The unmet needs of all adults with ADHD are not the same: a focus on Europe.

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The unmet needs of all adults with ADHD are not the same: a focus on Europe Expert Review of Neurotherapeutics Downloaded from informahealthcare.com by Korea University on 12/25/14 For personal use only.

Expert Rev. Neurother. 14(7), 799–812 (2014)

Ylva Ginsberg1, Kathleen Marie Beusterien*2, Kaitlan Amos2, Claude Jousselin3 and Philip Asherson4 1 Karolinska Institutet – Medical Epidemiology and Biostatistics, PO 281, SE-171 77, Stockholm, Sweden 2 Outcomes Research Strategies in Health, Washington DC, 20008, USA 3 Goldsmith College – Anthropology, SE14 6NW, London, UK 4 Kings College – Institute of Psychiatry, SE58AF, London, UK *Author for correspondence: [email protected]

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This review discusses the unmet needs in adult ADHD subgroups in Europe: adolescents in transition, adult patients, employees, older adults, and those in the criminal justice system. Analysis of the literature and an ADHD web forum was conducted. The visibility of adult ADHD remains low, and finding professionals able to diagnose is difficult for both adolescents as well as adults. Many ADHD cases go undiagnosed and untreated; ADHD may be mistaken for other common mental health conditions or missed in the presence of comorbidities. Pharmacological and psychosocial treatment services are very limited. Most employers do not understand how to address ADHD, and employees fear stigmatization. Older age individuals (>60 years) may feel worse with unrecognized ADHD, and those incarcerated with ADHD are likely to cost disproportionately more than their peers, with high recidivism rates. Strategies to address unmet needs and accommodate ADHD adults need not be expensive or time consuming to implement. KEYWORDS: adolescents • adult ADHD • Europe • health services • unmet needs

In 2008, the National Institute for Health and Clinical Excellence (NICE) published guidelines for the diagnosis and management of ADHD across the lifespan, recognizing that symptoms of ADHD persist into adulthood in approximately 40–60% of cases [1,2]. A recent largescale survey in six European countries found that adults with ADHD had significantly greater impairment than controls across many areas of life, including work, social and relationship functioning, mood/temper control, rulebreaking behavior, self-organization/planning, and financial difficulties, and these impairments were comparable across cultures [3]. Prevalence estimates for adult ADHD, which largely are dependent upon the method of data collection used, have ranged from 1.2 to 7.3% in Europe [4,5]. A cross-national prevalence study based on the Diagnostic Interview Schedule for the Diagnostic and Statistical Manual of Mental Disorders -IV (DSM-IV), published by the American Psychiatric Association, found the average prevalence for adult ADHD across five European countries to be 3.9% [4]. Recent general population prevalence studies in Germany, France, and Poland based on self-rating scales found prevalence estimates of 4.7, and 3.0 and 2.5%, 10.1586/14737175.2014.926220

respectively [6–8]. One study conducted by trained lay interviewers that examined the prevalence of ADHD among workers in 10 countries estimated that 3.5% of workers met the DSM-IV criteria for adult ADHD [9]. Given that psychiatric comorbidity is common in adult ADHD, prevalence rates of ADHD in outpatient psychiatric clinics are higher. Specifically, outpatient psychiatric populations in France, UK, and Sweden have shown prevalence rates of 24, 22 and 21%, respectively [10–12]. Prevalence rates of diagnosed adult ADHD, in contrast, have been found to be far lower; for example, studies in Spain and Germany both found the prevalence of diagnosed adult ADHD to be 0.04% [13,14]. Even though the DSM-5 addresses some of the limitations of the DSM-IV, clinical challenges remain: diagnostic heterogeneity, assessment of impairments, difficulties with differential diagnosis and comorbidity, and regional variability in reimbursement systems and who can diagnose and initiate treatment. In a recent cross-sectional study that included eight European countries, patients from inpatient and outpatient addiction treatment centers were screened for adult ADHD using both the DSM-IV and DSM-5 [15]. Prevalence

Ó 2014 Informa UK Ltd

ISSN 1473-7175

799

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Ginsberg, Beusterien, Amos, Jousselin & Asherson

Expert Review of Neurotherapeutics Downloaded from informahealthcare.com by Korea University on 12/25/14 For personal use only.

Table 1. Proportions of articles from adult deficit hyperactivity disorder literature search by European region: 2003–2013. European region

Total (%) (n = 6341)

Northern (UK, Nordic countries, etc.)

48%

Western (Germany, Netherlands, France, etc.)

37%

Southern Europe (Spain, Italy, etc.)

9%

Balkan region (Czech Republic, Turkey, Hungary, etc.)

3%

Eastern (Poland, Russia, Bosnia, etc.)

