Diagnosis and management of attention-deficit/hyperactivity disorder in children, young people, and adults: summary of NICE guidance
BMJ 2008; 337 doi: https://doi.org/10.1136/bmj.a1239 (Published 24 September 2008) Cite this as: BMJ 2008;337:a1239
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I read the summary of the latest NICE guidance on ADHD and
accompanying commentary with a mounting sense of dismay.
While not wishing to diminish the impact of severe ADHD on a child’s
development, I would like to highlight the increasing evidence from
neuroscience of the impact a child’s early environment, particularly
within the context of the developing attachment relationships with
caregivers, has on their developing brain. What happens interactionally
between babies and their parents will have consequences for their
developing emotional, social and cognitive skills (eg Fonagy and Target
2005). The strategic development of overactivity as a response to poorly
developing attachment relationships has been captured on video and written
about by a key researcher in the field (Crittenden 2002 & 2008). What
is more the cost effectiveness of early intervention is beginning to be
documented (Svanberg - in preparation for publication 2009). Finally, the
quality of attachments formed in the early years are being increasingly
shown to have a far reaching effect well beyond infancy, for instance on
adaptation to chronic ill health and needs of care receiving in the
elderly (Bradley and Cafferty 2001)
Yet, despite many efforts, the Association for Infant Mental Health
UK (AIMH UK)cannot persuade NICE to address the question of Infant Mental
Health. Evidence presented to the panel in the development of the
Antenatal and Postpartum Mental Health guidance about the impact of
parental ante and post natal mental illness or stress on the infant was
not accepted and incorporated. Hence the production of a guidance that is
woefully inadequate from the perspective of infants.
Infant Mental Health is an area where interventions could conceivably
have a significant impact at relatively little cost on the future mental
health of babies across their lifespan and on how they parent the next
generation. However, this is little known, accepted or even understood by
commissioners and providers of mental health care across the country. Like
services for ADHD, mental health services for babies and their parents are
patchy, often depending for their existence on the enthusiasm and interest
of individual clinicians.
Without a NICE guidance for Infant Mental Health we are never going
to see any change or hope that in the future we may be able to prevent
mental distress rather than just treat it.
References
Fonagy, P., Target, M.: Bridging the transmission gap: An end to an
important mystery of attachment research? Attachment & Human
Development, Volume 7, Number 3, September 2005 , pp. 333-343(11)
Crittenden PM: Raising Parents: Attachment, parenting and child
safety. Willan Publishing 2008
Crittenden, P. M.: Attachment, Information processing and psychiatric
disorder. World Psychiatry, 2002, 1(2), 72-75
Svanberg, P. O. : Promoting a secure attachment through early
screening and interventions: A partnership approach. In J. Barlow & P.
O. Svanberg (Eds.), Keeping the baby in mind. London: Routledge due 2009
Bradley JM, Cafferty TP: Attachment among older adults: Current
issues and directions for future research. Attachment & Human
Development, Volume 3, Number 2, September 2001 , pp. 200-221(22)
Competing interests:
None declared
Competing interests: No competing interests
With the publication of NICE clinical guidance (CG72: Attention
deficit hyperactivity disorder: Diagnosis and management of ADHD in
children, young people and adults) there has been renewed interest in the
prescription of psychostimulants for the treatment of ADHD in adults and
children. These treatments have already been approved for use in children
(NICE, 2006) but for the first time methylphenidate, atomexetine and
dexamphetamine have been recommended for adult pharmacotherapy. Whilst the
identification of effective treatments for these disorders is encouraging
it is noteworthy that NICE, albeit in a restricted manner, advises
healthcare professionals to be aware of the potential of these drugs for
misuse and diversion (Section 10.6.6). We believe that this caution is
warranted. Data released by the Department of Health (2008) indicated
great variation in prescribing to young people between Primary Care Trusts
(PCTs); with a 23-fold difference between the highest and lowest
prescribing areas. Given the short consultation time available to general
practitioners and patient/carer access to information resources via the
internet, there is increased scope for inappropriate prescribing through
misdiagnosis, faking of symptoms, or patient pressures (e.g. Harrison et
al., 2007; Mayes et al., 2008). Research conducted by our group in one of
the areas with the highest rate of prescription indicated that diversion
was common, and the lifetime prevalence of illicit methylphenidate use in
young people (31%) was second only to cannabis (Woolfall, 2006). In
adults, obtaining methylphenidate was harder but pharmaceutical
preparations of stimulants such as methylphenidate and dexamphetamine were
available on the illicit market for as little as £0.30 per tablet
(Geraghty, 2008). A recent US review of people who had been prescribed
methylphenidate found that approximately 20% had been approached to sell,
give away, or trade their medication at least once in their lifetime
(Wilens et al., 2008). Extending prescriptions to adults will mean that
access to illicit stimulants will be made easier.
