Communication to Improve Shared Decision-Making in ADHD
Condition: Attention-Deficit/Hyperactivity Disorder
MeSH terms: Hyperkinesis; Attention Deficit Disorder with Hyperactivity
Study type: Interventional

Summary: 
      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.
    

Detailed description: 
      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.
    

Intervention name(s): Care Manager CM); ADHD Portal
Intervention type(s): Behavioral; Other
Intervention description(s): The CM was an individual responsible for communicating and coordinating ADHD care. The CM established rapport with families and communicated with them every 3 months or more frequently if needed to assess treatment use, identify new concerns, and help problem-solve. The CM also communicated with the patient's ADHD care team (pediatrician, teacher, mental health providers) to clarify family goals, communicate information, and coordinate treatment.; The ADHD portal was a web-based platform that permits access to parts of the hospital's electronic health record. The portal permits (1) capture and sharing of patient and family treatment preferences and goals, (2) monitoring of ADHD symptoms, treatment receipt, and side effects, and (3) assessing goal attainment. The system prompts for completion of periodic check-in surveys (bi-weekly to 3 months) with parents and teachers. Within the portal, preferences and goals for ADHD treatment were measured using the ADHD Preference Goal Instrument (PGI) (Fiks et al., 2012). Parents were encouraged to consult with their children when completing the tool.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: Single (Outcomes Assessor)
Primary purpose: Treatment
Keywords: Attention-Deficit/Hyperactivity Disorder; Shared-Decision Making; Care Manager; Children; Parents; Teachers