3%

estimates based on the DSM-5 only were slightly higher than those based on DSM-IV. Specifically, DSM-IV prevalence rates ranged from 5.4% in Hungary to 31.3% in Norway, whereas DSM-5 rates ranged from 7.6 to 32.6%, with an average rate of approximately 12% across all addiction centres. Although numerous studies describe adult ADHD and its impacts, few have examined unmet needs in this population. This review discusses unmet needs in selected adult ADHD subgroups in Europe resulting from lack of recognition and resources: adolescents in transition, adult patients, employees, older age individuals, and individuals in the criminal justice system. Specifically, we identify a range of unmet needs from the perspectives of these subgroups and provide suggestions on addressing them. Methods

Two data collection approaches were utilized. The first approach was a review of published literature in Medline and EMBASE from 01 January 2003 to 07 October 2013. Articles were included if they contained one or more European countries and discussed adult ADHD diagnosis challenges, access to care, standard treatment approaches, resource utilization, and/or costs. Search terms included adult (including all relevant terms) + ADHD (including all relevant terms) + country (Europe, European Union, individual European countries). The second data collection approach was a systematic qualitative analysis of data from a UK based adult ADHD web forum. All posts in two threads, ‘General Comments’ and ‘Diagnosis and Symptoms’, from 01 May 2013 through 01 October 2013 were analyzed. A 6 month time frame was chosen to provide a reasonable snapshot of relatively current patient concerns. Every message appearing in the two selected threads was reviewed to identify key themes, or topics, emerging from the data. Although one patient may have posted a message multiple times about the same topic, this was only counted once when enumerating the frequency that the respective topic/theme was raised. Results Summary of data analyzed

The literature review findings yielded a total of 6341 records. TABLE 1 reports the percentages of articles by European region. It 800

should be noted that there was high variation among countries within regions. For example, of the 50 European countries included, UK-based articles, where the NICE guidelines on adult ADHD were developed, represented the highest proportion of articles at 34%, and Germany-based articles represented the second highest proportion at 14%. Non-human studies and duplicates were excluded resulting in a total of 3639 abstracts for screening, of which 153 were selected for full text review. A further 81 articles were excluded after full text review, resulting in 72 articles plus 19 additional articles retrieved from references yielding a total of 91 relevant articles included in this review (FIGURE 1 presents a PRISMA diagram on reasons for exclusion). The qualitative analysis of the UK based adult ADHD web forum resulted in 263 coded statements, which were grouped into themes, including loss of employee/student productivity, challenges with the health care system in obtaining a diagnosis and treatment, and confusion about how to identify adult ADHD (TABLE 2). The qualitative research findings as well as those from the literature review are summarized below for each target adult ADHD subgroup. Adolescents in transition to adult health services

The transfer between child and adult services occurs at a time of increased vulnerability, when young people with ADHD likely require guidance and support from trusted carers, including health care professionals (HCPs). This is a time when they are required to make important decisions about their future and strive to develop a personal and social identity, whilst at the same time experiencing considerable emotional turmoil and change [16]. Their parents or guardians may also need additional support at this time. For example, Cadman and colleagues (2012) found that, in families of individuals with ADHD from 14 to 24 years of age, caregiver burden was substantial, particularly due to depression/anxiety and inappropriate behavior not being adequately addressed [17]. Many childhood services lack cohesion, transition mechanisms are poorly thought out, the need of the individual and their carers are often neither acknowledged nor adequately addressed, and last but not least there are limited adult services and/or ways to access them [16]. Adolescents with ADHD are leaving children’s services often with no readily identifiable adult service to support them [18]. Numerous web forum posters noted difficulties finding knowledgeable GPs: ‘I went to the GP and although I took a list of the symptoms didn’ t get them out because she was so dismissive. She basically said that because I got really good grades in school and am at university doing pretty well that I do not have ADHD. She suggested that I have anxiety because I was fidgeting a lot, twitching my leg’ ; ‘ I’ m positive my boyfriend has ADHD but the GP/mental health team are not even going to look into it for us. Many pediatric and child and adolescent mental health services (CAMHS) teams continue to see young people well past this age due to perceived difficulties transferring care to adult services [16]. Expert Rev. Neurother. 14(7), (2014)

Identification

The unmet needs of all adults with ADHD are not the same

Review

Records identified through Medline and EMBASE N = 6341 Non-human studies excluded (N = 564)

Screening Eligibility

Records screened at level 1 (titles and abstracts) N = 3639

Records eligible at level 2 (full-text review) N = 153

Articles from references/web N = 19 Included


Duplicates removed (N = 2138)

Records excluded-reasons (N = 3486) Not adult ADHD = 1887 Burden, predictors = 516 Genetic/neurophysiological = 485 Drug review/RCT, no standard of care = 329 Comorbidities = 187 Assessment measurement properties = 82

Records excluded after full-text review (N = 81) Not EU = 2 Not English = 23 Duplicate = 3 Not adult ADHD = 19 Burden, predictors = 13 Drug review/RCT, no standard of care = 14 Comorbidities = 7

Total number of records included N = 91

Figure 1. Adult ADHD unmet needs in Europe PRISMA diagram.

As far as transition is concerned, the experience of UK community pediatricians, as well as those in Sweden, particularly outside of the Stockholm area, is that there are not many places that their patients can go when they reach adulthood. The findings from a survey of 78 pediatricians located across different health regions of the UK found that almost a quarter of respondents felt that at least 40% of their patients would require ongoing services [19]. Only 22% of the respondents were aware of a dedicated clinic for adults in their area, although most perceived a clinical need for one. Also, many respondents indicated that adult ADHD services did not exist in their area or were difficult to access, and that the services that are available were perceived as being either ill-equipped or unwilling to take on this patient population. Another survey on the topic of ADHD services and the transition process was completed by 96 HCPs working within NHS Trusts in the East Midlands region of England, including those from CAMHS and adult mental health services (AMHS) [20]. The findings showed that, whereas 96% of respondents from CAMHS felt they possessed the necessary skills to assess and manage people with ADHD, only 54% of HCPs in AMHS felt this to be the case. Further examination of responses revealed that most (95%) of the AHMS providers lacked training or informahealthcare.com

knowledge specific to ADHD, and that they (86%) did not have adequate resources for seeing patients with ADHD. Loss of continuity of care