That methylphenidate is misused is unsurprising; it is a Class B drug
in the UK, and subjective effects are described as ‘cocaine-like’ at
supratherapeutic doses (Swanson & Volkow, 2002). We believe that
without adequate monitoring of prescription rates and compliance, and
appropriate investigation of anomalies, it is likely that with the
introduction of NICE guidance, misuse of these drugs in both adults and
young people will increase. This has implications for both treatment
services for drug misuse (for which non-prescribed stimulant use is a risk
factor), and also for clinicians. Sustained release formulations of
methylphenidate are popular as they are clinically effective, and produce
high treatment adherence (Sanchez et al., 2005; Lage & Hwang, 2005).
However, as with immediate release preparations, pre-chewing of sustained
release tablets results in Cmax and Tmax that are higher than both
conventionally administered immediate and sustained release preparations
(Kimko et al., 1999). Sustained release formulations may therefore hold
higher abuse potential. ADHD is a strong risk factor for adult substance
use disorders, but stimulant therapy is protective against this outcome
(Wilens et al., 2008). Disruption of treatment regimens through diversion
of tablets (whether voluntarily or through coercion) into a vibrant
illicit market may therefore not only affect psychopathological outcomes
in ADHD patients, but may also increase vulnerability to substance use
disorders, particularly in young people without ADHD. In line with NICE
guidance we support prescription by experienced clinicians after clear
diagnostic criteria have been met. Furthermore we would also argue that
Drug (and Alcohol) Action Teams, which are local partnerships representing
local authorities, health, criminal justice and the voluntary sector, are
made fully aware of local prescribing and diversion rates and have in
place appropriate responses to misuse.
Department of Health. Table showing data on methylphenidate items
dispensed for each year from 2003 to 2008, broken down by age and PCT.
DEP2008-1888 House of Commons Library 2008, 10/07/2008.
Geraghty, O (2008) An Exploration of the Black Market Availability
and Costs of Licensed Medicines in the North West. Liverpool, Liverpool
John Moores University School of Pharmacy and Chemistry.
Harrison AG, Edwards MJ, Parker KCH (2007) Identifying students
faking ADHD: Preliminary findings and strategies for detection. Archives
of Clinical Neuropsychology 22: 577-588
Kimki HC, Cross JT, Abernethy DR (1999) Pharmacokinetics and Clinical
Effectiveness of Methylphenidate. Clinical Pharmacokinetics 37: 457-470
Lage M, Hwang P (2004) Effect of methylphenidate formulation for
attention deficit hyperactivity disorder on patterns and outcomes of
treatment. Journal of Child and Adolescent Psychopharmacology 14: 575-581
Mayes R, Bagwell C, Erkulwater J (2008) ADHD and the rise of
stimulant use among children. Harvard Review of Psychiatry 16: 151-166
National Institute for Health and Clinical Excellence.
Methylphenidate, atomoxetine and dexamfetamine for attention deficit
hyperactivity disorder (ADHD) in children and adolescents. Review of
Technology Appraisal 13 2006
Sanchez RJ, Crismon ML, Barner JC, Bettinger T, Wilson JP (2005)
Assessment of adherence measures with different stimulants among children
and adolescents. Pharmacotherapy 25:909-917
Swanson JM, Volkow ND (2003) Serum and brain concentrations of
methylphenidate: Implications for use and abuse. Neuroscience and
Biobehavioral Reviews 27: 615-621
Wilens, T.E., Faraone, S.V., Biederman, J.,Gunawardene, S. Does
Stimulant Therapy of Attention- Deficit/Hypercativity Disorder Beget Later
Substance Abuse? A Meta- analytic Review of the Literature. Pediatrics
2003; 111: 179-185.
