arch dis child 2005 harpin i2 7

The effect of ADHD on the life of an individual, their family,and community from preschool to adult lifeV A Harpin. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Arch Dis Child 2005;90(Suppl I):i2i7. doi: 10.1136/adc.2004.059006

Attention deficit/hyperactivity disorder (ADHD) may affectall aspects of a childs life. Indeed, it impacts not only onthe child, but also on parents and siblings, causingdisturbances to family and marital functioning. The adverseeffects of ADHD upon children and their families changesfrom the preschool years to primary school andadolescence, with varying aspects of the disorder beingmore prominent at different stages. ADHD may persist intoadulthood causing disruptions to both professional andpersonal life. In addition, ADHD has been associated withincreased healthcare costs for patients and their familymembers.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Correspondence to:Dr V A Harpin, RyegateChildrens Centre,Sheffield Childrens NHSTrust, Tapton CrescentRoad, Sheffield S10 5DD,UK; [email protected]. . . . . . . . . . . . . . . . . . . . . . .

Attention deficit/hyperactivity disorder(ADHD) is a chronic, debilitating disorderwhich may impact upon many aspects of

an individuals life, including academic difficul-ties,1 social skills problems,2 and strained parent-child relationships.3 Whereas it was previouslythought that children eventually outgrow ADHD,recent studies suggest that 3060% of affectedindividuals continue to show significant symp-toms of the disorder into adulthood.4 Childrenwith the disorder are at greater risk for longerterm negative outcomes, such as lower educa-tional and employment attainment.5 A vitalconsideration in the effective treatment ofADHD is how the disorder affects the daily livesof children, young people, and their families.Indeed, it is not sufficient to merely considerADHD symptoms during school hoursa thor-ough examination of the disorder should takeinto account the functioning and wellbeing ofthe entire family.As children with ADHD get older, the way the

disorder impacts upon them and their familieschanges (fig 1). The core difficulties in executivefunction seen in ADHD7 result in a differentpicture in later life, depending upon thedemands made on the individual by theirenvironment. This varies with family and schoolresources, as well as with age, cognitive ability,and insight of the child or young person. Anenvironment that is sensitive to the needs of anindividual with ADHD and aware of the implica-tions of the disorder is vital. Optimal medical andbehavioural management is aimed at supportingthe individual with ADHD and allowing them toachieve their full potential while minimisingadverse effects on themselves and society as awhole.The aim of this paper is to follow the natural

history of this complex disorder through

preschool years, school life, and adulthood andto consider its effect on the family, the commu-nity, and society as a whole. In addition,comorbidities and healthcare costs are examined.

THE PRESCHOOL CHILDPoor concentration, high levels of activity, andimpulsiveness are frequent characteristics ofnormal preschool children. Consequently, a highlevel of supervision is the norm. Even so,children with ADHD may still stand out. In thisage group there is often unusually poor intensityof play and excessive motor restlessness.8 9

Associated difficulties, such as delayed develop-ment, oppositional behaviour, and poor socialskills, may also be present. If ADHD is apossibility, it is vital to offer targeted parentingadvice and support. Even at this early stageparental stress may be huge when a child doesnot respond to ordinary parental requests andbehavioural advice.9 Targeted work with pre-school children and their carers has been shownto be effective in improving parent child inter-action and reducing parental stress.10 11 A usefulreview of the available evidence and methods isprovided by Barkley.12

PRIMARY SCHOOL YEARSThe primary school child with ADHD frequentlybegins to be seen as being different as classmatesstart to develop the skills and maturity thatenable them to learn successfully in school.Although a sensitive teacher may be able toadapt the classroom to allow an able child withADHD to succeed, more frequently the childexperiences academic failure, rejection by peers,and low self esteem (fig 2). Comorbid problems,such as specific learning difficulties, may alsostart to impact on the child, further complicatingdiagnosis and management. Assessment by aneducational psychologist may help to unravellearning strengths and difficulties, and advise onnecessary support in the classroom.Frequently, difficulties at home or on outings

with carers (for example, when shopping, out inthe park, or visiting other family members) alsobecome more apparent at this age. Parents mayfind that family members refuse to care for thechild, and that other children do not invite themto parties or out to play. Many children withADHD have very poor sleep patterns, andalthough they appear not to need much sleep,daytime behaviour is often worse when sleep isbadly affected. As a result, parents have littletime to themselves; whenever the child is awakethey have to be watching them. Not surprisingly,

Abbreviations: CHQ, Child Health Questionnaire; ODD,oppositional defiant disorder.