There is no accepted universal model to aid the transition of young people with ADHD to adult services [21]. One web forum poster explained a potential future scenario in order to manage educational transition: ‘ I take a year out of university and concentrate on fighting to get an NHS diagnosis - I might then return to uni the following year diagnosed and medicated.’ Many adolescents do not successfully transfer to adult services even if adult services are available. Many adults with ADHD do not receive services from adult mental health teams who perceive ADHD as falling outside their remit [16]. There is a high rate of discontinuation of medications, loss to follow-up and a remarkably low rate of successful transition to locally commissioned adult ADHD services among adolescents diagnosed with ADHD in childhood [22]. A retrospective analysis of a specialist ADHD database in North West England found that, of 104 adolescents who were eligible for transition to adult ADHD services over the consecutive 2-year study period, only 16 patients (15%) were successfully referred to the specialist adult ADHD services [22]. 801

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Table 2. Key themes identified in UK adult deficit hyperactivity disorder web forum analysis. Theme

Total codes (%) (n = 263)

Healthcare services

142 (54%)

GP lack of knowledge/distinction from comorbidities

35 (13%)

Long wait to be seen/diagnosed

22 (8%)

Psychiatrist/certified psychiatric nurse lack of knowledge

18 (7%)

Lack of medical clinics/doctors for diagnosis/treatment of ADHD

17 (6%)

Reluctance of GPs to prescribe medications

16 (6%)

Multiple referrals/setbacks with healthcare services

15 (6%)

Thought to be solely a ‘childhood’ condition

5 (2%)

Public NHS psychiatric hospital/psychiatrist does not prescribe for ADHD

5 (2%)

Reimbursement hurdles

5 (2%)

Cumbersome diagnostic screening

3 (1%)

Health care provider perception of lack of treatment efficacy

Patient uncertainties/experience Uncertainty over indefinite diagnosis/prognosis/distinction from comorbidities Lack of belief by others/not a real ‘condition’ Medication fails to treat/fully treat ADHD

Employees Lost productivity Employee need of support services/flexibility Worry over potential discrimination/work impacts

Students Student need of support services/flexibility ADHD: Deficit hyperactivity disorder; GP: General practitioner.

An analysis of service needs was performed for all children 14 years and older from a pediatric neurodisability service in the UK (n = 139), of whom 71% had at least one co-morbid condition [23]. The findings showed that 37% were likely to need transition to AMHS as soon as they left pediatric services, and 36% would benefit from the expertise of a clinical nurse specialist, either to support a GP or adult mental health professionals. These young people will have more complex needs than those monitored solely by the GP but not severe enough requirements for AMHS. It was felt that 29% of young people could be monitored by the GP alone. It was noted that GPs may require initial support from a specialist nurse and further training in ADHD management to enable them to feel competent managing such patients, and that access back to specialist services needs to be available. Nevertheless, local pharmacy regulations often preclude the prescription of stimulant drugs by GPs [18]. In a study of 802

patients transitioning to adult ADHD services in Yorkshire, UK between June 2009 and February 2010, it was found that the dose of methylphenidate being taken by patients with ADHD was approximately half of what is normally recommended for that age group despite most patients being severely symptomatic [24]. In a study examining ADHD medication utilization trends in Sweden, the findings showed that patients aged 15–21 were the most likely to discontinue treatment; after 3 years and 11 months, 27% of these patients were still under treatment, a discontinuation rate that is higher than expected considering the persistence rates of the disorder [25]. Increased difficulty if ADHD is primary concern

Throughout Europe, transition to adult health services generally is more difficult if ADHD is the main or sole clinical 58 (22%) problem. For example, based on qualita35 (13%) tive research with individuals with ADHD in the UK, one of the key 12 (5%) themes to emerge was that transitions to AMHS were smoother when ADHD 11 (4%) was present along with mental health 48 (18%) problems more familiar to AMHS (e.g., 22 (8%) depression, self-harm). Hall and colleagues (2013) found that, whilst young 13 (5%) people with severe mental health disor13 (5%) ders were more likely to transfer to 15 (6%) AMHS, those with neurodevelopmental disorders (including ADHD) were more 15 (6%) likely not to meet the acceptance criteria for AMHS. The most common reported reason why adult service respondents felt that transition for ADHD cases can be unsuccessful was because the young person fails to meet the service threshold for acceptance; although this threshold varied considerably, there was a tendency for it to be related age alone or a combination of age and severity of condition [20]. Most CAMHS clinicians report that it is difficult to transfer a young person who is receiving pharmacotherapy for ADHD to AMHS [26]. The Hall et al. survey found that only just over half of HCPs in child services felt that young people prescribed medication for ADHD would meet acceptance criteria for AMHS. Given that ADHD medications are generally not licensed in adults and are typically not covered by shared care protocols with Primary Care, reluctance of AMHS to accept responsibility for ongoing prescribing and monitoring is likely to result in young people having to stop treatment [20]. 1 (0%)

