[Cause Exploration Prizes] Expand Access to ADHD Treatment and Fund more Research

This essay was submitted to Open Philanthropy’s Cause Exploration Prizes contest

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Introduction

Attention Deficit Hyperactivity Disorder (ADHD) is a neuropsychiatric disorder that 5% to 10% of all people have.11,13, 53 It has been observed in all regions and cultures.

ADHD is associated with anatomical differences in brain structure. Though, you can’t see the anatomical differences with the eye you can still measure them empirically with a technology called neuroimaging. Scientists have found strong evidence for a consistent anatomical difference in the brains of people with ADHD.

In 3242 children scientists found that children with ADHD had slightly smaller subcortical regions42. In 607 people scientists found consistent and replicable under-activation in regions of the brain that are connected to inhibitory control39. Other scientists found the same under activation in two more analyses which covered 116164 and 2005 participants respectively80.

Finally, in another paper scientists found that in 947 people, they found consistent white matter differences. These differences suggest that connections between regions that are involved in attention and perception are poorer in people with ADHD.

These differences can result in chronic cognitive and behavioral impairments. This includes impairments in inhibition, attention and self regulation.

ADHD means that you have poor executive functions. Executive functions are higher-order cognitive processes that underlie goal-directed behavior which have a profound influence on all aspects of daily living, especially with respect to a person’s ability to learn, problem-solve, plan, and perform everyday tasks and activities7. There are three executive functions: inhibitory control, working memory, and cognitive flexibility3.

Inhibitory self-control in childhood was predictive of physical health, financial stability, decreased substance use, and fewer criminal offenses in adolescence and early adulthood96.

Better cognitive flexibility has been shown to be related to higher self-esteem and self-efficacy in a sample of Asian-American College students23.

These impairments result in poor school and work performance, impaired interpersonal skills, and other problems such as poor financial management, trouble organizing or cleaning ones home or a chaotic routine9.

Because of their impairments, people with ADHD fail and underachieve a lot. Plus, they are likely to get a lot of negative feedback from peers and authority figures like parents and teachers. As a result of these negative experiences, people with ADHD can have negative outlooks on themselves and the world. These negative perspectives make it difficult for them to consistently build and use strategies that compensate for the ADHD53.

All in all, these impairments result in a poor quality of life. One meta-analysis that looked at 5000 youths and their parents showed that the quality of life for youths with ADHD was lower than their peers. The youths with ADHD had strong impairments in emotional and social functioning. Unfortunately, as they aged, their quality of life got worse104.

Parents raising kids with ADHD struggle too. In one meta analysis of 647 families, those who are raising one kid with ADHD reported a medium sized deficit in quality of life29.

Importance

Treating ADHD is important because it’s prevalent in populations across the world including countries with poor health systems. Additionally, people with ADHD face a lot of social rejection and loneliness. They have higher levels of injuries due to accidents. They have poorer performance in academics. In addition, people with untreated ADHD are more likely to commit crimes. Finally, it has been shown that untreated ADHD is causing an economic burden to society in countries all over the world.

ADHD is a Worldwide Public Health Burden.

Improving ADHD treatment is important for populations across the world. ADHD is a public health burden all over the world. A study of female school children in Saudi Arabia found a prevalence rate of 3.5% in girls45. In a study done on 1775 students in Qatar, scientists found a prevalence rate of 13% in boys and 5.4% in girls. The study showed that adolescents with ADHD had more academic and social difficulties than their non-ADHD peers51. The boys had more academic difficulties, while girls had more social difficulties.

A systematic review of studies done in Africa showed that there was a high prevalence rate of 7.47% of ADHD8. The authors said “ Greater attention needs to be paid to the prevention and treatment of ADHD.” A study of 332 Ugandan children showed that the prevalence rate of ADHD in the sample was 11%101. One study of Nigerian primary school children showed that the prevalence of ADHD was 8.7% in their sample1. Having ADHD made it more likely to have comorbidities like ODD, and anxiety. Another study conducted in Nigeria that had a sample size of 273 children showed an ADHD prevalence rate of 3.4%21. A study of children in the Khartoum State in Sudan showed a prevalence rate of 9.4%82.

