10 articles that changed how I think about ADHD care
This post is authored by Steph Peters, PsyD, VP of Behavioral Health at Clarity Pediatrics.
Understanding ADHD opportunities: my top articles
As a clinical psychologist and high-value care model designer, I spend my days at Clarity Pediatrics working with teams to design and implement healthcare experiences that work better than the status quo. Today, I want to share some of my favorite articles that have changed how I think about caring for individuals with ADHD so that care works better for everyone.
The articles below highlight both the problems that parents face when they are navigating ADHD care for their children and the opportunities that exist for healthcare systems to optimize care. There are several themes:
1) the challenges faced by children with ADHD and their families impact them across contexts,
2) the need for an interdisciplinary, connected, and collaborative approach to address the impact of ADHD in a lifelong way, and
3) the potential opportunities for innovation in ADHD care are significant — and urgently needed.
Personal favorite: understanding the ADHD caregiver journey
📖 Article: Six Stages of Engagement in ADHD Treatment Described by Diverse, Urban Parents
First author Andrea Spencer, MD and her team aim to examine the process through which families of children with ADHD get involved in ADHD treatment and identify ways to help them be more involved in their care. They interviewed forty-one parents of kids aged three to seventeen who were being treated for ADHD at a city “safety-net” hospital system and asked them about their diagnosis and treatment experiences, their communities’ views about ADHD, and other things that may impact their involvement with care. After reviewing transcripts, the researchers uncovered common themes:
“Parents described 6 stages to the process of engaging in care for their child’s ADHD, which unfolded like a developmental process: (1) normalization and hesitation, (2) fear and stigmatization, (3) action and advocacy, (4) communication and navigation, (5) care and validation, and (6) preparation and transition. Barriers often occurred at points of stage mismatch between parents and providers and/or systems. Difficulty resolving an earlier stage interfered with the progression through subsequent stages.”
I often return to this resource, filled with rich, qualitative perspectives and firsthand parent quotes describing ADHD care journey stages. The article has implications for how we measure engagement (spoiler alert: it is not a binary “yes” engaged or “no” engaged) and how we can support families throughout their care milestones.
Redefining ADHD care
📖 Article: Future Directions for Psychosocial Interventions for Children and Adolescents with ADHD
The authors of this work describe the biggest systemic opportunities to transition pediatric ADHD care from a reactive, transactional, episodic model towards a chronic care, patient-centered approach. They focus on six main ideas:
“(1) identifying and leveraging mechanisms of change,
(2) examining impact of youth development on treatment mechanisms and outcomes, and
(3) designing intervention research in the context of a life course model.”
…
“(4) enhance access to evidence-based treatment,
(5) optimize implementation fidelity, and
(6) examine and optimize costs and cost-effectiveness of psychosocial interventions.”
Although all of these target areas are compelling and worth exploring, the combination of them would be powerful. Imagine a system that proactively identifies patients in need at the population level and increases access to evidence based and effective care. I found the life course model particularly compelling. As ADHD is often a lifelong condition, considering ADHD care and treatment in the context of someone having ADHD their whole life is essential. The authors wrote about the life course model in another paper, which describes how treatment recommendations should consider the life long nature of the condition.
📖 Article: Skills Versus Pills: Psychosocial Treatments for ADHD in Childhood and Adolescence
This short and sweet article describes the rationale for including behavioral approaches as part of a child’s ADHD treatment plan. I especially appreciate the deep-dive into the research behind the specific treatments, including Behavioral Parent Training, Behavioral Classroom Management, Behavioral Peer Interventions, and Organizational Skills Training. I reference it often when parents or pediatricians ask about the effectiveness or recommendations around certain psychosocial approaches. As this paper came out in 2016, Dr. Gonzalez will be due soon for a Skills Versus Pills update paper. She herself has contributed to the literature base on parent training for teen populations since her Skills versus Pills paper came out, including her work that became available online this month piloting a four-session parent training tele-group for adolescent ADHD.
We should not accept the ADHD status quo
One of the signs of opportunity for healthcare design improvement is diagnosis and treatment practice variability across geographies. If we were seeing evidence-based guideline driven care occurring at scale, there would be small, if any, regional variations in any specific condition. That is not occurring with ADHD. The authors take us through a tour of the geographic distribution of ADHD diagnosis and treatment and highlight:
“The nationwide childhood prevalence of ADHD is 8.7%, and 62.1% of diagnosed children are taking medication. Louisiana (15.7%) has the highest percentage of children diagnosed with ADHD and California (5.6%) has the lowest, followed by Nevada (5.9%).”
When it comes to treatment, the variance is even more profound, ranging from “32.2% to 76.3% of children taking ADHD medication among those diagnosed,” depending on the geography.
Anytime you see large regional differences in care you can assume there is a significant opportunity for enhancing standardized guideline-driven care. This paper highlighted to me the massive opportunity for system-wide care opportunities for ADHD care.
In addition to geographical differences, the authors also explored correlations between ADHD diagnosis rates and SES factors.
“Multiple correspondence analysis (MCA, n = 51,939) examining 30 factors highlights four areas of interest at the national and state level: race/ethnicity, financial status, family structure, and neighborhood characteristics.”
📖 Article: Many Medicaid-enrolled children who were treated for ADHD did not receive recommended followup care
This report from the U.S. Department of Health and Human Services Office of Inspector General explored frequency of guideline-driven care for children with medicaid. Unfortunately:
“Over 500,000 Medicaid-enrolled children who were newly prescribed an ADHD medication and over 3,500 children who were hospitalized with a primary diagnosis of ADHD did not receive followup care within the timeframes outlined in the national quality measures. Additionally, over 54,000 children did not receive any behavioral therapy as recommended by professional guidelines.”