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Adult ADHD patients

Although most research focusing on adolescents in transition focus on the UK, numerous studies suggest that similar issues are prevalent across Europe, regardless of patient age. Visibility of ADHD as a genuine condition remains low amongst the public and physicians in most European countries, and thus finding professionals able to diagnose adults is difficult [27–29]. Diagnosis of adults by pediatricians remains rather common [30]. Service provision for adults with ADHD varies widely across Europe. In the UK, with a few exceptions, the uptake of the recommendations of the NICE ADHD Guidelines has been poor [31]. Few areas have properly commissioned services, and treatment is usually offered piecemeal by individual clinicians with an interest in the disorder, essentially resulting in a postcode lottery for patients [32,33]. As one web forum poster noted: ‘ I don’ t know what to do or who to go to. This is Northern Ireland and a quick scan of google shows zero ADHD specialists in the area. I feel trapped and I don’ t know what to do.’ A qualitative study using semi-structured interviews of 30 English adults with ADHD (15 where ADHD was first diagnosed in adulthood and 15 where diagnosis was made in childhood or adolescence) found that many participants experienced a long and arduous process of getting an ADHD diagnosis, especially in adulthood, and some questioned if it was even worthwhile due to their negative experiences accessing care and subsequent lack of support. Barriers to treatment reported by participants included overwhelmingly negative and skeptical attitudes towards ADHD by health professionals, GPs being unwilling to prescribe medication, pharmacists being reluctant to stock or dispense ADHD medication, and lack of access to non-pharmaceutical treatments [34]. As web forum posters noted: ‘My son was diagnosed as a child with Deficits in Attention, Motor & Perception and was prescribed Ritalin/concerta up to age 18. He is now 24 and the ADD side of things is having quite a negative effect on his life. He wants to try medication again but his GP will not prescribe it, but has referred him to an ADHD specialist. I phoned today to find out how long the appointment would be & was told April or May next year. That’ s 10 or 11 months!!!’ ; “ My timeline: Under a psychiatrist and referred to public NHS psychiatric hospital for adhd about Feb 2012, Appt and diagnosis March 2013, Waiting since then for the report of my consultation to take to GP to get meds, and Overwhelmed with frustration and despair at waiting cos the report I hope is the key to meds - and therefore the key to the big ADHD fortress with a moat, ramparts and armed guardsmen that has to date shut me away from the possibility of a properly functioning life…” Currently, very few psychiatrists with expertise in general adult psychiatry have acquired the necessary knowledge to diagnose and treat ADHD and it remains the case that the majority do not yet recognize the clinical needs of this group [28,35–37]. Out of 1,030 consultant psychiatrists in England and Wales who responded to a survey, only 197 (19%) offer a service for adults with ADHD and the comments of respondents indicated a widespread reluctance on the part of adult psychiatrists and general practitioners to prescribe stimulants to adults [38]. A retrospective informahealthcare.com

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claims analysis covering the insured population of Nordbaden Germany found that only 33.5% of adults with ADHD saw a specialized physician at least once during the year [14]. Education about adult ADHD has not been included in most college programs for medical and psychology students, as well as training of professionals in adult mental health [28]. Being ill-prepared to care for adult ADHD may lead to higher medical resource utilization in this patient population. In a recent large-scale survey of adults with ADHD conducted in six European countries, ADHD was diagnosed after a median of 22 months and after consulting a median of two physicians [3]. Based on a general population survey including five European countries, likelihoods of a general practitioner visit (77 vs 65%), an emergency room visit (34 vs 11%), or a hospitalization (32 vs 8%) within the past 6 months were greater among diagnosed ADHD respondents than non-ADHD controls [39]. Treatment access

As appropriate, a multimodal treatment approach, including psycho-education, pharmacotherapy, and disorder-oriented psychotherapy, and family/couple therapy if needed, are recommended to address adult ADHD and associated comorbid disorders [1,28]. There is evidence for a significantly greater benefit of a combination therapy with medication and cognitive behavior therapy (CBT). However, to date, randomized placebo-controlled studies comparing the effects of medical management, specific psychotherapy, and the combination of both in adults with ADHD are lacking [40,41]. Researchers have noted that CBT may be tailored to account for personal resources people with ADHD are said to have, namely creativity and resilience. These resources could be therapy-relevant by creating positive beliefs about the self, hence improving coping skills and breaking the vicious circle of negative appraisal [42]. In general, psychosocial services are not readily attainable in adulthood. The 2013 qualitative study done by Matheson et al. [34] found that some participants deemed treatments such as CBT, counselling or life coaching beneficial, particularly at helping patients learn practical coping strategies and deal with the psychosocial burden. Participants reported unmet psychosocial needs, and many strongly desired additional psychological or educational support alongside medication to improve functioning but few had access to non-pharmacological treatment. Participants diagnosed in childhood reported greater access to psychosocial treatments whilst in child services, but these were often discontinued in adulthood [34]. Also, many ADHD cases go untreated, particularly because of the frequent presence of psychiatric comorbidities, which are more likely to be recognized and treated [2,43]. In a UK survey of GPs, it was found that, for patients who started ADHD treatment in adulthood, many received pharmacological treatment for comorbidities before a diagnosis of ADHD was made [44]. As appropriate, having GPs involved in the care of adult ADHD may make it more likely that patients obtain treatment. A study in Norway found that GP prescriptions for ADHD medication increased from 2004 to 2008 from 17 to 48% of the total 803

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volume, respectively, for all age groups [45]. A population-based prescription database study in Denmark found that, although GP’s rarely initiated treatment, treatment initiation based on GP’s advice increased with older age of the patient [46].


