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  • The Meaning of Attention-Deficit/Hyperactivity Disorder Medication and Parents' Initiation and Continuity of Treatment for Their Child
    UMB Dataset

    Authors
    Susan dosReis
    Matthew P. Mychailyszyn
    Sara E. Evans-Lacko
    Alicia Beltran
    2 more author(s)...
    Description

    This study investigated the relationship between caregivers’ early views of ADHD treatment and the decision to initiate and continue medication for their child. 48 caregivers of newly diagnosed children participated in qualitative, semistructured telephone interviews with 6 and 12 month follow-ups. Analysis of the initial interview responses revealed 4 categories associated with caregiver perspectives: a) illness oriented, b) problem oriented, c) generally acceptable and, d) unacceptable. This dataset includes demographic information, family history of psychiatric illness, comorbid diagnoses, use of medication, and transcripts of initial, 6 month, and 12 month follow-up interviews.

    Subject
    Attention Deficit Disorder with Hyperactivity
    Caregivers
    Psychotropic Drugs
    Geographic Coverage
    Maryland
  • Attitudes About Stimulant Medication for Attention-Deficit/Hyperactivity Disorder Among African American Families in an Inner City
    UMB Dataset

    Authors
    Susan dosReis
    Arlene Butz
    Paul H. Lipkin
    Julia S. Anixt
    2 more author(s)...
    Description

    This dataset consists of survey responses from 57 African American parents/caregivers whose child was receiving care for ADHD in a university-affiliated pediatric primary care unit. The 47 item questionnaire entitled Attitudes, Satisfaction, Knowledge, and Medication Experiences (ASK-ME) was developed by the primary author to assess views of stimulant medication for ADHD. In addition to demographic information, the dataset includes treatment characteristics, whether or not the child received counseling, and responses to 7 items specifically related to attitude toward medication. A copy of the survey is available from Dr. Susan dosReis upon request.

    Subject
    Attention Deficit Disorder with Hyperactivity
    Caregivers
    Psychotropic Drugs
    Geographic Coverage
    Baltimore (Md.)
  • Best-Worst Scaling to Prioritize Outcomes Meaningful to Caregivers of Youth with Mental Health Multimorbidities: A Pilot Study
    UMB Dataset

    Authors
    Susan dosReis
    Wendy Castillo Camelo
    Melissa M. Ross
    Saad Tariq
    Description

    This pilot study tested the use of a best-worst scaling (BWS) instrument to aid caregivers of a child with mental health comorbidities in clarifying preferences for treatment outcomes. BWS methodology closely approximates real-life decision-making by requiring the selection of one “most important” and one “least important” among a group of competing attributes. 38 caregivers were recruited from support groups in Maryland from March through July of 2015. Criteria for participation were a) their child was 21 years or younger, b) was diagnosed with a developmental delay related to cognitive or emotional disability and, c) with a comorbid mental illness (i.e. ADHD, depression, anxiety, etc.). Subsequent to survey completion, the caregivers took part in one of 6 debriefing sessions to determine the ease of comprehension, relevance of the concepts, distinctiveness of the statements, and clarity of language. The dataset includes family demographics, child characteristics (diagnoses, type of treatment, etc.), session transcripts, and statistics associated with the caregiver responses to the attributes included in the BWS instrument.

    Subject
    Caregivers
    Comorbidity
    Decision Making
    Developmental Disabilities
    Geographic Coverage
    Maryland
    Timeframe
    2015
  • Stigmatizing Experiences of Parents of Children with a New Diagnosis of ADHD
    UMB Dataset

    Authors
    Susan dosReis
    Crystal L. Barksdale
    Andrea Sherman
    Kate Maloney
    1 more author(s)...
    Description

    This dataset is the result of continued analysis of data collected from qualified, semistructured telephone interviews of 48 caregivers of newly diagnosed children. The initial evaluation of interview results focused on their early views of ADHD treatment and the decision to initiate and continue medication for their child (see “Related Datasets” below”). This study concentrated on how caregivers and their children experience mental health stigma. Responses were classified into 6 categories: a) concerns with labeling, b) feelings of social isolation and rejection, c) perceptions of a dismissive society, d) influence of negative public views, e) exposure to negative media and, f) mistrust of medical assessments. The dataset includes demographic, family history of psychiatric illness, comorbid diagnoses, characteristics associated with stigmatizing experiences, and transcripts of initial, 6, and 12 month follow-up interviews.

    Subject
    Attention Deficit Disorder with Hyperactivity
    Caregivers
    Psychotropic Drugs
    Social Stigma
    Geographic Coverage
    Maryland
  • Parental Perceptions and Satisfaction with Stimulant Medication for Attention-Deficit Hyperactivity Disorder
    UMB Dataset

    Authors
    Susan dosReis
    Julie Magno Zito
    Daniel J. Safer
    Karen L. Soeken
    2 more author(s)...
    Description

    247 caregivers of a child diagnosed with ADHD completed a survey to assess their attitude and level of satisfaction with their child’s stimulant treatment. The participants were recruited from six pediatric facilities associated with a large health maintenance organization (HMO). Eligibility requirements included: a) the child was under 20 years of age, b) had taken ADHD medication within the last 12 months and, c) the primary caregiver knew the type of stimulant prescribed. The 47 item self-administered Attitudes, Satisfaction, Knowledge, and Medication Experiences (ASK-ME) survey is comprised of 5 sections: medication treatment characteristics, knowledge assessment, attitude and satisfaction scales, and demographic characteristics.