Woolfall K (2006) Substance use among young people in Wirral,
Merseyside. Liverpool, Liverpool John Moores University.
Competing interests:
None declared
Competing interests: No competing interests
We wish to point out four critical failings in the NICE
recommendations on ADHD.
Firstly, in examining the validity of ADHD fundamental issues such as
gender distribution and cross-culturally validity were ignored. Thus,
important questions such as differences in rates of diagnosis by ethnicity
and the differing meanings attached to ADHD symptoms in different
societies were not addressed. This creates a risk of institutional racism
through imposing a certain worldview about childhood and its problems onto
communities who have differing beliefs and practices.
Second, although NICE recognizes that “the disorder remains one that
is defined at a behavioral level, and its presence does not imply a
neurological disease” (p. 17) and “The diagnosis of ADHD does not imply a
medical or neurological cause” (p. 29), the review refers to ADHD as a
‘neurodevelopmental disorder’. The evidence provided does not support this
view. For example, under section 5.8 “Is there consistent evidence of
genetic, environmental or neurobiological risk factors associated with
ADHD?” NICE note the lack of consistency found in neuroimaging studies and
conclude that the following brain regions may be implicated: left
prefrontal cortex, left thalamus, right paracentral lobule; frontal,
temporal, and parietal lobes; the striatum; splenium of the corpus
callosum; right caudate; total cerebral volume; right cerebral volume; and
portions of the cerebellum. Similarly, they conclude there is a positive
association with a large number of family-environmental adversity
indicators. This is the equivalent of putting a bet on all horses in the
race and celebrating your efficacy as a pundit!
Thirdly, extending the diagnosis into adulthood is based on a lack of
evidence (that ADHD has different features in adulthood compared to
childhood) rather the presence of any (that, for example, ADHD can be
reliably differentiated from similar presentations such as a personality
disorder).
Fourthly, NICE’s single most important recommendation is for
medication to be used as a first line treatment in ‘severe’ ADHD. Like
other systematic reviews of ADHD medication treatment, (1)(2)(3)(4)(5)
NICE notes the inadequate reporting of study methodology, possible bias,
limited reliability of results, and inadequate data regarding adverse
events, correctly concluding that the evidence does not support using
medication as a first line treatment for mild or moderate ADHD. Yet NICE
concludes that medication should be used as a first line treatment in
‘severe’ ADHD with only one reference cited in support of this (which is a
re-analysis of the data from the largest trial comparing medication and
behavioural treatments (6)(7)(8)) that concludes that the more severe
subgroup showed a larger decrease in symptoms with medication than with
behaviour therapy (9). However, this data was gathered at 14 months after
the beginning of the study; Swanson et al (10) analyzing the same group of
patients after 36 month could not find support for beneficial long-term
effects of medication over behaviour therapy, even in those with more
severe symptoms, whilst finding that those exposed to medication for the
longest periods were now significantly lighter and shorter.
These guidelines are likely to expose many children and adults to
unnecessary harm. The recommendations are not supported by the evidenc
analysed by NICE. The evidence should lead to the conclusions that ADHD is
not a neurodevelopmental disorder, is of questionable validity,
particularly as a diagnosis for adults, and use of medication should be a
‘research only’ recommendation.
References
1. Jadad AR, Boyle M, Cunningham C, Kim M, Schachar R. Treatment of
attention-deficit/hyperactivity disorder. Evidence Report: Technology
Assessment (Summary). 1999; i-viii, 1-341
2. Klassen A, Miller A, Raina P, Lee SK, Olsen L. Attention-deficit
hyperactivity disorder in children and youth: A quantitative systematic
review of the efficacy of different management strategies. Can J Psychiat
1999; 44: 1007-1016.
3. Schachter HM, Pham B, King J, Langford S, Moher D. How efficacious
and safe is short-acting methylphenidate for the treatment of attention-
deficit disorder in children and adolescents? A meta-analysis. Can Med
Assoc J 2001; 165:1475-1488.