Discordance between pharmacotherapy use & ADHD prevalence

There are still many professionals that are unsure of the diagnosis and the appropriate use of ADHD medications in adult mental health [28]. Although the effectiveness of medications for adult ADHD has been demonstrated and replicated [47], there is high discordance between the numbers who are prescribed medication versus estimated prevalence rates [44]. For example, a study examining trends in prevalence of ADHD treatment in the Netherlands reported estimates of 0.63 and 0.43% among male and female adults, respectively, in 2010 [48]. Fayyad and colleagues (2007) found that adults with ADHD on any pharmacotherapy ranged from 10 to 24% across six European countries [4]. Finally, using the Swedish Patient Register and the Prescribed Drug Register in Sweden on ADHD medication prescriptions from 2006 to 2009, it was found that approximately one fifth of the adult ADHD patients did not receive medical treatment for their disease [49]. More than 59% of patients who received treatment had at least one treatment gap of 6 months, and 49% discontinued treatment during followup. Medication adherence seemed to be low particularly in younger patients (60 years of informahealthcare.com

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age) was 2.8%; symptomatic ADHD was 4.2% [62]. Older adults with ADHD have indicated that the condition gets worse as they get older, having had to endure ADHD impacts for a longstanding period, and this can sap motivation and outlook on life. An older age web forum poster noted: ‘ It’ s taken me 40 years to write this... I’ ve already used the delete button over and over as I try to get my point across; I went to my GP - I don’ t think he got much of a chance to say anything other than here are some antidepressants and there’ s the door. So no diagnosis at all, just an uncomfortable exchange that got me nowhere.’ A qualitative analysis showed that older adults with ADHD 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 [63]. A population-based study in Sweden found the prevalence of self-rated ADHD symptoms in childhood was 3.3% among 65–80 year olds. Those who reported more childhood ADHD symptoms also claimed general problems in childhood as well as worse current health [64]. Individuals in the criminal justice system

ADHD alongside oppositional defiant, conduct, substance use and antisocial personality disorders are substantial risk factors for criminal offending [65,66]. UK studies among offenders have indicated around 45% of youths and 24% of male adults screen positive for a childhood history of ADHD, 14% of whom have persisting symptoms in adulthood [67]. A screening of 90 male prisoners in Iceland found that 50% met the criteria for ADHD in childhood, and, of those, 60% were either fully symptomatic or in partial remission of their symptoms [68]. Prevalence rates of ADHD are comparable among female versus male offenders. In a Swedish sample of 96 incarcerated women, 29% met the DSM-IV criteria for ADHD, which was comparable to male offenders. In addition, 46% of the female offenders had misuse of alcohol, and 83% had misuse of narcotics the year prior to the incarceration [69]. Another study in Sweden, which compared the prevalence of symptoms consistent with ADHD in adults in the general population, outpatient psychiatry, and female convicts, found that ADHD and related problems occurred at a rate of 2.1, 6.6 and 50% respectively [70]. Another study of 110 adult female inmates in a German prison found the lifetime prevalence of ADHD was 24.5% and that the female prisoners with ADHD were younger at their first conviction relative to females without ADHD and they showed longer incarceration periods in relation to age [71]. Negative impacts of ADHD among offenders

Offenders with ADHD are likely to cost disproportionately more than their peers due to increased service consumption in terms of earlier and repeated contact with the criminal justice system and greater frequency and severity of institutional aggression. ADHD offenders account for eight times more aggressive incidents than other prisoners, and six-times more incidents when controlling for antisocial personality disorder, suggesting that ADHD contributes to disruptive behavior above 805


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and beyond antisocial personality disorder [72]. In the UK, 10 years ago, the broad cost of care per annum for the ‘average’ youth offender in the community was estimated to be GB £22,356, rising to GB £55,640 for an offender in prison [73,74]. A 2011 study investigating predictors of offending among the prison population used the official records of 198 Scottish inmates who completed screenings for ADHD and Axis I and Axis II disorders and found that 24% had childhood symptoms that met the DSM-IV criteria for ADHD. Of these, 56% were still either fully symptomatic or in partial remission of their symptoms (14% of the total sample in the study). The ADHD symptomatic group had a significantly larger number of total offences and a larger number of acquisitive and violent offences than other prisoners. Although frequent heroin use in the year prior to imprisonment was the single most powerful predictor of the extent of total offending, the strongest predictor for violent offending was ADHD symptoms [75]. The British Cohort Study provided 30-year follow-up data for 10-year-old ADHD children, and found that both males and females with ADHD were at risk for police contact. For males, this was more likely to be associated with persistent offending [76]. Benefits of treatment among the incarcerated

