Young Children At Risk for ADHD: The community feedback period for this project began on 9/12/18 and will end on 11/11/2018

 

What is the problem that needs to be addressed? Please describe how it is related to mental health.

Attention Deficit Hyperactivity Disorder (ADHD) is the most prevalent childhood psychiatric condition, affecting nearly 1 in 10 children in the United States, with a profound public health, personal, and family impact. Recent estimates put the annual cost of ADHD as high as $266 billion, much of which is lost productivity and income for adults with ADHD and parents of children with ADHD. ADHD requires comprehensive treatment, including child interventions (e.g., behavioral treatment, medication), parent training, and educational planning. Because ADHD is chronic and lifelong, maintenance, which requires substantial self-regulation, is needed to support initial treatment gains. Our goal is to enhance self-regulation and self-efficacy in parents by prompting them to implement therapeutic strategies and to reflect on their progress. Traditional methods of mental health intervention cannot address this need. Group parent training loses effectiveness over time, paper and electronic parenting materials are likely to be discarded, and in-person therapy with a clinician does not scale over the long-term for every family and is very costly and places a high burden on the mental health system.  When diagnosed or undiagnosed behavior problems in children are considered alongside ADHD, the problem is even more daunting. Innovative mental health approaches are desperately needed.

 

Why is this a concern for Orange County? What can Orange County and other counties learn from this project?

Given the chronic and pervasive impairments associated with Attention Deficit Hyperactivity Disorder (ADHD) and related behavior disorders, high rates of child comorbidity, and heightened problems in social interactions and relationships, children with ADHD and behavior problems are at risk for poor outcomes and require intensive interventions. Among Latino and other minority underserved children with ADHD, there are well documented health disparities and unmet clinical needs, suggesting that their risk of poor outcomes may be even more concerning. Culturally relevant and easily accessible interventions are urgently needed.

Self-regulation is a robust predictor of positive outcomes in adulthood, and early childhood is a critical period for developing self-regulation. Young children (ages 3-7) with poor self-regulatory skills have been described as “at-risk” for ADHD. Many parent training interventions across the United States and world have attempted to address the need for culturally relevant and accessible interventions to build self-regulation during a “critical period” of development. For the last fifteen years, we have delivered one of these programs in Southern California. The success of these mental health interventions in improving child self-regulation, improving parenting skills, reducing parenting stress, and reducing barriers to service for underserved families have all been documented in our prior research. However, despite initial success, like most other mental health interventions, long-term maintenance is challenging, gains are lost over time, and new solutions are needed. We are now developing and testing such solutions.

 

What is currently being done to resolve this problem in our county and throughout the United States? If applicable: Is it working; why or why not?

Although health IT applications are growing across the United States, this work has not yet addressed behavioral disorders and ADHD in young children, particularly among underserved and minority children.  Our research builds on the growing body of work using mobile platforms for healthcare interventions. For example, text messaging has been used to support smoking cessation programs, cognitive behavioral therapy, and adherence to appointment schedules. More advanced applications allow clinicians to monitor adherence to behavioral protocols, monitor and detect cardiac events, and support patients in monitoring their own physical activity levels. These approaches are particularly applicable for chronic health conditions, in which people are highly motivated to engage with a variety of therapeutic options. Early research in the use of smartphones in mental health is also promising. Smartphones have been used to support real-time self-reporting of mood states. Additionally, use of mobile phones may enhance communication when patients find the topics too difficult to discuss in person. Data collected via mobile phones can be visualized and paired with external data, such as location, to raise awareness of emotional states in individuals and encourage adherence to prescribed treatment. Our research team recently received the first award from the federal Agency for Healthcare Research and Quality focused on the development of health IT solutions for teenagers with ADHD and behavioral disorders. No one has yet applied such technology to parents of young children at risk for ADHD and behavioral disorders, in spite of the fact that early childhood is such a critical time for the development of self-regulation.

 

What is new or different about this project idea? Please describe how this differs from what is already being done (Question 6). Please list any research that was done on this topic.

Wearable computing and the Internet of Things have made truly low-cost, highly customized innovative interventions possible and are expected to take giant leaps in the next ten years. These approaches provide innovative health IT mechanisms for delivering long-term follow-up interventions that enhance and reinforce treatment, improving outcomes and reducing the burden on public mental health systems. Our multidisciplinary, clinical research team has extensive experience developing ADHD, behavior disorder, and technological interventions. Here we propose to develop and test a novel technology that will use a wearable and connected system that combines a fitness and health tracker, mobile phone app, and web portal with an online community, which can be used to deliver intervention and improve maintenance over time for parents of children at risk for ADHD or related behavioral disorders. Our multilingual team is able to develop and test the intervention in both English and Spanish, and future efforts could translate materials into other languages as needed.

Families of young children at risk for ADHD have complex needs. Despite improvement in outcomes following family interventions, long-term maintenance is a challenge unmet by traditional medical approaches. The key innovation in our research is use of novel but low-cost and highly available technologies to create a sustainable solution for supporting long-term maintenance. This research will fill a major gap in the translation of early prevention or treatment investments and gains into long-term, sustainable outcomes.