    Subject
    Attention Deficit Disorder with Hyperactivity
    Caregivers
    Psychotropic Drugs
    Geographic Coverage
    Virginia
  • Immunologic Response to ART by Age Among Treatment-Naive Patients in Sub-Saharan Africa
    UMB Dataset

    Alternate Title(s)
    Immunologic Response to Antiretroviral Therapy by Age Among Treatment-Naive Patients in Sub-Saharan Africa
    Authors
    Kristen A. Stafford
    Laurence S. Magder
    Laura L. Hungerford
    Jack M. Guralnik
    3 more author(s)...
    Description

    This study investigated the association of age with CD4+ cell counts of HIV patients receiving antiretroviral treatment (ART) over a 4 year period. Data were collected from 126,672 previously treatment-naïve patients in 4 Sub-Saharan African nations. The baseline CD4+ count was measured at onset of ART and at 6-month intervals thereafter. The predictor variable was the age at initiation of therapy with ages grouped in five 10-year ranges: 20-29, 30-39, 40-49, 50-59, and 60 and over. The following 8 baseline covariates were also noted: sex, WHO stage, functional status, active TB infection, active cryptococcal disease, active P. jiroveci pneumonia, other active opportunistic infections, and ART regimen. The resulting dataset includes 466,482 repeated CD4+ count measurements with demographic and other patient-related characteristics.

    Subject
    HIV Infections
    Geographic Coverage
    Kenya
    Nigeria
    Tanzania
    Uganda
  • Factors Associated with Outcomes of Pre-ART HIV Care
    UMB Dataset

    Alternate Title(s)
    Factors Associated with Outcomes of Pre-Antiretroviral HIV Care
    Authors
    Kristen A. Stafford
    Lucy W. Nganga
    Tuhuma Tulli
    Karen G. Fleischman Foreit
    Description

    In 2015 the World Health Organization (WHO) eliminated CD4 restrictions for initiating antiretroviral therapy (ART) for people living with HIV (PLHIV) in developing countries. However, the success of therapy is also dependent upon additional health and demographic characteristics of HIV patients at the time they enroll in care. This study investigated pre-ART (time between enrollment and initiation of ART) factors associated with transition to therapy. Data was compiled from a review of 195,011 records of ART-naïve adults enrolled in HIV care and treatment facilities supported by AIDSRelief in Kenya and Tanzania. The outcome variable was transition out of pre-ART care by one of 4 mutually exclusive modes: started ART, died before ART initiation, lost to follow-up (LTFU), and transferred to another facility. The following baseline covariates were analyzed for their relevance to the mode of transition: sex, age at enrollment, CD4 count at enrollment, presence of tuberculosis at enrollment, presence of cryptococcal disease at enrollment, presence of other active opportunistic infections, and year of enrollment in care. The dataset includes demographic data and clinical measures.

    Subject
    HIV Infections
    Geographic Coverage
    Kenya
    Tanzania
  • Amish Complex Genetic Disease Database
    UMB Dataset

    Description

    The Amish Research Group of the University of Maryland School of Medicine has been studying the Old Order Amish population in Lancaster County, PA, since 1993. This database currently consists of health-related data on over 7,000 adults resulting from studies ranging from population and basic science to clinical and translational research. Areas of investigation include: Cardiovascular Risk, Diabetes, Bone Health, Blood Pressure, Vascular Imaging, Aging, Breast Tissue Density, Platelet Aggregation, Microbiome, Wellness, and Brain Imaging. Extensive genetic data (genotyping and sequencing) is also available.

    Subject
    Amish
    Ethnic Groups/genetics
    Genetics, Population
    Health Status Indicators
    Geographic Coverage
    Pennsylvania
    Access Rights
    Access granted on an individual basis dependent upon request and consent considerations
    Local Experts
    Alan R. Shuldiner
    Braxton C. Mitchell
  • Psychotropic Polypharmacy Among Youths With Serious Emotional and Behavioral Disorders Receiving Coordinated Care Services
    UMB Dataset

    Authors
    Susan dosReis
    Benjamin Wu
    Eric J. Bruns
    Ming-Hui Tai
    2 more author(s)...
    Description

    This dataset represents a comparison of polypharmacy among youth with serious emotional and behavioral disorders enrolled in coordinated care services (CCS) versus those receiving traditional mental health services. Data were extracted from Medicaid administrative claims (demographic, diagnosis by ICD-9 code, procedure codes, and psychotropic medication), child welfare administrative records, and juvenile justice records. The final analytic sample included a total of 814 CCS youths and 993 in the traditional care cohort.

    Subject
    Child Behavior Disorders
    Medicaid
    Psychotropic Drugs
    Geographic Coverage
    Maryland
  • Antipsychotic Treatment Among Youth in Foster Care
    UMB Dataset

    Authors
    Susan dosReis
    Yesel Yoon
    David M. Rubin
    Mark A. Riddle
    2 more author(s)...
    Description

    Data from Medicaid fee-for-service and managed care claims from one Mid-Atlantic state were analyzed for this cross-sectional study. The dataset consists of a total of 16,969 youths under the age of 20 with a mental health diagnosis and a pharmacy claim for antipsychotic medication in 2003. Data for each individual includes demographic, Medicaid program category (ie, foster care, disabled), psychiatric diagnostic codes, and psychotropic medications by major therapeutic class.

    Subject
    Child, Foster
    Medicaid
    Psychotropic Drugs
    Timeframe
    2003

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