…
“Fifty-nine percent of Medicaid-enrolled children who were newly prescribed an ADHD medication did not receive followup care within 30 days.”
ADHD is one of the most common chronic childhood conditions, we spend a significant amount on ADHD care as a country, and we have guidelines from societies like American Academy of Pediatrics and the Society for Developmental & Behavioral Pediatrics. Despite this, we are performing suboptimally when it comes to connecting families to guideline-recommended care.
The impactful reads on ADHD you shouldn’t miss
Now that we have had our tour of what is broken in ADHD care, it is time for a bright spot.
The authors of this work completed a cost-analysis of the treatment recommendations for ADHD in a sequential way:
“Beginning treatment with a low-intensity regimen of behavior modification (group parent training) was less costly for a school-year of treatment ($961) than beginning treatment with a low dose of stimulant medication ($1689), regardless of whether the initial treatment was intensified with a higher “dose” or if the other modality was added.”
Although the literature on treatment sequencing is emerging, I am very excited for the future when we may be able to customize treatment plans for ADHD to maximize cost-effectiveness and treatment impact.
📖 Article: Toward Effective Utilization of the Pediatric Emergency Department: The Case of ADHD
This article explored ADHD-related emergency department (ED) visits compared with other psychiatric visits for children who use Medicaid. One of the interesting areas in scope for this article was whether any ED visits would have been considered “avoidable.” This has implications for high value care design models where design builds for the best outcomes with the least spending, for example, programs that are part of a pediatric ACO, or programs offered by payers.
“Approximately 24% of all ED visits were for ADHD and about 30% of these visits may have been avoidable. ADHD-related ED visits comprise a sizable proportion of all ED visits.”
For those of us building for value, the notion that “30% may have been avoidable” when talking about the ED should get the healthcare redesign wheels turning.
Most meta-paper: an ADHD paper about ADHD papers
📖 Article: Half a century of research on Attention-Deficit/Hyperactivity Disorder: A scientometric study
Not familiar with the term scientometric? I wasn’t before I read this article either. In short, a scientometric approach involves summarizing large amounts of bibliometric data to be able to see trends in research areas. This work describes the scientometric exploration of 28,381 publications on ADHD. I appreciate this work for giving me a bird’s eye view into the amazing science of ADHD. A few gems:
“Turning point papers,” or papers that changed the trajectory of ADHD research:
“The top five papers, with the strongest modularity change rate (which measures the relative structural change due to the information from the published paper with reference to a baseline network) (Chen, 2012) were: the Faraone et al., 2021, World Federation of ADHD International Consensus Statement (Faraone et al., 2021); the Brikell and colleagues review on ADHD genetic studies (Brikell et al., 2021); the Luderer and colleague review on alcohol use disorders and ADHD (Luderer et al., 2021); the paper from the ADHD European Guidelines Group on the management of ADHD (Coghill et al., 2021); and the Zhang and colleagues study on the links between ADHD and Alzheimer disease (Zhang et al., 2021).
Recent research trends:
“When zooming more closely on the past five years, interesting clusters emerged, including lines of research on: 1) the relationship between ADHD and autism, likely strengthened by the removal, by the DSM-5, of the veto of co-diagnosing ADHD and autism; 2) the link between ADHD and obesity, reflecting the awareness of significant links between mental and physical conditions (Cortese et al., 2020); 3) gut-microbiome, in line with a recent research trend across several areas in psychiatry (Cryan and de Wit, 2019); 4) a controversial topic, i.e., the possible adult onset of ADHD, which some researchers posit is accounted for by a late manifestation symptoms that were present in childhood but were not impairing due to effective scaffolding (Riglin et al., 2022).
Just published: what I read recently
📖 Article: A systematic review on the application of machine learning models in psychometric questionnaires for the diagnosis of attention deficit hyperactivity disorder, online February 20, 2024, ahead of print
One of the biggest challenges with ADHD is accurate, consistent and early diagnosis of ADHD. This systematic review explores the potential of Machine Learning (ML) to help increase diagnostic accuracy by using information better from rating scales:
“The information presented in Table 1 shows that ML applied on questionnaires and scales may be useful in improving the accuracy of ADHD diagnosis. It can be seen that in most cases, the accuracy of the different ML methods improves the base rates (Bledsoe et al., 2020; Chen et al., 2023; Christiansen et al., 2020; Duda et al., 2017; Goh et al., 2023; Haque et al., 2023; S. Kim et al., 2021; Tachmazidis et al., 2020). For example, the study by Duda et al. (2017) had 41.2% ADHD cases, and they report an accuracy of 82%.
Furthermore, studies presenting the sensitivity and specificity scores of ML models are comparable and sometimes even superior to the sensitivity and specificity provided by traditional diagnostic questionnaires. Bledsoe et al. (2020), Grazioli et al. (2023) and Kim et al. (2023) have studies applying ML models with sensitivity and specificity ranges from 50% to 100%, whereas Taylor et al. (2011) show in their systematic review that the average sensitivities and specificities of the psychometric questionnaires usually range from 70% to 90%.”
Reflecting on ADHD: articles that changed how I think about ADHD care
Overall, these articles have not only transformed my understanding of ADHD care but have also inspired me to seek new approaches to improve the lives of individuals with ADHD and their families. I hope the readers of this post find them as useful as I did. I’d love to hear thoughts (or other suggestions for articles) in the comments section. Which one stands out to you?