A study of 525 students in urban Hue City, Vietnam showed that the prevalence of ADHD is 4.6% in that sample40. In a study of 7118 Thai students, researchers found an ADHD prevalence rate of 5.8%84.

On an individual level, treating ADHD is important because, tragically, the common experience of ADHD is profound disconnection and loneliness. Additionally, it leads to economic problems, unemployment, underemployment and underachievement12, 78, 86.

A meta-analysis found that children with ADHD had medium to large impairments in socializing with peers. They were less likable, and popular. They had less friendships, and faced more rejection. This was shown in 61 studies with over 24,000 children. They had impairments in skills like sharing, cooperating, turn-taking, and reciprocity. This was shown in 68 studies with 148,000 children. They had more trouble with social information processing such as recognizing social cues, identifying problems, generating solutions, and avoiding biases.This was shown in 23 studies with over 3,750 children106.

One study found that children with ADHD are 2.4 times more likely to engage in bullying36. This was found in a sample of 53000 U.S children. Another study confirmed this finding. It found that children with ADHD were 2.8 times more likely to engage in bullying96. This was found in a sample of 64,000 children. Another study of 287 adolescents with ADHD in Taiwan showed that ADHD was related to bullying victimization and perpetration. The prevalence rates of the pure victims, pure perpetrators, and victim-perpetrators were 14.6%, 8.4%, and 5.6%22.

The problems with socializing start in Primary school. There the child with ADHD starts to fall behind as their classmates start to develop the skills and maturity that enable them to learn successfully in school. Sometimes a sensitive teacher adapts the classroom to enable a child with ADHD to succeed. But, more often the child frequently experiences academic failure, rejection by peers, and low self esteem.

Parents are often over burdened with little help. The ADHD child will have difficulties at home or on outings. Parents may find that family members refuse to care for the child, or invite them to parties or out to play. The parent can find themselves stretched thin, and have little time to themselves because whenever the child is awake they have to be watching them38.

Having ADHD also means that you are more likely to get injured from accidents. One meta-analysis found that those with ADHD had a 40–50 % greater risk of unintentional injuries. This analysis covered 32 studies and 4 million people67.

A study of 50,000 youths with ADHD in Taiwan showed that having ADHD was associated with a more than three quarters greater likelihood of burn injury103.

A meta-analysis showed that those with ADHD were 23% more likely to be in car accidents. This was shown in 16 studies encompassing over 175,000 people97. A study in Sweden found that patients with ADHD had an almost 50% greater risk of serious transport accidents.This was shown in 17408 individuals16. In a study done on 18,000 New Jersey drivers found that the crash risk for those with ADHD was a third greater than those without26.

People with ADHD are more likely to get mild traumatic brain injuries (mTBI). A meta-analysis found that those with mTBI were twice as likely to have ADHD than those without mTBI. The analysis was done on five studies, comprising over three thousand patients2.

Another study confirmed this finding. It found that high school and collegiate athletes (predominantly male football players) with ADHD were three times as likely to have had three or more reported concussions79.

People with ADHD are also more likely to get bone fractures. A study in Taiwan showed that boys with ADHD were 40% more likely to get bone fractures. And girls with ADHD were 60% more likely to have bone fractures. This study compared 7200 youths with ADHD with 36000 youths without ADHD37.

People with ADHD Struggle in Academics

Improving ADHD treatment is important for the global community because many children with ADHD are struggling with academics and treating them will enable them to reach their potential. Several studies show that ADHD is associated with poor performance in academics.

One study found that youths with ADHD were six times as likely to have a high level of emotional, conduct, and peer problems, and nine times as likely to manifest a high level of impairment including interference with home life, friendships, classroom learning, and leisure activities. This study was done on 8600 youths in the U.S92.

Another study found that children with learning-related behavior problems and very poor executive functions tended to fall increasingly behind their peers academically83.

Those with ADHD were twice as likely not to have graduated from highschool on time. This was on a sample of 30,000 adults with ADHD in the U.S48.

In another meta-analysis it was shown that ADHD was strongly associated with poorer performance on measures of overall, expressive, receptive, and pragmatic language. This meta-analysis covered 10 studies, and 830 youths with ADHD56.

