Ellen C Perrin

Tufts Medical Center, Boston, Massachusetts, United States

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Publications (37)74.89 Total impact

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    ABSTRACT: Neurofeedback (NFB) is an emerging treatment for children with autism spectrum disorder (ASD). This pilot study examined the feasibility of NFB for children with ASD. Ten children ages 7-12 with high functioning ASD and attention difficulties received a NFB attention training intervention. A standardized checklist captured feasibility, including focus during exercises and academic tasks, as well as off-task behaviors. Active behaviors and vocalizations were the most frequent off-task behaviors. Positive reinforcement and breaks including calm breathing exercises were the most common supports. Low motivation was associated with higher feasibility challenges, yet parental involvement and accommodations were helpful. This pilot study shows that it is feasible to conduct NFB sessions with children with high functioning autism and attention difficulties.
    Applied Psychophysiology and Biofeedback 04/2014; · 1.13 Impact Factor
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    ABSTRACT: Objective: To evaluate sustained improvements six months after a 40-session, in-school computer attention training intervention using neurofeedback (NF) or cognitive training (CT) administered to 7–11 year olds with attention-deficit/hyperactivity disorder (ADHD). Methods: One hundred four children were randomly assigned to receive NF, CT, or a control condition, and evaluated six months post-intervention. A three-point growth model assessed change over time across the conditions on: Conners 3-Parent report (Conners 3-P), Behavior Rating Inventory of Executive Function (BRIEF) Parent Rating Scale, and a systematic doubleblinded classroom observation (Behavioral Observation of Students in Schools; BOSS). ANOVA assessed community-initiated changes in stimulant medication. Results: Parent response rates were 94% pre- to post-intervention and 90% at the six-month follow-up. Six months post-intervention, NF participants maintained significant gains on Conners 3-P (Inattention ES=0.34, Executive Functioning ES=0.25, Hyperactivity/Impulsivity ES=0.23) and BRIEF subscales including the composite (ES=0.31), which remained significantly greater than gains found among children in CT and control conditions. Children in the CT condition showed delayed improvement over immediate post-intervention ratings on Conners 3-P Executive Functioning (ES=0.18) and two BRIEF subscales. At the six-month follow-up, NF participants maintained the same stimulant medication dosage, while participants in both CT and control conditions showed statistically and clinically significant increases (9mg, p=0.002 and 13mg, p<0.001 respectively). Conclusion: NF participants made more prompt and greater improvements in ADHD symptoms, sustained at six-month follow-up, than did CT participants or those in the control group. This finding suggests that NF is a promising attention training treatment for children with ADHD. http://pediatrics.aappublications.org/content/early/2014/02/11/peds.2013-2059
    PEDIATRICS 02/2014; 133(3):483-492. · 4.47 Impact Factor
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    ABSTRACT: To evaluate the efficacy of 2 computer attention training systems administered in school for children with attention-deficit hyperactivity disorder (ADHD). Children in second and fourth grade with a diagnosis of ADHD (n = 104) were randomly assigned to neurofeedback (NF) (n = 34), cognitive training (CT) (n = 34), or control (n = 36) conditions. A 2-point growth model assessed change from pre-post intervention on parent reports (Conners 3-Parent [Conners 3-P]; Behavior Rating Inventory of Executive Function [BRIEF] rating scale), teacher reports (Swanson, Kotkin, Agler, M-Flynn and Pelham scale [SKAMP]; Conners 3-Teacher [Conners 3-T]), and systematic classroom observations (Behavioral Observation of Students in Schools [BOSS]). Paired t tests and an analysis of covariance assessed change in medication. Children who received NF showed significant improvement compared with those in the control condition on the Conners 3-P Attention, Executive Functioning and Global Index, on all BRIEF summary indices, and on BOSS motor/verbal off-task behavior. Children who received CT