Culturally Relevant Family Interventions. Previous efforts have not yet considered the context of culturally relevant family interventions, the focus of our work. While enrolled in parent training, parents are instructed to practice what they learn outside of the therapeutic session. Thus, our system, which is geared towards direct use by parents, must also ensure that parents’ needs are addressed. To accomplish these goals, we will incorporate feedback from parents and clinicians in our design and ensure that our health IT intervention delivers accessible health and behavioral information, prompts, and feedback to improve response to treatment.

Technological Innovation.  Our IT solution is innovative in three key ways. (1) Although other projects have used self-reported data collection through ecological momentary assessment or via video, email, and SMS capabilities of a smartphone, we will use  automatically recorded data from a variety of sensors visualized alongside self-reported data. These data will be visualized with self-report data to enhance parents’ abilities to reflect on their experiences. (2) Our solution leverages the full range of wearable technology and smartphone (Android and iOS) capabilities to provide interventions that are more interactive and engaging than the simple text-based messaging that has dominated previous research. (3) The assemblage of commodity off the shelf hardware in new and innovative ways to create a unique experience for parents will ensure the adoption and sustainability of our approach.

 

What is the project idea? Please describe how this project will operate.

To address the complex behavioral and mental health needs of parents coping with a child’s poor self-regulation and to contribute to scientific and broader clinical knowledge about improving treatment adherence and outcomes, our project is designed to adapt a technological intervention to an unmet clinical need among underserved families. Our first aim is to conduct design workshops over six weeks with four cohorts, each consisting of 4 to 6 parents and clinicians. We will recruit a diverse sample of affected parents and community clinicians to participate in focus group research addressing design elements to ensure that robust feedback from potential users is incorporated from the start.  With cooperative design, we will finalize the requirements, user experience, and details of the hardware and software to inform the design and functionality of the IT solution. We will create a wearable, context-aware system for supporting long-term change that will include three core modules: educational information, data collection, and data visualization. Our second aim is to evaluate the effectiveness of the IT solution. We will recruit six cohorts, each consisting of 20 families (N=120) of children ages 3-7 who are at-risk for ADHD (i.e., meet criteria for poor attention and self-regulation). All families will receive parent group intervention; half will be randomized to receive standard in-person group intervention (comparison group representing current approaches), and half will participate in intervention supplemented with our IT solution. Participants will be followed for one year to evaluate the impact of the health IT solution on treatment gains. To measure psychological (e.g., parental stress, child self-regulation) and biological (salivary cortisol and alpha-amylase, biomarkers of parental stress) outcomes we will use a mixed methods evaluation at four time points with all families: (1) pre-intervention, (2) after completion of the 10 week in-person intervention, (3) six months after completion of the in-person intervention, and (4) one year after completion of the in-person intervention. This proposed project could provide important contributions to field of mental health, both in Orange County and beyond, as it will provide a model for incorporating innovate IT solutions to improve mental health outcomes.

 

Additional Information:

Respondent skipped this question

August 28, 2018

19 comments

How is confidentiality ensured for these children and families?

The study for this proposed project will be reviewed by a university Institutional Review Board (IRB), which will evaluate the project to ensure that all necessary protections for privacy and security are included in the plan. Participants will need to complete consent forms (in their primary language) to participate. IRB approved consent forms will describe potential risks and the responsibility of the team to minimize that risk. Potential risks to privacy include an individual’s loss of their phone and people other than the participants using the phone. To protect against breaches of privacy that may occur if someone’s phone is lost or used by someone other than the participant, we will require that participants set up and use the existing user password system on their smartphones for the duration of the study, and the Health IT app will require a secure log-in as many banking apps require. We will encrypt the data stored on the phones and in transmission to our servers. We will use existing secure cloud services, such as Amazon cloud services, to ensure the data are encrypted in both directions of data transmission (upload and download). Additionally, we will enable multi-factor authentication, which will add an interaction step but provide the highest possible level of security for data stored in the cloud. Our proposed practices are more secure and privacy-preserving than existing HIPAA regulations and in line with the new European GDPR requirements, widely recognized as the most secure and comprehensive data privacy requirements presently in existence.

Which underserved groups in OC will be included in your six cohorts?

In the early phases of this project, we will offer services in both English and Spanish; we hope to add additional languages once the project is launched. However, we currently have all materials ready to implement in English and Spanish, and we have bilingual (English/Spanish) staff. Thus, initially, we would plan to recruit families in Orange County who are interested in participating in intervention in either English or Spanish groups. We have partnerships with pediatricians serving underserved Spanish-speaking families and anticipate that the vast majority of participants will be lower-income families (e.g., based on their child’s enrollment in MediCal).

What are the long-term, sustainable outcomes you are hoping to find?