Untreated ADHD Contributes to Crime

Improving treatment for individuals with ADHD is important for the global community because it could reduce crime significantly. Individuals with untreated ADHD are at significantly higher risk to engage in criminal activity. One article says that current meta-analysis provides an estimate that 21.7% of those who are incarcerated have ADHD31. That is, a rate approximately 3 times what is normally found in a population. One meta analysis showed that as much as 21% of prison populations could have ADHD105.

Some researchers believe that this might be because of low self control in populations with ADHD. “Self control may be the single most important variable in explaining developmental origins of antisocial behavior72”. Children with poor self-control were more likely to be convicted of a criminal offense, even after accounting for social class origins and IQ72. The study’s findings “imply that innovative policies that put self-control center stage might reduce a panoply of costs that now heavily burden citizens and governments”.

A study of the Danish population found that those diagnosed with ADHD were more than 60% more likely to be convicted of criminal offenses and were 70% more likely to be incarcerated23.

Another study done in Denmark found that children with ADHD were 2.7 times more likely to be victims of violent crimes than their typically developing peers. This study looked at 678,000 individuals74.

ADHD Results in Economic Loss

Treating ADHD is important because it’s causing a lot of economic costs world wide. A systematic review of seven European studies of hundreds of thousands of participants estimated total ADHD-related costs in the Netherlands as €9860 to €14,483 per patient per year, with annual national costs more than €1 billion57.

Another review found that ADHD was associated with overall national annual costs from $143 to $266 billion. Costs borne by family members of people with ADHD ranged from $33 - $43 billion. This review consisted of 19 U.S. studies of hundreds of thousands of people43.

A study conducted in Denmark showed that adults with ADHD had an annual economic burden of just over €20,000 compared with their normally developing siblings. A study done on 69,353 people diagnosed with ADHD in South Korea estimated that the total annual economic burden due to ADHD was estimated to be $47.55 million41.

A study done in Brazil showed that the country is probably wasting approximately 1.841 billion Real (350million USD) per year on the direct consequences of not treating ADHD in the age range of 5-19 years alone65. If the government spent 377millon Real (70million USD) to treat this population, they would save 1.163 billion Real (225 million USD ) per year.

A review of 44 studies showed that ADHD could cost 831.38 to 20,538 for each person and from $US356 million to 20.27 billion for national estimates. This study included Australia, and countries from North America, Europe, and Asia. These studies calculated economic burden across multiple domains of direct, indirect, and education and justice system costs for both children and adults with ADHD20.

ADHD also results in economic losses due to poor job performance. One study found that those with ADHD had an average of 22 annual days of lost role performance compared with those without ADHD. This was shown in over 7000 workers in ten nations28.

Tractability

Treating ADHD world-wide is a very tractable problem. The most common treatment for ADHD is medication. Medication protocols are well established and they show improvements in many domains such as academics, criminality, and injuries due to accidents. Despite the stigma against stimulant medications in the popular narrative, research shows that they are safe to use. Plus, stimulant medication is relatively cheap. In addition, treatments like CBT are being developed, and they show promising results. Finally, innovations like telehealth might mean that ADHD treatment can penetrate into underserved areas with underdeveloped healthcare infrastructure.

ADHD Medication is Effective and Well Described

The world wide public health challenge of ADHD is tractable because many studies show that protocols for using medications for ADHD are well described in detailed guidelines prepared by professional health care associations5.

A network meta-analysis found stimulants to be highly effective in reducing the symptoms of ADHD in all age groups when compared with placebo88. Another meta-analysis of 18 studies with over 2000 adults with ADHD found medications to be associated with moderate reductions in ADHD symptoms15.

A meta-analysis of seven studies, with almost 1500 participants showed that medication improved ADHD symptoms relative to placebo68. Another meta-analysis, covering six randomized control trials with 253 participants, reported that medication strongly reduced adult ADHD symptoms, with higher doses resulting in greater improvement33.

Medication helps people with ADHD with borderline intellectual functioning too. A meta-analysis of 8 studies, 423 children with borderline intellectual functioning reported moderate-to-strong improvements in ADHD symptoms94.