showed no improvement compared to the control condition. Children in the NF condition showed significant improvements compared to those in the CT condition on Conners 3-P Executive Functioning, all BRIEF summary indices, SKAMP Attention, and Conners 3-T Inattention subscales. Stimulant medication dosage in methylphenidate equivalencies significantly increased for children in the CT (8.54 mg) and control (7.05 mg) conditions but not for those in the NF condition (0.29 mg). Neurofeedback made greater improvements in ADHD symptoms compared to both the control and CT conditions. Thus, NF is a promising attention training treatment intervention for children with ADHD. http://journals.lww.com/jrnldbp/Abstract/2014/01000/Neurofeedback_and_Cognitive_Attention_Training_for.3.aspx
    Journal of developmental and behavioral pediatrics: JDBP 01/2014; 35(1):18-27. · 2.27 Impact Factor
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    ABSTRACT: IMPORTANCE Disruptive behavior disorders, such as attention-deficient/hyperactivity disorder and oppositional defiant disorder, are common and stable throughout childhood. These disorders cause long-term morbidity but benefit from early intervention. While symptoms are often evident before preschool, few children receive appropriate treatment during this period. Group parent training, such as the Incredible Years program, has been shown to be effective in improving parenting strategies and reducing children's disruptive behaviors. Because they already monitor young children's behavior and development, primary care pediatricians are in a good position to intervene early when indicated. OBJECTIVE To investigate the feasibility and effectiveness of parent-training groups delivered to parents of toddlers in pediatric primary care settings. DESIGN, SETTING, AND PARTICIPANTS This randomized clinical trial was conducted at 11 diverse pediatric practices in the Greater Boston area. A total of 273 parents of children between 2 and 4 years old who acknowledged disruptive behaviors on a 20-item checklist were included. INTERVENTION A 10-week Incredible Years parent-training group co-led by a research clinician and a pediatric staff member. MAIN OUTCOMES AND MEASURES Self-reports and structured videotaped observations of parent and child behaviors conducted prior to, immediately after, and 12 months after the intervention. RESULTS A total of 150 parents were randomly assigned to the intervention or the waiting-list group. An additional 123 parents were assigned to receive intervention without a randomly selected comparison group. Compared with the waiting-list group, greater improvement was observed in both intervention groups (P < .05). No differences were observed between the randomized and the nonrandomized intervention groups. CONCLUSIONS AND RELEVANCE Self-reports and structured observations provided evidence of improvements in parenting practices and child disruptive behaviors that were attributable to participation in the Incredible Years groups. This study demonstrated the feasibility and effectiveness of parent-training groups conducted in pediatric office settings to reduce disruptive behavior in toddlers. TRIAL REGISTRATION clinicaltrials.gov Identifier: NCT00402857.
    JAMA pediatrics. 11/2013;
  • Ellen C Perrin, Benjamin S Siegel
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    ABSTRACT: Extensive data available from more than 30 years of research reveal that children raised by gay and lesbian parents have demonstrated resilience with regard to social, psychological, and sexual health despite economic and legal disparities and social stigma. Many studies have demonstrated that children's well-being is affected much more by their relationships with their parents, their parents' sense of competence and security, and the presence of social and economic support for the family than by the gender or the sexual orientation of their parents. Lack of opportunity for same-gender couples to marry adds to families' stress, which affects the health and welfare of all household members. Because marriage strengthens families and, in so doing, benefits children's development, children should not be deprived of the opportunity for their parents to be married. Paths to parenthood that include assisted reproductive techniques, adoption, and foster parenting should focus on competency of the parents rather than their sexual orientation.
