Parents at the Center: Information Management in ADHD - Clinical Trial
| Status: | Completed |
|---|---|
| Conditions: | Psychiatric |
| Therapuetic Areas: | Psychiatry / Psychology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 10/8/2017 |
| Start Date: | December 2007 |
| End Date: | June 2014 |
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.
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.
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
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