The improvement that medication has on the brain can be seen in fMRI machines. A meta-analysis of 14 with 212 participants reported that medication treatment for ADHD made the brains of youths with ADHD function in a way that was more like the brains of people without ADHD in brain areas involved in the control of cognition, which is typically disrupted in ADHD87.

ADHD Medication REDUCES Criminality

A Swedish cohort study of over 25,000 ADHD patients found a one-third reduction in criminality among men receiving ADHD medication, and a 40 % reduction for women61.

A Danish national registry study of over 4200 individuals with childhood ADHD found that crime rates in adulthood were 30–40 % lower during periods of taking ADHD medication75.

ADHD Medication Improves Academics

A meta-analysis of 19 group trials with over 1600 participants found medication produced moderate to large improvements in teacher-rated ADHD symptoms, teacher-rated behavior, and parent-rated quality of life. The analysis also demonstrated that medication was safe, there was no evidence of serious adverse events, and just a slightly elevated risk of non-serious side effects91.

A Swedish registry study of over 650,000 students found that treatment with ADHD medication for three months resulted in higher grades. Plus, treatment was associated with an increase in the probability of completing upper secondary school by two-thirds44.

A Swedish study of 61,000 youths with ADHD found that their test scores were higher during periods they were taking medication vs non-medicated periods63.

A Danish study of over half a million children (over 6400 with ADHD) found that discontinuation of ADHD medication was associated with a small but significant decline in grade point averages52.

ADHD Medication Improves Quality of Life

ADHD medication also reduced the risk of depression. This was shown for more than 38,000 individuals with ADHD in a nationwide longitudinal cohort study in Sweden16.

A meta-analysis of nine RCTs comprising 1463 patients found that discontinuing medications led to a worsening in quality of life for children and adolescents but not adults98.

ADHD Medication can Prevent Injuries due to Accidents

One study found that ADHD medication results in a 20% lower rate of all cause mortality. This study looked at 68000 Taiwanese children and adolescents.

Another study that looked at 90,000 individuals with ADHD younger than 18 years of age showed that those taking medication for it had a 57% reduction in risk of burn injuries18.

A Danish study of 700,000 including 4557 with ADHD found that stimulant treatment was associated with a 30% decrease in rates of injuries for 10 year olds, and a 40% decrease for twelve year olds27.

A study followed 9421 Swedish youths with ADHD and 2986 youths with both ADHD and other psychiatric diagnoses from 2006 to 2013. While those in the group were taking medication they had >10% reduction in unintended injuries, and 70% reduction in traumatic brain injuries in particular35.

Another study confirmed the findings about a reduction in brain injury. A Taiwanese study of over 124,000 youths with ADHD found that medication halved the risk for traumatic brain injuries59.

Finally, ADHD medication has been shown to reduce the risk of bone fracture. A study from Taiwan identified over 6200 youths newly diagnosed with ADHD and assessed the effect of medication. The risk of bone fractures was 20 % lower in those who18 were treated for more than half a year.

ADHD Medication is Cheap and Cost Effective

Non-stimulant medication costs between 2-6$ per patient per day and immediate-release stimulants costs $.30 -$2.24 per patient per day10.

A study of people in Israel showed that the estimated cost per person with ADHD due to lower education attainment, higher involvement in crime and car accidents and more drug abuse is 289,969 USD and the estimated cost for optimal treatment is 41,667 USD. Hence, the benefit cost ratio is 7.02 and, assuming only 50% success of treatment, it is 3.51, still a very high cost benefit ratio81.

One study argues that adult ADHD is a condition which is cost effective to treat from the societal perspective because of the efficacy and relatively low cost of the medicines used for its treatment Additionally, among children and adolescents with ADHD, there is consistent evidence that pharmacotherapies are cost effective compared with no treatment or behavioral therapy51.

ADHD Treatment can be Expanded.

One meta analysis looked at data from 32 studies which included 896 participants. It found medium to large improvements in symptoms after CBT for adults with ADHD53.

Plus, the COVID19 pandemic led to an increase in telehealth. Telehealth treatments can improve the accessibility of ADHD services100.