    PEDIATRICS 03/2013; · 4.47 Impact Factor
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    ABSTRACT: The reliability and validity of the Parent's Observations of Social Interactions (POSI), a new, seven-item screening instrument for autism spectrum disorders (ASD), is examined in two substudies. In Study 1, parents of 217 children (18–48 months) evaluated at a developmental clinic completed intake questionnaires that included the POSI and the Modified Checklist for Autism in Toddlers (M-CHAT) checklist. POSI and M-CHAT scores were compared to clinical evaluation results to assess reliability and validity. In Study 2, parents of 232 children (16–36 months) from both primary care and subspecialty settings completed the POSI, the M-CHAT, and a report of their child's diagnoses. POSI and M-CHAT scores were compared to reported diagnoses to assess reliability and validity. In both studies, the POSI demonstrated adequate internal reliability (Cronbach α = 0.83 and 0.86, respectively). In Study 1, POSI sensitivity (89%) was higher than that for the M-CHAT (71%; p < .05); specificities were not significantly different (POSI: 54%, M-CHAT: 62%). In Study 2, sensitivity (83%) compared favorably to that for the M-CHAT (50%), although specificity was lower (75 vs. 84%). Despite its brevity, the POSI demonstrated good internal reliability and comparable sensitivity/specificity to the M-CHAT checklist in two independent populations. If results are reproduced in larger, more diverse samples, the POSI may provide an efficient method for ASD screening in young children. La fiabilidad y validez de las Observaciones del Progenitor de las Interacciones Sociales (POSI), un nuevo instrumento con 7 puntos para la detección de Trastornos en el Espectro del Autismo (ASD), se examina en dos sub-estudios. Estudio 1: Padres de 217 niños (18-48 meses) evaluaron en una clínica para el desarrollo la completa información de cuestionarios que incluían POSI y la Lista Modificada para Chequear el Autismo en Infantes (M-CHAT). Los puntajes de POSI y M-CHAT fueron comparados con los resultados de evaluación clínica para evaluar la fiabilidad y la validez. Estudio 2: Padres de 232 niños (16-36 meses), tanto del área de cuidado primario como de lugares de sub-especialización, completaron POSI, M-CHAT y un reporte de la diagnosis de sus niños. Los puntajes de POSI y M-CHAT fueron comparados con los diagnósticos reportados para evaluar la fiabilidad y la validez. En ambos estudios, POSI demostró una fiabilidad interna adecuada (Alfa Cronbach 0.83 y 0.86, respectivamente). En el Estudio 1, la sensibilidad en POSI (89%) fue más alta que la de M-CHAT (71%; p < .05); las especificidades no fueron significativamente diferentes (POSI 54%, M-CHAT 62%). En el Estudio 2, la sensibilidad (83%) se comparó favorablemente a la de M-CHAT (50%), aunque la especificidad fue más baja (75% v 84%). A pesar de su brevedad, POSI mostró una buena fiabilidad interna y sensibilidad/especificidad comparable a la lista de chequear M-CHAT en dos grupos independientes. Si se reproducen los resultados en grupos muestras más grandes y diversos, POSI pudiera facilitar un método eficiente para detectar ASD en niños pequeños. La fiabilité et la validité des Observations du Parent des Interactions Sociales (en anglais, Parent's Observations of Social Interactions, abrégé POSI), un nouvel instrument de dépistage de 7 éléments pour les Troubles du Spectre Autistique (abrégé TSA en français), sont examinées à travers deux sous-études. Etude 1: les parents de 217 enfants (de 18 à 48 mois) évalués dans une clinique de développement, ont rempli des questionnaires à l'admission qui incluaient la POSI ainsi que la Checklist Modifiée pour l'Autisme chez les Petits Enfants (Dépistage M-CHAT). Les scores POSI et M-CHAT ont été comparés aux résultats d'évaluation clinique afin d'évaluer la fiabilité et la validité. Etude 2: les parents de 232 enfants (de 16 à 36 mois) de contextes de soin primaire et de sous-spécialités ont rempli la POSI et le dépistage M-CHAT ainsi qu'un rapport des diagnostics de leur enfant. Les scoresPOSI et M-CHAT ont été comparés aux diagnostics afin d'évaluer la fiabilité et la validité. Dans les deux études la POSI a fait preuve de fiabilité interne adéquate (Cronbach alpha 0,83 and 0,86, respectivement). Dans l'Etude 1 la sensibilité POSI (89%) était plus élevé que la M-CHAT (71%; p
    Infant Mental Health Journal 03/2013; 34(2). · 0.61 Impact Factor
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    ABSTRACT: To promote optimal health and well-being of all children, the American Academy of Pediatrics (AAP) supports access for all children to (1) civil marriage rights for their parents and (2) willing and capable foster and adoptive parents, regardless of the parents’ sexual orientation. The AAP has always been an advocate for, and has developed policies to support, the optimal physical, mental, and social health and well-being of all infants, children, adolescents, and young adults. In so doing, the AAP has supported families in all their diversity, because the family has always been the basic social unit in which children develop the supporting and nurturing relationships with adults that they need to thrive. Children may be born to, adopted by, or cared for temporarily by married couples, nonmarried couples, single parents, grandparents, or legal guardians, and any of these may be heterosexual, gay or lesbian, or of another orientation. Children need secure and enduring relationships with committed and nurturing adults to enhance their life experiences for optimal social-emotional and cognitive development. Scientific evidence affirms that children have similar developmental and emotional needs and receive similar parenting whether they are raised by parents of the same or different genders. If a child has 2 living and capable parents who choose to create a permanent bond by way of civil marriage, it is in the best interests of their child(ren) that legal and social institutions allow and support them to do so, irrespective of their sexual orientation. If 2 parents are not available to the child, adoption or foster parenting remain acceptable options to provide a loving home for a child and should be available without regard to the sexual orientation of the parent(s).