Long-term maintenance of mental health intervention gains has been challenging for many reasons, including accessibility, cost, time, and follow-through with treatment recommendations. Innovative technologies can bridge this gap. Little research has characterized how parents conceive of and apply lessons from treatment long-term nor how they might best be prompted to manage their child’s behaviors over the long term. Research has not yet addressed how mobile and wearable technology needs and practices differ for Latino and other underserved families and how this might influence the design and development of culturally relevant personal health technologies. Better modeling of these constructs will bolster the design of self-management systems. Our goal is to study how new technologies can be used to enhance and maintain initial intervention gains and to provide best practices for collecting, reflecting, and intervening on personal health information related to behavioral challenges in children. These gains may be felt even more profoundly by those most under-served by the existing healthcare system; low-income, youth, and minority status are all indicators of a greater likelihood of use of mobile phones for Internet access than more traditional methods. In these communities, smartphones have been widely adapted, and a recent national survey identified Latino ethnicity as a predictor of a greater likelihood of using smartphone health apps. The intervention we propose to develop – using collaborative design with parents and their health care providers – is likely to provide intervention in a highly accessible, low cost format that is already widely appealing to parents in the United States. The health IT intervention would reinforce initial treatment gains, provide daily prompts, provide easy and quick access to behavioral health information, provide opportunities for goal setting and evaluation, and provide opportunities for reflection and self-evaluation that will help parents increase their confidence in their ability to guide their children in a positive way. The system would remain on their phones after the end of the study, allowing them to continue to use it for years to come. To ensure the adoption and sustainability of our approach, we will release a version of the software that does not need clinician support to the public through the Google Marketplace (as we have done gratis for past projects) and release the source code to researchers interested in building on this work or creating personal health technologies using similar hardware platforms. This will allow others to further update the intervention and help expand the impact and reach of the initial intervention.

As a parent of two children with ADHD inattentive type and Autism, I believe this program would be an effective way to train parents to help their children. The earlier parents and kids can get quality help and training the better!! I would love to use this tool!

Francis M. Crinella, Ph.D.

I’ve been working with children with ADHD for 52 years, and have witnessed the heartaches and disappointments associated with treating them with psychotropic drugs, restrictive diets, brain stimulation schemes, and the like. Kimberley’s proposal is among the most hopeful, forward-looking initiatives that I’ve seen. It makes a lot of sense from my understanding of the nature of ADHD and the types of interventions that are likely to be effective going forward. I look forward to its implementation.

Francis M. Crinella, Ph.D.
Clinical Professor of Pediatrics, Psychiatry & Human Behavior, and Physical Medicine & Rehabilitation
Department of Pediatrics
School of Medicine
University of California, Irvine

As a clinical professional who works with children and families, I can attest to the significant need for early intervention for children diagnosed with ADHD. Research shows the detrimental impact of untreated ADHD to children, as well as their loved ones. I look forward to the implementation of such an innovative intervention!

As a parent of a child with ADHD and Austim we have tried many medicines, diets, therapies etc. I would love the opportunity to use this tool to further help my child and our family. I believe this tool will be a great addition to all the other things we are currently doing with my son.

Thank you so much for the feedback, Maggie. We would love to have the opportunity to build more supportive clinical tools for families like yours.

I work with children and adolescents with ADHD. This would be incredibly helpful! Self-regulation is an area that children with ADHD struggle with especially in kids with ODD and other behavior problems. I am excited to see the results of this program in terms of improvement in self regulation!

Michele Nelson MD
Child and Adolescent Psychiatrist
Assistant Clinical Professor
University of California, Riverside

This is exciting research, and as an adult psychiatrist who treats patients with ADHD, I look forward to seeing implementation and results. Intervening with children would hopefully change their trajectory.

Jeannie Lochhead, MD
Assistant Clinical Professor
UCR

This sounds promising! I’d like to know how much effort will be required of the participating parent. Is this a program for which the parents will need to invest large portions of their time in the day? For example, if the participating parent and child have to divert an hour of their time on a daily basis from other priorities that may be asking too much. I would want this technology to seemlessly integrate into my daily activities, not be a disruptor.

One last thing, having a visual or mockup of how the technology and program would work would be very helpful in wrapping my head around this concept.

During the development of the application/technology, we will involve parents in design focus groups to address exactly the issue you raise. The goal will be for the design and intervention to be something that they readily adopt into their daily patterns, that requires little sustained input, but provides intervention, resources, and support when it is most needed. The application/technology would then be piloted with a group of parents to test its efficacy and to work out any issues that come up. After this second phase of testing and development, we would release it to the community for more widespread use.

The idea is terrific. As an educational therapist, I would love to see this information eventually shared with the school environment, so that the school personnel and faculty would have a “heads-up” as to any antecedent that might impact the school day. Sounds like this might be a way to accomplish this, both with physical and behavioral data.
Karen Lerner

We envision a tool that would allow parents to choose to share limited information (only what they choose to share) with teachers, pediatricians, and other clinicians. Parents could choose not to share anything at all; or they could choose to share information in a way that it could be transmitted to teachers or even into electronic medical records. For example, they could send their pediatricians updated behavior ratings so that progress could be more closely monitored in between regular well child visits. Parents would decide what to share and with whom to share it.

This is an exciting project with potential impact for countless children! All children can benefit from improved self regulation skills, especially children with ADHD. I look forward to seeing the results of this project and how it will help kids feel and do better.

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