Neglectedness

Though interest in ADHD research has increased in the last few decades, ADHD is still a neglected problem. First, it is equally prevalent in areas with poor health care infrastructure like rural areas of developing countries. Second, there are many areas of ADHD that have yet to be researched. Finally, much of the costs of ADHD are borne alone by those who have ADHD and their family.

ADHD is Prevalent in Areas With Poor Healthcare Infrastructure

In India prevalence of ADHD in the present study in rural primary school children was found to be 6.3% which is in agreement with the other studies conducted across different parts of India89. One study in rural Ethiopia showed that the prevalence rate of attention deficit hyperactivity disorder (ADHD) among children was 7.3%62. A study of children and adolescents with HIV/​AIDS in Uganda showed that ADHD had a prevalence of 6% in that group. ADHD was associated with poor academic performance, school disciplinary problems and early onset of sexual intercourse77. A study conducted in rural Nigeria showed that the prevalence of ADHD was 6.6%107. A study in that looked at a sample of elementary school students in rural China showed that ADHD had a prevalence of 7.5%102.

Many Areas of ADHD Research Need More Study

A systematic review of ADHD research in Arab countries says that although there has been an increase in ADHD research in Arab countries in recent years, this research remains relatively sparse4.

Another study states that although ADHD “is well known in children/​adolescents, and with a growing body of scientific literature on ADHD in adults, epidemiologic data is limited to individuals under age 50. However, it remains under-researched, under-recognized, and under-addressed in older adults90.” This shows that although ADHD is well researched in a particular country, the research isn’t equitably distributed amongst all age groups.

Additionally although there might be research on ADHD, this information isn’t getting disseminated to professionals that need to know about it. For example, one study found that students with ADHD generally feel less close to their teacher than do their non-ADHD peers, which agrees with the teachers’ perceptions. Thus, teachers experience less emotional closeness, less co-operation and more conflicts in their relations with their students with ADHD than with other students. Teachers’ rejection of ADHD students poses a risk factor for not only school failure, but also peer exclusion and rejection, leading to low self-esteem and loneliness32.

In a nationwide cohort study of over 750,000 Scottish school children found that those who had been prescribed medicine for ADHD were more than three times as likely as typically developing peers to have low educational achievement, more than twice as likely to drop out of school before age 16, more than eight times as likely to have a record of special educational needs, 50 % more likely to get injured, and 40 % more likely to be unemployed34.

ADHD is Undertreated

ADHD is also neglected because it is undertreated world wide. Although there are a lot of alarmist rumors in mainstream media that ADHD is overdiagnosed, the research says otherwise.

One study says that despite concerns about overdiagnosis and overtreatment, many children and youth diagnosed with ADHD still receive no treatment or insufficient treatment69. One study suggests that in the US there are 3 undertreated youths with ADHD for each potential mistreated case85.

Only 7.0% of children with ADHD received stimulant medication during the last year; moreover, only 3.6% had actually continued this treatment at the time of the interview. One fourth or less of those with ADHD received school-based services or psychosocial treatment. The male-female ratio in stimulant medication use was 10 to 1. In addition, only 0.2% of those with no psychiatric diagnosis received this treatment. ADHD and ADHD-not otherwise specified, impairment, and being male significantly predicted stimulant treatment50.

Undertreatment varies by demographic. African-American and Latino children, compared with white children, had lower odds of having an ADHD diagnosis and of taking ADHD medication25.

Another study showed that ADHD is underidentified and undertreated in females with ADHD. This may have substantial mental health and educational implications. This suggests that research is needed to develop a better understanding of clinical indicators of ADHD in females. 47

Another study showed that ADHD seems underdiagnosed and undertreated in prison populations. This study showed that a total of 1.9% of detained persons had a diagnosis of ADHD. Nobody received ADHD treatment.93

Researchers also claim that ADHD is undertreated in Brazil. In a statement three ADHD researchers estimated that only 16.2-19.9% of individuals affected by ADHD in Brazil were receiving first line treatment for the disorder in 2009-2010.70

This statement was confirmed by another analysis. In this analysis they conservatively estimated that 257,662 patients aged 5 to 19 years are not receiving ADHD treatment in Brazil.65