Despite the high prevalence of ADHD amongst the incarcerated, ADHD screening tools are not routinely administered to this population, and very few offenders have been diagnosed and treated [77]. A study of Swedish male inmates estimated the prevalence rate of ADHD to be 40%, and of 30 inmates with a confirmed ADHD diagnosis, only two had received an ADHD diagnosis in childhood [78]. Lichtenstein et al (2012) used Swedish national registers to gather information on 25,626 patients with a diagnosis of ADHD, their pharmacologic treatment, and subsequent criminal convictions in Sweden from 2006 through 2009. The findings showed that, as compared with nonmedication periods, among patients receiving ADHD medication, there was a significant reduction of 32% in the criminality rate for men and 41% for women [79]. In contrast, in the same study no effect of selective serotonin reuptake inhibitors on criminal conviction rates was observed, controlling for potential non-specific effects of engagement with treatment services. In a recent placebo-controlled study, men with ADHD and amphetamine dependence were recruited to start methylphenidate (MPH) in conjunction with twice weekly outpatient care upon release from prison in Sweden [80]. The findings showed that the MPH treated group significantly reduced their ADHD symptoms and had significantly higher proportion of drug negative urines compared with the placebo group, including more amphetamine negative urines, and better retention to treatment. In another placebo-controlled 5-week trial which evaluated osmotic-release oral system MPH in adult male long-term high security prison inmates with ADHD, medication was overall safe and highly effective in reducing ADHD symptoms, improving global and executive functioning, behavior control and quality of life; both in the short-term compared with placebo and over 52 weeks when delivered as 806

part of a multimodal treatment. No misuse of ADHD medication or side abuse of other drugs was detected by repeated urine drug screening in prison during the entire study period of 2007 through 2010 [81]. Psychological programs have been adapted to suit those with ADHD and for offenders. The renowned Reasoning and Rehabilitation (R&R) has been specifically adapted to be delivered to youths (aged 13 years or older) and adults with ADHD. This program matches the content and pace of treatment to specific characteristics which emphasizes the importance of adjusting treatment programs to maximize learning [82]. R&R has a host of international accreditations and is the most influential and widely adopted group offending behavior program available. Meta-analysis of the original program has demonstrated a 14% decrease in re-offending for R&R participants in institutional settings and a 21% decrease for participants in community settings [83]. Expert commentary

This review has identified a range of unmet needs specific to selected subgroups of adults with ADHD. TABLE 3 lists simple and more methodical strategies that may be initiated to help address these gaps in care or support. For adolescents with ADHD in transition, it is clear that enhancing communication among the various providers of care, as well as developing transition protocols to adult care that cut across the various health systems and address important patient issues, such as potential stigma attached to ADHD, would be helpful [16]. A potentially wide-reaching strategy is for clinicians to adopt a family perspective when managing ADHD. It particularly would be helpful for clinicians to screen for adult ADHD in parents when their children are being assessed, considering the high familial risk for ADHD (approximately 20% of first degree relatives of an ADHD proband) [84]. Per the NICE guidance, parental training is first-line treatment for young children or those with mild ADHD, meaning that parents are supposed to provide the structure for their child with ADHD, which is very difficult for a parent with unrecognized and untreated ADHD. Adult ADHD patients can benefit from simple strategies, including dissemination of adult ADHD brochures in physician offices, to larger scale education efforts, which may spark more interest in adult ADHD across medical disciplines and lead to more uniform care. Although physicians frequently involve the spouse, parents, and so on in patient management, providing education about the treatment process and follow-up, CBT is not easily accessible in many countries. For example, in the UK, psychologists, who typically use behavioral interventions like CBT, are not highly interested in treating adult ADHD; psychiatrists generally are driving treatment in this patient population. In Sweden, in contrast, psychologists are more involved and express interest in providing treatment for this population. It would be especially helpful to provide GP’s with the tools to screen for ADHD, such as the Adult ADHD Self-Report Scale [85]. Mental health professionals should be trained to use Expert Rev. Neurother. 14(7), (2014)


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Table 3. Strategies to address unmet needs in selected adult deficit hyperactivity disorder subgroups. Adult ADHD subgroup

Strategies to address unmet needs

Adolescents in transition

• Foster engagement among pediatricians, child psychiatrists, adult providers, both GPs and psychiatrists, through open discussion and psychoeducation about ADHD, the benefit of evidenced based psychological and pharmacological treatment where appropriate, and the risks of patient disengagement • Develop clear transition protocols through collaboration among commissioners, pediatric services, adult mental health providers, and primary care to facilitate transition and ensure standards of care are maintained during the transition period • Adopt a family perspective and screen for adult ADHD in parents when their children are being assessed • Incorporate ways to address concerns about stigma associated with referral to adult services

Adult ADHD patients

• Incorporate ADHD in mainstream training for healthcare professionals, including psychology, nursing and medical training • Educate policy makers, reimbursement authorities, and clinicians to the functional difficulties and respective potential humanistic and economic impacts faced by adults with ADHD • Provide physicians with the tools to screen for ADHD. For example, the Diagnostic Interview for ADHD in Adults is freely available for clinicians from www.divacenter.eu • Include ADHD evaluation in commonly used screening tools for general psychopathology to inform differentiation from key comorbid condition, e.g., generalized anxiety disorder, social phobia, depression and autism • Implement ADHD screening in addiction treatment centers, which some countries have established in most regions • Disseminate brochures on adult ADHD in GP offices

Employees

• Provide psycho-educational group sessions combining ADHD awareness with job application skills, which could be provided through partnership • Implement work/life and employee assistance programs, assistance with child care, parent training programs, flexible work and leave policies, and information and referral services • Implement individualized and confidential interventions and structured skills training • Educate managers on processes that can increase ADHD employee effectiveness (providing advanced notice, flexibility, etc.); consider offering compensatory cognitive supports such as personal assistants, work assistants, and assistive technologies • Offer enclosed work spaces

Older age (+60 years)

