Attention-Deficit/Hyperactivity Disorder Clinical Trial
Official title:
Communication to Improve Shared Decision-Making in Attention-Deficit/Hyperactivity Disorder
The purpose of this study was to explore whether using an online patient portal plus a Care Manager is more effective than using an online portal alone in managing care for children with ADHD. Doctors at The Children's Hospital of Philadelphia currently use the online patient portal to help gather information from parents and teachers on ADHD symptoms, treatment, and medication side effects. The Care Manager is a person who meets with participants during the study to discuss their child's ADHD care. The Care Manager communicates with the child's doctor and teacher to communicate a parent's goals and preferences for their child's ADHD care.
Fragmentation in health care and poor communication across systems adversely impact
engagement and adherence to treatment by children with ADHD and their families. Fragmentation
of services for ADHD impairs communication and collaboration between families and primary
care providers, mental health providers, and educators, and leads to suboptimal outcomes for
children. Prior studies have documented that little communication and coordination exist
among providers across different systems despite calls for better system integration.
Fragmentation in communication between providers has the potential to impair shared
decision-making. To promote shared decision-making, we developed an electronic health record
(EHR)-linked portal to collect information from parents, teachers and clinicians on
children's ADHD symptoms and treatment-related preferences and goals. This has become
standard of care at our institution. We also developed and pilot tested a ADHD Care Manager
intervention which will be employed in this comparative effectiveness study.
303 participants were recruited from 11 primary care pediatric practices. Participants were
randomly assigned to either the EHR portal alone, or the EHR portal plus a Care Manager. For
those assigned to the EHR portal plus Care Manager, the Care Manager met with families at the
beginning of the study to confirm their treatment preferences and goals, provide additional
education on ADHD treatment, and distribute handouts on common concerns among ADHD patients
and families. The Care Manager contacted families every 3 months or more frequently if needed
by phone, email, or in-person to assess treatment use, identify new concerns, and assist
families with problem-solving. The Care Manager also communicated with primary care
clinicians, mental health providers, and teachers to clarify family treatment preferences and
goals and address emerging treatment issues. Participants completed surveys that assessed
ADHD symptoms, goal attainment, patient-reported outcomes, patient and family engagement, and
treatment initiation and adherence.
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