A study in Germany of 2380 individuals diagnosed with ADHD found that despite explicit German guidelines recommending ADHD medication, only a third were prescribed medication, dropping to one eighth four years later. Two-thirds received psychotherapy. The authors concluded that “guideline recommendations are not yet comprehensively implemented in everyday routine care” 60

Those who have ADHD, and their Families, Bear a Large Economic Burden

A study in Germany looked at 2380 individuals first diagnosed with ADHD as adults. Their direct healthcare costs in the year following diagnosis averaged €4,000 60

A review found that adults and children with ADHD had higher annual medical costs than controls. However, ADHD medication is a cost-effective treatment option with cost-effectiveness ratios ranging from $15,509 to $27,766 per quality-adjusted life year (QALY) gained. 71

Another study found that the annual average expenditure (direct cost) per ADHD patient was $1,574, compared to $541 among matched controls. It also found the annual average payment (direct plus indirect cost) per family member was $2,728 for non-ADHD family members of ADHD patients versus $1,440 for family members of matched controls.6

Another study showed that the economic burden of ADHD is cumulative. The majority of participants (63%) experienced an accumulated lifetime burden of illness and reported being financially less-well-off, had lower educational achievement, job performance, and greater social isolation due to their ADHD. 14

A study in Europe showed that ADHD patient healthcare costs ranged between €84 M and €377 M and social services costs were €4.3 M. While the majority of the costs were incurred by ADHD patients themselves, €161 M was healthcare costs to family members that were attributable to having an ADHD child/​adolescent. In addition, productivity losses of family members were €143–€339 M. 57

Another study echoed the finding regarding economic burden due to work loss. This study showed that adults with ADHD and adult family members of persons with ADHD lost $3.7 billion annually108.

A survey looked at 9108 individuals aged 0 to 17 years, with 458 having an ADHD diagnosis. The ADHD cohort was 4.90 times more likely than the non-ADHD cohort to have an expenditure and among those with positive expenditures, the ADHD cohort had 58.4% higher expenditures,54

Another study compared healthcare costs for youths with ADHD with matched controls without ADHD. The annual average cost per family member was $2728 for non-ADHD family members of ADHD patients, almost double the $1440 for family members of matched controls.95

A nationwide cohort study of over 445,000 people in the Swedish national registers compared healthcare costs for three groups: those with childhood ADHD that persisted into adulthood, those whose ADHD remitted in adulthood, and those who never had ADHD. Those who never had ADHD had average annual healthcare costs of €304. Those in remission had double the cost, and those with persistent ADHD over triple the cost. 30

In Denmark a nationwide population study calculated the socioeconomic cost of ADHD. It looked at over 83,000 persons with ADHD and matched them by sex and age to over a third of a million non-ADHD controls. It showed that the sum of direct health care costs, and lower income and employment costs to the average individual with ADHD came to just over €16,000. Including additional social transfers, the total rose to just over €23,000. The study also showed that partners of persons with ADHD also bore an additional burden of almost €5500. With additional social transfers, the total rose to €8000.46

Conclusion

ADHD is an important problem to address because researchers estimate that 5-10% of humankind suffers from ADHD. It is also important to treat because it causes a lot of negative effects. These effects include increased risk of injuries due to accidents, poor psychosocial well being, underachievement at school, higher criminality, and economic loss to the individual and to society.

Their disability isn’t visible to the naked eye, so their problems have not been addressed.

The problem of ADHD has become tractable because scientists have developed neuroimaging tools that can measure the differences in structure of ADHD vs non-ADHD brains. Additionally, they have developed treatments that are shown to be effective in multiple studies. Medication has been shown to be cheap and effective.

However, this research has not been able to reach people who live in areas with poor healthcare infrastructure.

Plus, there is a lot of misinformation and stigma that causes poor adherence to treatment.

Additionally, there is much more research to be done. There are a lot of demographics that haven’t been adequately addressed.

For generations, people with ADHD have been bearing the burden of ADHD without notice. Let’s end this long standing issue in this generation. Let’s expand ADHD research and access to ADHD treatment to all people throughout the globe.

I dedicate this essay to the reduction or elimination of suffering of all sentient beings who have ADHD.

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