    Pediatrics. 01/2013; 131(4):827-830.
  • R Christopher Sheldrick, Ellen C Perrin
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    ABSTRACT: Fewer than half of the nation's pediatricians conduct systematic surveillance of young children's development. Because time and cost are among the barriers, our objective was to create a brief set of parent-report questions about cognitive, motor, and language milestones that is freely available and can be administered and scored quickly. A team of experts developed candidate items after reviewing existing instruments and prior research. We selected final items based on statistical fit to a graded item response model developed and replicated in separate samples enrolled from primary care settings (n = 469 and 308, respectively). We then developed a 10-item form for each visit on the pediatric periodicity schedule. Combining our initial samples with 395 families enrolled from referral clinics, we tested these forms' concurrent validity with respect to the ASQ-3 and parent reports of developmental diagnoses. A final set of 54 items displayed adequate fit to our statistical model regardless of race/ethnicity, education level, and child gender. Beginning at 4 months, scores on 10-item forms displayed consistent associations with the ASQ-3, and all but the 60-month form detected parents' reports of developmental delay with adequate sensitivity and specificity. The Milestones is one element of the Survey of Well-being of Young Children (SWYC), a brief but comprehensive screening instrument for children under 5 years. The Milestones is a set of evidence-based items with individual normative data that are appropriate for pediatric surveillance. In addition, the scoring of 10-item Milestones forms may provide many advantages of a first level developmental screening instrument.
    Academic pediatrics 01/2013; 13(6):577-86.
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    ABSTRACT: OBJECTIVE: To develop and validate the Baby Pediatric Symptom Checklist (BPSC), a brief social/emotional screening instrument for children less than 18 months. The BPSC is modeled after the Pediatric Symptom Checklist (PSC) and is part of the Survey of Wellbeing of Young Children, a comprehensive, freely available screening instrument designed for use in pediatric primary care. METHOD: BPSC items were developed by a team of experts who reviewed existing assessment instruments and relevant research literature. Scale construction and initial validation were conducted with 205 families from pediatric primary care sites and 54 families from referral clinics. A replication sample of 146 additional families were enrolled from an independent set of primary care practices. RESULTS: Exploratory factor analysis revealed 3 dimensions of the BPSC: irritability, inflexibility, and difficulty with routines. Factor structure was confirmed in the replication sample. Retest reliability and internal reliability were adequate (intraclass correlation coefficient >0.70) across subscales, with the exception of the "irritability" subscale's internal reliability in the replication sample. Construct validity of the "irritability" and the "difficulty with routines" subscales is supported by correlations with the Parenting Stress Index and the Ages & Stages Questionnaire: Social/Emotional, but the "inflexibility" subscale seems to be distinct from performance on these instruments. Tests of differential item functioning revealed no significant effects for race/ethnicity, child gender, parent education, or family income. Age-based normative data were calculated for each subscale. CONCLUSION: The BPSC assesses 3 domains of behavior for very young children and shows promise as a social/emotional screening instrument for pediatric primary care.