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family relationships may be severely strained, and in somecases break down, bringing additional social and financialdifficulties.14 This may cause children to feel sad or even showoppositional or aggressive behaviour.Assessing the quality of life of the child suffering from

ADHD is difficult. Behavioural assessments are usuallycarried out by parents, teachers, or healthcare professionals,and it can usually only be inferred how the child must feel.However, data from self evaluations indicate that childrenwith ADHD view their most problematic behaviour as lesswithin their control and more prevalent than childrenwithout ADHD.15 Participation in a school based, nurse ledsupport group was associated with an increase in self worthin pre-adolescents with ADHD.16

Johnston and Mash reviewed the evidence of the effect ofhaving a child with ADHD on family functioning.14 Theyconcluded that the presence of a child with ADHD results inincreased likelihood of disturbances to family and maritalfunctioning, disrupted parent-child relationships, reducedparenting efficacy, and increased levels of parent stress,particularly when ADHD is comorbid with conduct problems.In a survey of the mothers and fathers of 66 children,

parents of children with ADHD combined and inattentivesubtypes expressed more role dissatisfaction than parents ofcontrol children.17 Furthermore, ADHD in children wasreported to predict depression in mothers.18 Pelham et alreported that the deviant child behaviours that representmajor chronic interpersonal stressors for parents of ADHDchildren are associated with increased parental alcoholconsumption.19

Limited attention has been given to sibling relationships infamilies with ADHD children. While it has been reported thatsiblings of children with ADHD are at increased risk forconduct and emotional disorders,20 a more recent study

presenting sibling accounts of ADHD identified disruptioncaused by symptoms and behavioural manifestations ofADHD as the most significant problem.21 This disruptionwas experienced by siblings in three primary ways: victimisa-tion, caretaking, and sorrow and loss. Siblings reportedfeeling victimised by aggressive acts from their ADHDbrothers through overt acts of physical violence, verbalaggression, and manipulation and control. In addition,siblings reported that parents expected them to care for andprotect their ADHD brothers because of the social andemotional immaturity associated with ADHD. Furthermore,as a result of the ADHD symptoms and consequentdisruption, many siblings described feeling anxious, worried,and sad.21

Broader social and family functioning has been assessedusing the Child Health Questionnaire (CHQ), a parent ratedhealth outcome scale that measures physical and psycho-social wellbeing.2224 The studies demonstrated that treatmentof ADHD with atomoxetine, a new non-stimulant medicationfor ADHD, resulted in improved perception of quality of life,with improvements being apparent in social and familyfunctioning, and self esteem. Further research assessing theongoing quality of life for the child and their family followingmultimodal input is urgently needed.

ADHD IN YOUNG PEOPLEAdolescence may bring about a reduction in the overactivitythat is often so striking in younger children, but inattention,impulsiveness, and inner restlessness remain major difficul-ties. A distorted sense of self and a disruption of the normaldevelopment of self has been reported by adolescents withADHD.25 Furthermore, excessively aggressive and antisocialbehaviour may develop, adding further problems (fig 3). Astudy by Edwards et al27 examined teenagers with ADHD and

ADHDonly

Low self esteem

Age (years)Key stage

72

113

13Adult4

Learningdelay

Disruptivebehaviour

Poorsocial skills

Challengingbehaviour

Criminalbehaviour

Oppositionaldefiant disorder

Conductdisorder

Substanceabuse

Schoolexclusion

Lack ofmotivation

Complexlearning difficulties

Figure 1 Stages of ADHD. Adaptedfrom Kewley G (1999).6

100

80

60

40

20

0Social/

emotionalParent

emotionSelf esteem Mental

healthBehaviour Parent time Family

activities

CH

QP

F50

scal

e sc

ore

National normboys (n = 212)ADHD (n = 83)

Figure 2 Emotional and familyfunctioning in children with ADHDcompared with controls.13 *Higherscores indicative of greater functioning.CHQ, Child Health Questionnaire.13

Effect of ADHD on the life of an individual, their family, and community i3



oppositional defiant disorder (ODD), which is defined by thepresence of markedly defiant, disobedient, provocative beha-viour and by the absence of more severe dissocial or aggressiveacts that violate the law or the rights of others. Theseteenagers rated themselves as having more parent-teenconflict than did community controls. Increased parent-teenconflict was also reported when parents of teenagers withADHD carried out the rating exercise. In addition, a survey of1115 year olds showed that those with hyperkinesis weretwice as likely as the overall population to have a severe lackof friendship.28