4. McDonagh MS, Peterson K. Drug Class Review on Pharmacologic
Treatments for ADHD. Oregon Health and Science University: Portland, 2005.
5. King S, Griffin S, Hodges Z, et al. A systematic review and
economic model of the effectiveness and cost-effectiveness of
methylphenidate, dexamfetamine and atomoxetine for the treatment of
attention deficit hyperactivity disorder in children and adolescents.
Health Technol Assess 2006; 10(23).
6. Jensen PS, Arnold E, Swanson JM et al. 3-year follow-up of the
NIMH MTA study. J Am Acad Child Adolesc Psychiat 2007; 46:989-1002.
7. The MTA Cooperative Group. A 14-Month Randomised Clinical Trial of
Treatment Strategies for Attention-Deficit/ Hyperactivity Disorder Arch
Gen Psychiat 1999; 56: 1073-1086.
8. Molina BS, Flory K, Hinshaw SP, et al. Delinquent behavior and
emerging substance use in the MTA at 36 months: prevalence, course, and
treatment effects. J Am Acad Child Adolesc Psychiat 2007; 46: 1028-40.
9. Santosh P, Taylor E, Swanson J, et al. Refining the diagnoses of
inattention and overactivity syndromes: A reanalysis of the Multimodal
Treatment study of attention deficit hyperactivity disorder (ADHD) based
on ICD-10 criteria for hyperkinetic disorder. Clin Neurosci Res 2005; 5:
307-314.
10. Swanson JM, Hinshaw SP, Arnold LE, et al. Secondary evaluations
of MTA 36-month outcomes: propensity score and growth mixture model
analyses. J Am Acad Child Adolesc Psychiat 2007; 46:1003-14.
Competing interests:
Sami Timimi was invited to give evidence to a one day conference organized by NICE ADHD Guidelines development group, and has commented on earlier drafts of the guideline.
Jonathan Leo was a peer reviewer for the first draft of the NICE ADHD Guidelines examining the ‘validity’ of ADHD.
Competing interests: No competing interests
ADHD is Neither a Disease or a Disorder
FRED A. BAUGHMAN, JR. M.D.
NEUROLOGY AND CHILD NEUROLOGY (Board Certified)
FELLOW, AMERICAN ACADEMY OF NEUROLOGY
fredbaughmanmd@cox.net
1303 HIDDEN MOUNTAIN DRIVE
EL CAJON, CA 92019
Tele:(619) 440-8236 Fax: (619) 442-1932
Re: NICE ADHD Guidelines
September 30, 2008
Ladies and Gentlemen,
Please publish the following:
ADHD is Neither a Disease or a Disorder
Comment on NICE ADHD Guidelines
By Fred A. Baughman Jr., MD
We should be clear from the start that having a disease or a disorder
means one has an objective physical abnormality. The first obligation of
all physicians is that of diagnosis. The first question posed by the duty
to diagnose is: Is there a physical abnormality—gross (a visible or
palpable lump), microscopic (cancer cells of biopsy or ‘Pap’ smear), or
chemical (as in diabetes, gout, phenylketonuria), yes or no? If “no,”
there is no disease and the patient is medically, physically normal. It
is this group, those with “no evidence of disease” (NED) from which all
psychiatric and psychological patients derive. The public worldwide has
been deceived and mislead for decades on this fundamental point that is
well known to physicians. No patient with ADHD or with any psychological
or psychiatric entity has an actual disease. Physicians telling them they
do knowingly deceive them abrogate their right to informed consent, and
drug normal individuals, that is, poison them. This is the standard of
care in psychiatry today.
NICE addresses the “disease” vs. “no disease,” physical vs. psychiatric
issue stating, “the disorder remains one that is defined at a behavioral
level, and its presence does not imply a neurological disease” (p. 17)
[1]. Using the term “disorder” which is synonymous with disease, meaning
“A disturbance of function, structure or both,” NICE sews the seeds of
confusion that for decades has lead patients and the public worldwide to
view ADHD and all psychiatric and psychological entities as diseases when
they absolutely are not [2].