• Advertise (potentially through GP offices) benefits of practices for therapeutic or socially integrating aims, including group meetings and structured courses (mindfulness, yoga, anger management, and life skills courses) • Facilitate involvement in delivering courses by using their experience and expertise in ADHD and help fill the gap in services

Criminal justice system

• Educate criminal justice workers at different levels (i.e., probation and barristers) pre court-appearance • Establish screening and treatment programs for ADHD within offender management services • Match the content and pace of treatment to specific offender characteristics, thus emphasizing the importance of adjusting treatment programs to maximize learning, consistent with revised Reasoning and Rehabilitation (R&R2)

ADHD: Deficit hyperactivity disorder; GP: General practitioner.

the Diagnostic Interview for ADHD in Adults (DIVA), which is translated into several languages and is freely available for clinicians [86]. Mental health (including forensic settings) and addiction treatment centers could include ADHD evaluation as part of screening programs for general psychopathology [87–89]. Discussion of adult ADHD should be incorporated into mainstream training for healthcare professionals, including psychology, nursing and medical training. Adult ADHD support group members consistently report that the combination of psychosocial support and pharmaceutical treatments are meeting their needs. Given that access to formal psycho-educational support in communities is relatively scarce, some support groups for adult ADHD develop their own interventions, providing counseling, CBT, peer support and relevant courses; informahealthcare.com

such interventions could be further enhanced through closer links with health and social services [90]. To help prospective employees with ADHD, it would be useful to provide psycho-educational group sessions combining ADHD awareness with job application skills. Such sessions have been implemented in some regions through partnerships between job centers and charity groups for adults. Additional strategies to reduce the interference of ADHD symptoms in the workplace include educating managers on processes that can increase employee effectiveness, such as providing advance notice, flexibility, and so on and offering compensatory cognitive supports, such as work assistants, and assistive technologies [91]. It is important for employers to implement individualized and confidential interventions; structured skills training such as 807


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Dialectical Behavioral Therapy, which combines standard cognitive-behavioral techniques for emotion regulation and reality-testing with concepts of distress tolerance, acceptance, and mindful awareness, has been found to be effective [92]. In the UK, advocacy groups have referred to the Equality Act 2010 to ‘remind’ employers of their duty to ‘make reasonable adjustments’ because of impairments caused by ADHD [93]. It is worth noting that work is not always experienced negatively; some adults with ADHD may choose self-employment or employment with more flexible hours to fit their abilities and skills [94]. Older adults with ADHD indicate that the condition gets worse as they get older, having had to endure ADHD impacts for a longstanding period, and this can sap motivation and outlook on life. In addition, these individuals express that the process of being diagnosed can have both a positive and negative impact in that it can challenge their established identities, produce uncertainty, and brings forth memories that are sometimes painful. As such, it is useful to remind this older population that they are not alone. This can be done through advertising, group meetings, and facilitating their involvement in delivering courses on ADHD. For those in the criminal justice system, it would be useful to educate criminal justice workers at different levels (i.e., probation and barristers) pre court-appearance. Efforts for example are being made in Sweden, where education programs for those working in prisons are incorporating evidence-based information on managing individuals with ADHD. In several prisons, individuals who are on ADHD medication continue on medication when in prison. Limitations

The literature summarized in this review primarily is based on cross-sectional surveys and qualitative studies, not randomized, controlled studies. In addition, the review was limited to English written articles, and thus it is possible that a key concern of adult ADHD patients in Europe was missed. Also, the content of web forum analyzed appears to be primarily based on posts from dissatisfied individuals who have not yet been diagnosed and does not reflect potentially more positive experiences, including the hopes and the actions people are taking to ameliorate their situations and organize themselves. Nevertheless, we believe that the culmination of the qualitative research performed in adult ADHD yields rich data that are worthwhile for discussion and exploring for future research. Another limitation is that the literature highlighting unmet needs in adult ADHD in Europe is based primarily on a small subset of European countries. Finally, this manuscript does not cover unmet needs of all subsets of adults with ADHD, for example., the adult’s role in family life, who may benefit from focused strategies or programs. Five-year view

Relaxing the DSM-5 criteria likely will not have a significant impact on adult ADHD diagnosis rates. Sceptical physicians 808

