Results Summary
What was the research about?
Children with attention-deficit/hyperactivity disorder, or ADHD, may struggle to stay focused, pay attention, and control behavior. Treatment for ADHD works best if doctors, teachers, and parents share information and work together.
In this study, the research team compared two ways to coordinate care for children with ADHD. The team put families in one of two groups. Both groups used an online patient portal for parents to share information with doctors and teachers. In one of the groups, parents received support from a care manager in addition to using the portal.
What were the results?
The two groups didn’t differ in
- Parent report of child’s ADHD symptoms
- Parent rating of whether ADHD treatment met their family’s goals
- Parent and child report of how the child was doing in school and in their relationships with peers
- Child report of family and teacher relationships
Across both groups of children, 68 percent had a parent and 30 percent had a teacher use the portal to report symptoms.
Who was in the study?
The study included 303 children with ADHD and their parents. Children received care from 1 of 11 practices in a health system in Philadelphia. Of these children, 40 percent were White, 46 percent were Black, 9 percent were another race, and 5 percent were Hispanic. The average age was 9, and 69 percent were boys.
What did the research team do?
The research team assigned families to one of two groups by chance. Parents in both groups used the portal to privately share their treatment goals with doctors and teachers. Doctors used the portal to collect information about ADHD symptoms and share treatment information with parents and teachers.
In one group, care managers contacted each family every three months to provide education about ADHD treatments, discuss concerns, and solve problems related to care and treatment. Care managers contacted families by email, text, and phone. They also reached out to children’s doctors and teachers every three months to help coordinate care.
Parents and children eight and older completed surveys in person at the start of the study and then online three, six, and nine months later.
Clinicians, teachers, and parents of children with ADHD gave input throughout the study.
What were the limits of the study?
This study took place at one health system in one city. Results may differ in other locations. Parents reported that they didn’t feel connected to the care managers because meetings weren’t in person and were spread out over time. Also, many parents and teachers in both groups didn’t use the portal often. These issues may have affected study results.
Future research could explore how to increase parent and teacher use of the portal and how care managers can better connect with families.
How can people use the results?
Health systems can use the results when considering how to improve care coordination among doctors, teachers, and parents of children with ADHD.
Professional Abstract
Objective
To compare the effectiveness of using an electronic patient portal plus a care manager versus a patient portal alone for coordinating care of children with attention-deficit/hyperactivity disorder (ADHD) to improve symptoms
Study Design
| Design Element | Description |
|---|---|
| Design | Randomized controlled trial |
| Population | 303 children ages 5–12 with an ADHD diagnosis and their families |
| Interventions/ Comparators |
|
| Outcomes |
Primary: parent report of ADHD symptoms Secondary: parent rating of whether ADHD treatment met their goals; patient-reported outcome measures: parent and child report of school performance, student engagement, and relationships with peers; child report of family and teacher relationships |
| Timeframe | 9-month follow-up for primary outcome |
This randomized controlled trial compared the effectiveness of using an electronic patient portal paired with a care manager versus using the patient portal alone to coordinate care focused on reducing ADHD symptoms and improving education and relationship outcomes for children with ADHD.
The research team randomly assigned families of children with ADHD to one of the two interventions. In both interventions, clinicians used an electronic portal to gather information from parents and teachers about ADHD symptoms, treatment preferences and goals, and medication side effects. In addition, parents could consent to use the portal to share their child’s ADHD symptoms, medication side effects, and goals for ADHD treatment with teachers and view teacher responses. In one of the two interventions, care managers helped facilitate communication and care coordination between parents, clinicians, and teachers. The care managers reached out to families in this group at least once every three months by telephone, text, or email to provide education about ADHD treatment, discuss any concerns, and address problems related to care and treatment.
The study included 303 children with ADHD and their parents. Children received primary care from 1 of 11 pediatric practices in an integrated pediatric health system in metropolitan Philadelphia. Of these patients, 40% were White, 46% were Black, 9% were another race, and 5% were Hispanic. The average age of children was 9, and 69% were male.
Parents and children over 8 years of age completed study surveys in person at baseline and then online three, six, and nine months later.
Clinicians, teachers, and parents of children with ADHD provided feedback to the research team throughout the study.
Results
Among participants in both interventions, 68% had a parent and 30% had a teacher access the portal and fill out symptom information. The two interventions did not differ significantly on any study outcomes, including ADHD symptoms, goal attainment, and patient-reported outcome measures.
Limitations
This study took place in a single geographic area and integrated health system. Results may differ for other areas and health systems. Parents reported that they did not feel engaged with the care managers because the contact was infrequent and not face-to-face. This lack of engagement may have limited the impact of the care managers. Family and teacher engagement with the portal was modest in both groups, which may have limited the impact of the portal overall.
Conclusions and Relevance
In this study, supplementing a patient portal with care management did not improve outcomes among children with ADHD compared with providing a patient portal alone.
Future Research Needs
Future studies could examine how to increase use of portals by family members and teachers, and how to improve care manager engagement with families.
Final Research Report
View this project's final research report.
Journal Citations
Results of This Project
Related Journal Citations
Peer-Review Summary
Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.
The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments.
Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:
- Commenting on the relatively low rate of use of the electronic portal by parents and teachers, the reviewers suggested that focus groups might help elicit ideas for how to increase participation. The researchers replied that focus groups were beyond the scope of the current project but noted that they conducted interviews with 19 parents in the intervention arm.
- The reviewers asked whether the researchers were surprised to find that only 10 percent of children identified with attention-deficit/hyperactivity disorder (ADHD) ended up being eligible for the study and whether it might have been helpful to expand the intervention to a wider group, such as patients who were undergoing treatment by specialists. The researchers explained that they excluded most of the children who were not considered eligible for the study because the children’s primary care provider was not actively managing their ADHD in the prior year. This included patients who were managing their ADHD with outside providers or who had no ADHD care in the prior year. Another subset of patients was not eligible because they had one of a number of co-occurring conditions, such as autism. A small portion were not in the target age range of 5-12 years old.
- The reviewers asked for more discussion on the researchers’ speculations regarding whether care managers’ difficulty engaging some families in the intervention was related to the method of communication, i.e., electronic or in-person. The researchers expanded on this discussion, adding previous research describing the benefit of face-to-face sessions.
- The reviewers wondered what, if any, harms were associated with the intervention. The researchers said the harms they disclosed in their consent agreement were risk of exposure of confidential information and potential discomfort answering questions. The researchers said participants did not report experiencing either harm.
- The reviewers commented that the study description seemed to indicate that the communication interventions in this study would improve shared decision making, but there was little discussion in the report about shared decision making. In response, the researchers added content regarding how the tiered communication intervention would likely facilitate shared decision making, but they admitted that the study did not include a measure of the quality of shared decision making.