    Academic pediatrics 10/2012;
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    ABSTRACT: This article describes the development and initial validation of the Preschool Pediatric Symptom Checklist (PPSC), a social/emotional screening instrument for children 18 to 60 months of age. The PPSC was created as part of a comprehensive screening instrument designed for pediatric primary care and is modeled after the Pediatric Symptom Checklist. Items for the PPSC were developed by a team of experts who reviewed existing assessment instruments and relevant research literature. Scale construction and initial validation (including factor analysis and tests of construct validity) were conducted with 292 families from pediatric primary care sites and 354 families from referral clinics. One hundred seventy-one additional families were recruited from primary care sites to obtain an independent replication sample. Exploratory factor analysis revealed 4 dimensions of the PPSC: Externalizing, Internalizing, Attention Problems, and Parenting Challenges. These dimensions were incorporated into a bifactor model that displayed a strong general factor, thus supporting the use of a total score. The PPSC total score shows strong internal and retest reliability, and it identifies children who score in the clinical range of a longer, well-validated, and more comprehensive parent-report instrument (the Child Behavior Checklist), as well as children who are reported to have a range of behavioral diagnoses. Moreover, sensitivity and specificity with respect to these criteria were comparable to those of another well-accepted but longer screener, the Ages & Stages Questionnaire: Social/Emotional. Finally, results for the PPSC total scale remained consistent when replicated in an independent sample. The PPSC shows promise as a social/emotional screening instrument for use in pediatric primary care.
    Academic pediatrics 08/2012; 12(5):456-67.
  • Clinical Pediatrics 06/2012; 51(6):546-50. · 1.27 Impact Factor
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    ABSTRACT: To describe responses to the questions "Do you have concerns about your child's behavior? Development? Learning?" among parents seeking pediatric care, and to analyze their correspondence to formal screening questionnaires. Of 465 parents of children aged 3 to 65 months recruited at pediatric primary care practices in Greater Boston, 451 provided complete data for analysis. After completing a questionnaire that asked whether they had any or all of these concerns, parents filled out a developmental screener (Ages and Stages Questionnaire-3) and a behavioral screener (Ages and Stages Questionnaire: Social-Emotional). One hundred eight parents (24%) reported having at least 1 concern about their child. Greater child age, male gender, and lower family income were associated with more concerns about development, behavior, and learning. Moderate agreement was found between parents' concerns and their responses on screening instruments, but among parents who identified no concerns, 18% were identified as at risk on one or both screening tests. Compared with children who were not identified on either screener, parents of children identified only on the behavioral screener were more likely to have concerns about behavior and parents of children identified on both screeners were more likely to have noted concerns about both behavior and development. No type of concern was associated with identification on the developmental screener alone. Parents' self-report of concerns showed moderate agreement with the results of developmental and behavioral screening instruments. Agreement was higher for behavioral concerns than for developmental concerns.
    Journal of developmental and behavioral pediatrics: JDBP 12/2011; 33(2):156-60. · 2.27 Impact Factor
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    ABSTRACT: To compare the quality of life (QoL), a measure of psychological well-being, of adolescents reared in lesbian-mother families with that of a matched comparison group of adolescents with heterosexual parents. The adolescents in the comparison group were derived from a representative sample of adolescents in Washington state. The second aim of the study was to assess among teens with lesbian mothers whether donor status, maternal relationship continuity, and self-reported stigmatization are associated with QoL. In 1986, prospective lesbian mothers were recruited in Boston, Washington, DC, and San Francisco. Currently, 93% of the National Longitudinal Lesbian Family Study (NLLFS) families are still participating in the study. This report is based on an online questionnaire completed by 78 NLLFS adolescent offspring-39 girls and 39 boys. Six items of the Youth Quality of Life Instrument were used to assess QoL. Also, the NLLFS adolescents were asked whether they had experienced stigmatization, and if so, to describe these experiences (e.g., teasing and ridicule). Mothers were queried about donor status and maternal relationship continuity. The results revealed that the NLLFS adolescents rated their QoL comparably to their counterparts in heterosexual-parent families. Donor status, maternal relationship continuity, and experienced stigmatization were not related to QoL. Adolescent offspring in planned lesbian families do not show differences in QoL when compared with a matched group of adolescents reared in heterosexual families. By investigating QoL, this study provides insight into positive aspects of mental health of adolescents with lesbian mothers.