Having called ADHD a “disorder” NICE stated: “The diagnosis of ADHD does
not imply a medical or neurological cause” (p. 29) [1]. Given that ADHD is
not a disease or a disorder, it is not appropriate to speak of it’s
possible medical or neurological causes. In medicine when no disease has
been found the diagnosis is “no organic disease” (NOD), or “no evidence of
disease” (NED), calling for no discussion of causation. To discuss cause
where no disease exists is to further mislead and confuse.
If one has relinquished all claims of a physical entity and has
accepted it is psychological or psychiatric, then and only then, would it
be appropriate to speak of contributing psycho-social causes such as home,
school, community, peer relations, etc., none physical. And yet NICE
concludes that medication should be used as a first line treatment in
‘severe’ ADHD as if “severe ADHD” was a proven, diagnosable disease, when
it too, along with all other classifications of ADHD, is not.
The American Academy of Pediatrics (AAP) ‘ diagnostic guideline’
referred to ADHD as the most common ‘neurobehavioral’ disorder of
childhood [3]. I responded
“‘Neurobehavioral,’ implies an abnormality of the brain, a disease [4].
And yet, no confirmatory, diagnostic, abnormality has been found…It is
apparent that virtually all professionals of the extended ADHD ‘industry’
convey to parents, and to the public-at-large, that ADHD is a ‘disease’
and that children said to have it are ‘diseased’-‘abnormal.’ This is a
perversion of the scientific record and a violation of the informed
consent rights of all patients and of the public-at-large. The wording of
the AAP Guideline should be changed, forthwith, to reflect the scientific
and medical facts of the matter.” Nor has there been proof of the
existence of ADHD as a disease from that date to the present.
In a letter to me of June 14, 2002, President of the Medical Board of
California, Bernard Alpert, MD, wrote: “Dear Dr. Baughman, Thank you for
your letter dated May 28, 2002 to Senator Liz Figueroa, relating to the
mental health profession’s representation of emotional and psychological
conditions as diseases of the brain…I share your concerns about the lay
public’s ability to correctly process and understand the prolific media
campaigns that target them for the sale of drugs and services. In my
opinion it is unfortunate that such advertising is allowed, and that it
often serves to mislead consumers rather than educate them…there is
tremendous professional support for categorizing emotional and
psychological conditions as diseases of the brain. In published
materials, some quoted in your letter, you will find that support from
chairs of psychiatric departments, the American Psychiatric Association
and professors of major medical schools. It is clear that the psychiatric
community has set their standard, and while one might disagree with it,
that standard becomes the legal standard upon which the Board must base
its actions. It is, therefore, the community that must change their
opinion and practice for it to become the legal standard. Sincerely,
Bernard Alpert, MD, Medical Board of California.”
One can see here that lies have become the legal standard of practice
of the psychiatric profession and of all physicians and other
professionals who practice mental health. Under the circumstances, to
state the truth and scientific facts of the matter would constitute
medical malpractice putting a critic, such as myself, in legal jeopardy.
All studies in the medical-scientific literature that have considered
ADHD to be a disease or disorder and that have conveyed this belief to
participating researchers, subjects and their families are invalid, should
be acknowledged as such, and should be withdrawn. Pam issued such a
challenge in 1990 when he wrote: “…any studies that do not meet standards
for proper research procedures or interpretation of data must not be
accepted for publication, or if already published must be discredited
within the professional literature” [5].
References.
1. NICE ADHD Guidelines:
http://www.nice.org.uk/guidance/index.jsp?action=byID&o=12061
2. Stedman’s Medical Dictionary, 25th Edition, Williams and Wilkins,
Baltimore, MD, 1990.
3. American Academy of Pediatrics, Committee on Quality Improvement and
Subcommittee on Attention-Deficit/Hyperactivity Disorder Clinical
practice: diagnosis and evaluation of the child with attention-
deficit/hyperactivity disorder. Pediatrics. 2000; 105:1158-1170
[Abstract/Free Full Text]
4. Baughman, FA, Diagnosis and Evaluation of the Child With Attention
-Deficit/Hyperactivity Disorder (letter) PEDIATRICS Vol. 107 No. 5 May
2001, pp. 1239
5. Pam, A. A critique of the scientific status of biological psychiatry.
Acta Psychiatricia Scandinavica, 82 (Suppl. 362), 1-35.
Competing interests:
None declared
Competing interests: No competing interests