years. Twelve RCTs were included with 2224 participants. Ten studies were industry-sponsored. RESULTS: The proportion of responders to topical corticosteroid across studies was 0.65 (95% CI, 0.54-0.74), as compared to vehicle/moisturizer 0.32 (95% confidence interval (CI), 0.20-0.48). The proportion of adverse events were similar between groups (topical steroids 0.17 (95% CI, 0.08-0.33) vs. vehicle/moisturizer 0.12 (CI 0.02-0.42)). High heterogeneity in treatment response occurred across studies that could not be explained by potential moderators. Mild adrenal suppression occurred in 4 of 157 measured participants (3%) receiving topical corticosteroids. Limitations include the few RCTs on this topic, the inclusion of participants >2 y and outcome measures and reporting methods rarely met CONSORT guidelines. CONCLUSIONS: Topical corticosteroids trended to being more effective and equally safe to vehicle/moisturizers, but generalizability is limited given the dearth of well-designed studies focused on children <2 y. Adverse events from vehicle/moisturizer may be greater than topical corticosteroid due to under treatment. IMPLICATIONS: Further work is needed in this age group.


Assuntos
Corticosteroides/administração & dosagem , Dermatite Atópica/tratamento farmacológico , Creme para a Pele/administração & dosagem , Administração Tópica , Criança , Humanos , Veículos Farmacêuticos
7.
Cancer ; 124(1): 153-160, 2018 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-28885707

RESUMO

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.


Assuntos
Neoplasias/fisiopatologia , Medidas de Resultados Relatados pelo Paciente , Estudos de Coortes , Humanos , Estudos Prospectivos , Reprodutibilidade dos Testes , Inquéritos e Questionários
8.
J Arthroplasty ; 33(2): 608-614.e1, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-29066106

RESUMO

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.


Assuntos
Acetábulo/diagnóstico por imagem , Prótese de Quadril , Ossos Pélvicos/diagnóstico por imagem , Acetábulo/cirurgia , Artroplastia de Quadril/instrumentação , Fluoroscopia , Humanos , Cuidados Intraoperatórios , Imagens de Fantasmas , Postura , Amplitude de Movimento Articular , Rotação
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