Young people with ADHD are at increased risk of academicfailure, dropping out of school or college, teenage pregnancy,and criminal behaviour (fig 4A and B). Driving poses anadditional risk. Individuals with ADHD are easily distractedfrom concentrating on driving when going slowly, but whiledriving fast may also be dangerous. It has been shown that,compared with age matched controls, drivers with ADHD areat increased risk of traffic violations, especially speeding, andare considered to be at fault in more traffic accidents,including fatal ones (fig 5).30 The risk of such events wasincreased further by the presence of concomitant ODD.29

However, it has been suggested that treatment may have apositive effect on driving skills.31

ADULT LIFEAs many as 60% of individuals with ADHD symptoms inchildhood continue to have difficulties in adult life.32 33

Adults with ADHD are more likely to be dismissed fromemployment and have often tried a number of jobs beforebeing able to find one at which they can succeed.5 They mayneed to choose specific types of work and are frequently selfemployed. In the workplace, adults with ADHD experiencemore interpersonal difficulties with employers and collea-gues. Further problems are caused by lateness, absenteeism,excessive errors, and an inability to accomplish expectedworkloads. At home, relationship difficulties and break-upsare more common. The risk of drug and substance abuse issignificantly increased in adults with persisting ADHDsymptoms who have not been receiving medication.34 Thegenetic aspects of ADHD mean that adults with ADHD aremore likely to have children with ADHD. This in turn causesfurther problems, especially as the success of parentingprogrammes for parents of children with ADHD is highlyinfluenced by the presence of parental ADHD.35 Thus, ADHDin parents and children can lead to a cycle of difficulties.

COMORBIDITIESComorbid disorders may impact on individuals with ADHDthroughout their lives. It is estimated that at least 65% ofchildren with ADHD have one or more comorbid conditions.36

The reported incidence of some of the most frequentcomorbidities is shown in figure 6, with neurodevelopmentalproblems, such as dyslexia and developmental coordinationdisorder, being particularly common. Many children withADHD also suffer from tic disorders (not related to stimulant

60

50

40

30

20

10

0

Subj

ects

(%)

p < 0.01

Steali

ng

p < 0.01

Lying

p < 0.01

Delib

eratel

y

p < 0.01

Crue

lty to

p < 0.01

Crue

lty to

p = NS

Used

a we

apon

p < 0.01

Settin

g fire

s

p = NS

Break

ing an

d

p < 0.01

Truan

cy

p = NS

Physi

cally

Normal (n = 66)

ADHD (n = 23)Ages 1220 years at follow up

destr

oys p

ropert

y

anim

als

peop

le

in a f

ight

enter

ing fights

Figure 3 Antisocial behaviour inadolescents with ADHD.26 Dataprimarily represents outcomes in thosewith conduct disorder as teenagers.

60

50

40

30

20

10

0

A

Subj

ects

(%)

Expe

lled

Did n

ot co

mplet

e

Normal

ADHDMean age = 21 years

Normal

ADHD

high s

choo

l

Susp

ende

d

at lea

st on

ce

60

50

40

30

20

10

0

B

Subj

ects

(%)

Incarc

eratio

n

Subs

tanceab

use

Attem

pted

suicid

e

Inten

tiona

linj

ury

Repe

tition

of

grade Tee

n

pregn

ancy

Sexu

al tra

nsmi

ssion

of dis

ease

Dism

issal

from

job

Figure 4 Impact of ADHD in adolescence. Data from Barkley RA;26 (A) Impact at school; (B) impact on health, social, and psychiatric wellbeing.

i4 Harpin



medication). In addition, around 60% of children withTourettes Syndrome fulfil criteria for ADHD,38 39 and autisticspectrum disorder is increasingly recognised with comorbidADHD.39 Initially, excessive hyperactivity may mask thefeatures of autistic spectrum disorder until the child receivesmedication. Conduct disorder and ODD coexist with ADHD inat least 30%, and in some reports up to 90%, of cases.36 Thesemost frequently occurring comorbidities can, however, beconsidered more as complications of ADHD, with adversity intheir psychological environment possibly determiningwhether children at risk make the transition to antisocialconduct.40

PROBLEMS ASSOCIATED WITH TREATMENTGrowth deficits in children receiving stimulant treatment forADHD have long been the subject of scientific discussion.Conflicting results have been reported with some authorsindicating that stimulants do indeed affect growth inchildren,4143 but that this only occurs during active treatmentphase and does not compromise final height.44 Other studies,however, have not found any evidence to suggest thatstimulants influence growth.45 46 Taken together, the resultssuggest that clinicians should monitor the growth ofhyperactive children receiving stimulants, and consider dosereduction in individual cases should evidence of growthsuppression occur.Another frequently quoted concern about treatment of

ADHD with stimulant medications is that it could lead todrug addiction in later life. Young people with ADHD are bynature impulsive risk takers, and there is clear evidence thatuntreated ADHDespecially with concomitant conduct dis-orderis associated with a three- to fourfold increase in therisk of substance misuse.47 48 In contrast, patients medicatedwith stimulants have a similar risk of substance misuse tocontrols.49 These data therefore provide strong evidence infavour of careful treatment and support for young peoplewith ADHD.