likely will still remain sceptical about adult ADHD as a medical condition. These physicians may only view this change simply as a broadening of the original criteria. For patients, the DSM-5 is unlikely to impact significantly on the delays experienced in receiving a diagnosis and treatment. Nevertheless, given the continued research activities in adult ADHD and the wide-reaching initiatives of ADHD-specific clinical, scientific and advocate organizations in the EU (e.g., the European Network Adult ADHD, the European Network for Hyperkinetic Disorders, the UK Adult ADHD Network, and the World Federation of ADHD), understanding of adult ADHD will greatly increase in the next 5 years in Europe; by 10 years, it will be well understood, but this will vary considerably by country/region. Currently, there are several guidelines on the diagnosis and management of adult ADHD published by national or international medical societies or governmental bodies [95], and regions differ with respect to which they utilize most frequently. Guidelines for adult ADHD likely will continue to evolve, potentially highlighting findings from further research exploring gaps in current knowledge, including: optimal approaches for adolescent transition to adult ADHD healthcare services; understanding the specific role of psychology in ADHD care; understanding optimal approaches to integrating multi-modal care; outcomes associated with lack of treating mild ADHD without medication; and addressing adult ADHD within different contexts as discussed in this paper. In parallel, programs to aid adolescents in transition will increase. For example, guidance to universities has been developed in the UK that discusses support for young adults awaiting diagnosis, as this can be lengthy [96]. The transitional ‘cliff-edge’ experienced at age 18 has recently been targeted in the UK in mental health governmental policies with the hope that better continuity in services will result [97]. In the UK, ADHD, like dyslexia, is now considered a learning disability and accepted in support of an application for disabled students’ allowance and resources. The transition period is a landmark process where not only people come together, but also different service cultures and therapeutic approaches aiming to meet the patients’ needs. It is hoped that during this process and with clinical pharmacy input, disparities in medicines management will be addressed [24]. The development of Web forums and centralized resource centers accessible to large numbers of ADHD adults will help increase awareness and likely help adult ADHD be seen as a real condition. Also, the number of available treatment options will increase, including both those considered as controlled versus non-controlled medications. Relative to those currently available, new treatment options will have different profiles that may have certain advantages and disadvantages from the patient perspective. Evidence is growing supporting medication combined with CBT, but research is lacking on whether or not CBT alone is effective. Currently, large, multi-center initiatives Expert Rev. Neurother. 14(7), (2014)



are underway in Europe focusing on CBT, which likely will help in making it more accessible. As increasing numbers of ADHD patients in their late teens are being referred to GPs, the role of GPs in adult ADHD care will become larger overall and with respect to screening and managing patients, particularly those with no/minimal comorbid conditions. In tandem, there will be increasing numbers of adults with ADHD who are managed by specialist nurses working with GPs in a primary care setting or adult mental health. GPs will increasingly prescribe ADHD medication, particularly non-controlled medications. It likely will be found that adult ADHD may be managed well by general mental health services, similar to specialist centers. Similar to tools that have been developed for pediatric populations, ADHD may be incorporated in commonly used screening tools used in adults to differentiate from key comorbid condition, for example., generalized anxiety disorder, social phobia, depression and autism. Drug treatment centers, the criminal justice system, and psychiatric practices will increasingly screen for adult ADHD. Of course, these efforts will vary by region, both within and across countries. And in some areas, they have already been implemented. Conclusion

This paper provides a current and thorough review of unmet needs specific to selected ADHD subgroups in Europe and discusses strategies to help address them. Many such strategies need not be expensive or time consuming to implement, and they could be quite beneficial in accommodating the needs of adults with ADHD. Further research on the effectiveness of

Review

various strategies in each ADHD subgroup would be beneficial. Similarly, it would be useful to explore further how the economic impacts, particularly lost revenue, associated with adult ADHD compare to those associated with other mental health conditions, such as major depressive disorder or bipolar disorder. Despite the various challenges in the recognition of adult ADHD, clinicians and patients should not become disillusioned; rather, they should embrace adult ADHD as a complex condition, worthy of examination from many angles. In the same way that significant advances were made in the area of childhood ADHD in the past decade, similar advances can be made for adult ADHD once the challenges in diagnosis and treatment are acknowledged and addressed. Financial & competing interests disclosure

Y Ginsberg served as a primary investigator, consultant and speaker for Janssen-Cilag and Novartis, and as a speaker for Eli-Lilly and HB Pharma. K Beusterien works at ORS Health, which provides consulting services to Shire. K Amos is a subcontractor for ORS Health, which provides consulting services to Shire. P Asherson received honoraria for consultancy to Shire, Eli-Lilly and Novartis. P Asherson has received educational/research awards from Shire, Eli-Lilly, Novartis, Vifor Pharma, GW Pharma and QbTech. P Asherson has been a speaker at sponsored events for Shire, Eli-Lilly and Novartis. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending or royalties. No writing assistance was utilized in the production of this manuscript.

Key issues • Adults with ADHD experience substantial impairments in both personal and professional areas of life, but confront major challenges in obtaining adequate support and treatment. • Although numerous studies describe adult ADHD and its impacts, few have examined unmet needs in this population focused on Europe. • ADHD in adults often goes under recognized and untreated due to a lack of resources and qualified treatment professionals, misunderstandings about the lifelong nature of the disorder, and misdiagnosis due to comorbidities. • Even when ADHD is diagnosed in adults, they experience difficulty accessing appropriate resources, including support groups, cognitive behavior therapy, and physicians willing to prescribe medications. • Although the effectiveness of medications for adult ADHD has been demonstrated and replicated, there is high discordance between the numbers who are prescribed medication versus estimated prevalence rates. • Young adults, particularly those for whom ADHD is their primary diagnosis, transitioning from adolescent mental health clinics to adult providers often have difficulty meeting the criteria for acceptance to adult clinics. • Moreover, young adults with ADHD frequently are unable to access the same treatments (medication, support groups, cognitive behavior therapy) that were available throughout their youth. • Adults with ADHD commonly struggle with finding and maintaining employment and often have lower lifetime earnings than their peers; in addition, they are reluctant to disclose the diagnosis to their employers. • Employers lack understanding on the implications of ADHD and thus do not implement approaches such as enclosed workspaces, advanced notice, flexibility, and so on that could improve productivity and reduce frustrations. • ADHD among the incarcerated population is higher than the general population but often is undiagnosed or untreated even though it has been shown that treating ADHD in this population is associated with a reduction in criminality.


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