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Parents at the Center: Information Management in ADHD - Clinical Trial

The recruitment status of this study is unknown. The completion date has passed and the status has not been verified in more than two years.
Verified March 2009 by Boston Children’s Hospital.
Recruitment status was:  Active, not recruiting
National Library of Medicine (NLM)
Information provided by:
Boston Children’s Hospital Identifier:
First received: October 10, 2007
Last updated: March 26, 2009
Last verified: March 2009
Health literacy is an integral part of the pathway for the successful transfer of information between patients and providers. Parents of children with Attention Deficit/ Hyperactivity Disorder (ADHD) play an essential role in chronic care as they offer critical information to providers that drives appropriate education and disease management. We propose the development and evaluation of an electronic data entry tool that enables parents to communicate data essential to treatment of their children, regardless of their own literacy skills. The research plan addresses a question central to patient-centered information management: how does health literacy influence parents' report of data on ADHD and the process-level events that result from parent-provider communication? The following specific aims organize the clinical study: proposal: 1) To assess the effect of health literacy on successful completion of parent-reported ADHD health information in both paper-based and PCHR formats, and, 2): To determine the association between health literacy and process-level outcomes for ADHD that stem from parent-provider exchange of information. The formal evaluation will study a diverse cohort of parents in a randomized trial of data entry (paper versus PCHR) for ADHD-specific information. Primary care records for children of this cohort will be analyzed for the prior 12 month period. Both a retrospective examination of documented ADHD processes of care and a prospective evaluation of the utility of data from the PCHR will occur. Literacy level is a primary variable of interest throughout the evaluation.

Condition Intervention
Health Literacy Attention Deficit Disorder With Hyperactivity Computer Literacy Information Management Parents Other: Use of paper forms to write down information Other: Computer

Study Type: Observational
Study Design: Observational Model: Cohort
Time Perspective: Cross-Sectional
Official Title: Parents at the Center: Information Management in ADHD - Clinical Trial

Further study details as provided by Boston Children’s Hospital:

Estimated Enrollment: 224
Study Start Date: December 2007
Estimated Study Completion Date: June 2009
Primary Completion Date: March 2009 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
Parents of children with ADHD will be recruited from the greater Boston community. We are interested in enrollment of parents with a range of educational and technical backgrounds, and specifically will look to enroll parents who may not have much computer experience.
Other: Use of paper forms to write down information
Parents will be asked to write down information specific to their child's ADHD using paper forms.
Other: Computer
Parents will use a computer to complete data entry on information specific to their child's ADHD care


Ages Eligible for Study:   18 Years and older   (Adult, Senior)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
Parents of school-age children with ADHD

Inclusion Criteria:

  • Primary language of parent/guardian is English or Spanish
  • Parent/guardian reports that child has been diagnosed with ADHD
  • Current child age is between 5 years and 12 years
  • Child in question resides with the parental subject primarily
  • Parent/guardian reports that they are the primary caretaker of the child
  • Parent/guardian reports that they are the person who communicates with the primary care provider
  • Parent/guardian reports that child is currently taking medication for ADHD or has taken it within the last 3 months

Exclusion Criteria:

  • Parent reports that child in question has been diagnosed with mental retardation, autism, pervasive developmental disorder, Aspergers, or bipolar disorder
  Contacts and Locations
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Please refer to this study by its identifier: NCT00543257

United States, Massachusetts
Children's Hospital Boston
Boston, Massachusetts, United States, 02115
Sponsors and Collaborators
Boston Children’s Hospital
National Library of Medicine (NLM)
Principal Investigator: Stephen Porter, MD Boston Children’s Hospital
  More Information

Publications automatically indexed to this study by Identifier (NCT Number):
Responsible Party: Stephen C Porter/ Assistant Professor, Children's Hospital Boston Identifier: NCT00543257     History of Changes
Other Study ID Numbers: CHB-R01LM009256
Study First Received: October 10, 2007
Last Updated: March 26, 2009

Additional relevant MeSH terms:
Attention Deficit Disorder with Hyperactivity
Attention Deficit and Disruptive Behavior Disorders
Neurodevelopmental Disorders
Mental Disorders processed this record on September 21, 2017