HEALTHCARE COSTSHealthcare costs for individuals with ADHD in the UK havenot been fully estimated, but evidence from the USA suggeststhat they are increased compared with age matched controls.A population based, historical cohort study followed 4880individuals from 1987 to 1995 and compared the nine yearmedian medical cost per person: ADHD medical costs wereUS$4306, whereas non-ADHD medical costs were US$1944

(p,0.01).50 These findings are likely to reflect increasedinjury following accidents and a rise in use of substanceabuse services and other outpatient facilities, although poorability to comply with advice on medication (for example,asthma management) may also be implicated. A study of theinjuries to children with ADHD established that children withADHD were more likely to be injured as pedestrians orbicyclists than children not suffering from ADHD. They weremore likely to sustain injuries to multiple body regions, headinjuries, and to be severely injured.51 ADHD has been foundto represent a risk factor for substance abuse,47 52 and aninvestigation of prevalence of ADHD among substanceabusers has established that ADHD was significantly over-represented among inpatients with psychoactive substanceuse disorder.53 Increased use of health services is also seen inthe relatives of individuals with ADHD. A study has shownthat direct and indirect medical costs were twice as high asthose of family members of a control group.54 The differencein these costs was primarily due to a higher incidence ofmental health problems in the family members of ADHDpatients, which reflects the increased stresses and demandsof living with an adult or child with ADHD. Indeed, ADHDrelated family stress has been linked to increased risk ofparental depression and alcohol related disorders.5557

It is vital to consider the role of treatment of ADHD indecreasing the individuals risk of adverse outcomes. Anumber of studies on the effect of treatment of ADHD onthe risk of substance abuse encouragingly demonstrate a fallin risk to that of the normal population.5860

CONCLUSIONMannuzzas review of the long term prognosis in ADHDconcludes that childhood ADHD does not preclude higheducational and vocational achievements (for example,Masters degree or medical qualification).61 However, ADHDis a disorder that may affect all aspects of a childs life.Careful assessment is paramount, and if this demonstratessignificant impairment as a result of ADHD, there is clearevidence that treatment of ADHD should be instituted.62 63

Current treatment focuses mainly on the short term relief ofcore symptoms, mainly during the school day. This meansthat important times of the day, such as early morningsbefore school and evening to bedtime, are frequentlyunaffected by current treatment regimes. This can negatively

90

80

70

60

50

40

30

20

10

0Traffic

violationsSpeedingviolations

Drunkdriving

Licencesuspension

Driver causedaccidents

Subj

ects

(%)

p = 0.004

p = 0.07

p = NS

p = NS

p = 0.07

Control (n = 23)

ADHD (n = 25)Mean age = 22 years

Figure 5 Driving-related offences in young adults with ADHD andcontrols. NS, not significant. Data from Barkley RA et al.29

100

90

70

80

60

40

50

30

20

0

10

Developmentaldisorders

Psychiatricdisorders

Total comorbiddiagnoses

(at least n of theadjacent disorders)

AD

HD

pop

ulat

ion

(%)

MR RWD DC ODD Tic One Two Three

Figure 6 ADHD and comorbidity in Swedish school age children.37 MR,mental retardation; RWD, reading/writing disorder; DC, developmentalcoordination; ODD, oppositional defiant disorder.




impact on child and family functioning and fail to optimiseself esteem and long term mental health development.In 2003, the American Academy of Pediatrics recom-

mended that clinicians should work with children and theirfamilies to monitor the success (or failure) of treatment,using certain criteria to assess specific areas of difficulty andquality of life as a whole.64 There has been a reluctance in theUK to treat ADHD with medication, fuelled by concernsabout possible over-prescription in the USA. In addition,newspaper and media coverage of ADHD is often negativeand stigmatising. The evidence of potentially severe difficul-ties for the child, the family, and, in some cases, for society asa whole, means that coordinated multi-agency effort tosupport the child and family is essential. Moreover, health-care professionals have an important role in providingbalanced and supportive information about ADHD andmeeting the needs of affected individuals and their families.

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adult lifetheir family, and community from preschool to The effect of ADHD on the life of an individual,

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arch dis child 2005 harpin i2 7

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