    Journal of developmental and behavioral pediatrics: JDBP 12/2011; 33(1):17-23. · 2.27 Impact Factor
  • Ellen C Perrin, R Christopher Sheldrick
    JAMA Pediatrics 11/2011; 166(3):287-8. · 4.28 Impact Factor
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    ABSTRACT: Recent mandates and recommendations for formal screening programs are based on the claim that pediatric care providers underidentify children with developmental-behavioral disorders, yet the research to support this claim has not been systematically reviewed. To review research literature for studies regarding pediatric primary care providers' identification of developmental-behavioral problems in children. On the basis of a Medline search conducted on September 22, 2010, using relevant key words, we identified 539 articles for review. We included studies that (1) were conducted in the United States, (2) were published in peer-reviewed journals, (3) included data that addressed pediatric care providers' identification of developmental-behavioral problems in individual patients, (4) included an independent assessment of patients' developmental-behavioral problems, such as diagnostic interviews or validated screening instruments, and (5) reported data sufficient to calculate sensitivity and specificity. Studies were not limited by sample size. Eleven articles met these criteria. We used Quality Assessment of Diagnostic Accuracy Studies (QUADAS) criteria to evaluate study quality. Although the studies were similar in many ways, heterogeneous methodology precluded a meta-analysis. Sensitivities for pediatric care providers ranged from 14% to 54%, and specificities ranged from 69% to 100%. The authors of 1 outlier study reported a sensitivity of 85% and a specificity of 61%. Pediatricians are often the first point of entry into developmental and mental health systems. Knowing their accuracy in identifying children with developmental-behavioral disabilities is essential for implementing optimal evaluation programs and achieving timely identification. Moreover, these statistics are important to consider when planning large-scale screening programs.
    PEDIATRICS 08/2011; 128(2):356-63. · 4.47 Impact Factor
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    ABSTRACT: Objective. This study examined the efficacy of 2 computer-based training systems to teach children with attention deficit/hyperactivity disorder (ADHD) to attend more effectively. Design/methods. A total of 41 children with ADHD from 2 middle schools were randomly assigned to receive 2 sessions a week at school of either neurofeedback (NF) or attention training through a standard computer format (SCF), either immediately or after a 6-month wait (waitlist control group). Parents, children, and teachers completed questionnaires pre- and postintervention. Results. Primary parents in the NF condition reported significant (P < .05) change on Conners's Rating Scales-Revised (CRS-R) and Behavior Assessment Scales for Children (BASC) subscales; and in the SCF condition, they reported significant (P < .05) change on the CRS-R Inattention scale and ADHD index, the BASC Attention Problems Scale, and on the Behavioral Rating Inventory of Executive Functioning (BRIEF). Conclusion. This randomized control trial provides preliminary evidence of the effectiveness of computer-based interventions for ADHD and supports the feasibility of offering them in a school setting.
    Clinical Pediatrics 05/2011; 50(7):615-22. · 1.27 Impact Factor
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    ABSTRACT: To compare adolescent self-reports with two types of parent reports regarding the quality of life (QoL) of adolescents with Autism Spectrum Disorders (ASDs): (1) standard parent reports, in which parents give their own perspective on their adolescent child's QoL and (2) parent proxy reports, in which parents indicate how they believe their adolescent child would answer. Thirty-nine adolescents with ASDs and their parents completed the Pediatric Quality of Life Inventory (PedsQL). Parents completed the form twice, once using standard parent report instructions and again using proxy instructions. Concordance among the three reports was evaluated via Pearson correlations. Differences in means were assessed via ANOVAs. Correlations were higher between parent proxy reports and adolescent self-reports than between standard parent reports and adolescent self-reports. In addition, average scores on the parent proxy reports were closer to adolescents' self-reports than were average scores on the standard parent reports. These results demonstrate that parents of adolescents with ASDs have different opinions about their children's quality of life than their children do, and that they are aware of these differences. If the goal is to reduce discrepancy between the reports of parents and their adolescent children with ASDs, it may be advisable to ask parents to report on their child's QoL as they believe their children would.
    Quality of Life Research 04/2011; 21(1):53-7. · 2.41 Impact Factor
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    ABSTRACT: This study provides preliminary data about a parenting intervention for families of preschoolers with early attention deficit hyperactivity disorder/oppositional defiant disorder symptoms carried out in two diverse primary care pediatric offices. Parents of toddlers completed behavioral screening questionnaires at well-child visits. Eligible parents participated in a 10-week parenting education group using the Incredible Years program. Mothers completed several outcome measures at three time points: before participating in the group, immediately after the group ended, and 6 months thereafter. These measures assessed changes in parenting practices, parenting stress, and child symptoms. Parent and provider satisfaction also were assessed. Mothers reported improvements in parenting skills and a decrease in stress. They also reported a decrease in child aggression and an increase in compliance. Mothers and providers reported high levels of satisfaction. Results support the benefits and feasibility of providing parenting education groups to parents of toddlers in pediatric practice settings.
    Journal of Pediatric Health Care 01/2011; 25(2):77-86. · 1.76 Impact Factor
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    ABSTRACT: This study examined the reliability and validity of self-reported quality of life (QoL) among adolescents with autism spectrum disorders (ASDs) but without mental retardation (IQ >70) using a validated QoL measure, Pediatric Quality of Life Inventory. Secondarily, the self-reported QoL of adolescents with ASDs was compared with published normative data. Thirty-nine adolescents with ASDs and their parents completed a QoL instrument and brief measures of psychosocial distress and self-esteem. A screening test of cognitive abilities was administered to adolescents; parents completed an assessment of behavioral and emotional symptoms and an assessment of the presence and extent of autistic social impairments. Adolescent self-reports of QoL demonstrated internal reliability and concurrent validity. Self-reports on the Pediatric Quality of Life Inventory demonstrated moderate to large positive correlations with a measure of self-esteem and moderate to large negative correlations with measures of anxiety and mood. Concurrent validity with parent proxy reports fell within the range of expected values based on past studies of inter-rater reliability for QoL, with parents of adolescents reporting lower QoL when compared with adolescent reports. Adolescents reported QoL below the population mean for all domains. Results of this study provide preliminary evidence that adolescents with ASDs are able to report on their own QoL in a valid and reliable manner. Based on our findings, the measurement of QoL may be useful for clinical care and research about adolescents with ASDs.
    Journal of developmental and behavioral pediatrics: JDBP 12/2010; 32(2):85-9. · 2.27 Impact Factor
  • Radley C Sheldrick, Ellen C Perrin
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    ABSTRACT: Whether medical services received by children and youth with behavioral health conditions are consistent with a Medical Home has not been systematically studied. The objectives of this study were to examine the variation among four behavioral health conditions in regard to services related to the Medical Home. Cross-sectional analyses of the 2003 National Survey of Children's Health were conducted. Multiple logistic regression analyses tested the impact of behavioral health conditions on medical needs, on Medical Home components, and on likelihood of having a Medical Home overall. Autism, Depression/Anxiety, and Behavior/Conduct problems were associated with reduced likelihood of having a Medical Home, whereas Attention-Deficit Hyperactivity Disorder was associated with increased likelihood. All health conditions predicted increased access to a primary care physician (PCP) and a preventive visit in the past year. However, all were also associated with higher needs for specialty care and all behavioral health conditions except Attention-Deficit Hyperactivity Disorder were associated with difficulties accessing this care. A detailed examination of the receipt of services among children and youth with behavioral health conditions reveals two primary reasons why such care is less likely to be consistent with a Medical Home model: (1) parents are more likely to report needing specialty care; and (2) these needs are less likely to be met. These data suggest that the reason why services received by children and youth with behavioral health conditions are not consistent with the Medical Home has more to do with difficulty accessing specialty care than with problems accessing quality primary care.
    Journal of developmental and behavioral pediatrics: JDBP 01/2010; 31(2):92-9. · 2.27 Impact Factor

Publication Stats

257 Citations
74.89 Total Impact Points

Institutions

  • 2004–2014
    • Tufts Medical Center
      • Department of Pediatrics
      Boston, Massachusetts, United States
  • 2011
    • University of Amsterdam
      • College of Child Development and Education
      Amsterdam, North Holland, Netherlands
    • Beverly Hospital, Boston MA
      Beverly, Massachusetts, United States
    • Tufts University
      • Department of Pediatrics
      Georgia, United States
  • 2008–2011
    • Fitchburg State University
      Fitchburg, Massachusetts, United States
  • 2004–2011
    • Boston Children's Hospital
      Boston, Massachusetts, United States
  • 1999–2000
    • University of Massachusetts Medical School
      • Department of Pediatrics
      Worcester, MA, United States