Int J Ment Health Addiction DOI 10.1007/s11469-013-9438-1

The Construction of the First Validated (Evidence Based) Guideline for Dual Diagnosis of ADHD and SUD; Data from Focus Groups Frieda Matthys & Peter Joostens & Steven Stes & Sabine Tremmery & Bernard Sabbe

# Springer Science+Business Media New York 2013

Abstract This study aims to obtain more information about the expectations and experiences of patients with attention deficit hyperactivity disorder (ADHD) and substance use disorder (SUD) and about the opinions of addiction care professionals. This information has been used to develop the first multidisciplinary guideline for identification and treatment of ADHD in addicted patients. Focus group interviews were performed with two groups of professionals and a group of patients of one of them. The interviews were transcribed and analyzed using QSR NVivo 9 software. The analysis revealed a great difference between addicted inpatients and outpatients as to the possibilities of diagnosing and treating ADHD. It is difficult to make a proper diagnosis in patients who are not fully abstinent, as there are no validated diagnostic instruments for this target F. Matthys Free University Brussels (VUB) and MSOC Free Clinic, Antwerp, Belgium P. Joostens Psychiatric Centre Broeders Alexianen, Tienen, Belgium S. Stes University Psychiatric Centre, Katholieke Universiteit Leuven, Leuven, Belgium S. Tremmery Department Child & Adolescent Psychiatry, University Hospitals Katholieke Universiteit Leuven, Leuven, Belgium S. Tremmery Department of Neurosciences, Katholieke Universiteit Leuven, Leuven, Belgium B. Sabbe Collaborative Antwerp Psychiatric Research Institute (CAPRI), University of Antwerp, Antwerp, Belgium B. Sabbe Free University Brussels (VUB), Brussels, Belgium B. Sabbe University Psychiatric Sint-Norbertus, Duffel, Belgium F. Matthys (*) Department Psychiatry, University Hospital Brussels and Free University Brussels (VUB), Laarbeeklaan 101, 1090 Brussels, Belgium e-mail: [email protected]

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group. Observation is seen as more important than questionnaires but there have been no studies on the utility of observation. Patients often ask for non-pharmacological treatment. Underdiagnosing of ADHD in addicted patients is a persistent problem. Additional research is required into diagnostic tools for making a proper diagnosis in patients not fully abstinent as well as into pharmacological interactions. Observation, degree of distress and cognitive examination should form part of the diagnostic process. The positive experiences in the residential addiction services with non-pharmacological well-grounded, structured treatment methods for addiction offer a perspective to develop specific methodologies adapted to patients with comorbid ADHD. Keywords Guideline . ADHD . SUD . Comorbidity . Attention deficit hyperactivity disorder . Substance use disorder . Qualitative research When attention deficit hyperactivity disorder (ADHD) persists in adulthood, youngsters have a 52 % chance of developing a substance related disorder (Biederman et al. 1995; Charach et al. 2011; Lee et al. 2011; Szobot et al. 2007). ADHD is present in almost one out of every four patients with substance use disorder (SUD) (van Emmerik-van Oortmerssen et al. 2012), as opposed to 1.5 to 4 % in the general population (Levin et al. 1998; Wilens and Biederman 2006). In spite of this, ADHD is rarely diagnosed in patients with SUD (Kessler et al. 2006). Little is known about the reasons for this phenomenon. In this qualitative study we investigated the experiences of patients and therapists with these comorbid disorders using different types of focus groups. The results were compared to the available research data in order to develop evidence based guidelines

Method Study Design and Sample This study originated within the Forum of Addiction Medicine of the VAD (Vereniging voor Alcohol- en andere Drugproblemen/Association for Alcohol and other Drug Problems). The VAD coordinates most of the Flemish organizations that deal with the issues of alcohol, illegal drugs, psychoactive medication and gambling. The focus group based study was part of a more comprehensive guideline development project for this particular dual diagnosis which comprised 1) mapping the observations, opinions and expectations of patients and therapists, 2) formulating recommendations for practical use and 3) formulating the obstacles preventing implementation of the guidelines and suggestions to overcome these obstacles. We took stock of the experiences of patients and therapists using the focus group method as outlined by Krueger (Krueger and Casey 2000). This allowed us to keep the content of the final guideline close to the actual needs and obstacles therapists and patients are confronted with and in this way it could probably facilitate the implementation of the future guideline. The call for participants in the focus groups was initiated by The Forum of Addiction Medicine. This forum was founded in 2004 and consists of 87 physicians (general practitioners and psychiatrists) working predominantly in an addiction treatment context. Only a minority of this group was familiar with ADHD. From this forum we recruited the participants for the professional focus groups that we organized for the study. The medical doctors who expressed their interest were asked to invite psychologists from within their professional environment who focus on ADHD. They also were asked to search for patients who fitted the intended profile for the patient focus group.

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In February-March 2009 two professional focus groups met three times for 1.5 to 2 h. The first meeting allowed the participants to vent the experiences they have had with the issue. The next two meetings were focused on diagnostics and treatment, respectively. One group consisted of medical doctors (n=13), the other of psychologists (n=8), all of them experienced in the domains of ADHD and addiction. The groups were heterogeneous in terms of gender, age, education, clinical experience and work environment (see Table 5). A third group consisted of addicted patients (n=6) who had been diagnosed with ADHD (Table 4) and were invited via the physicians from the physician focus group. This group managed to formulate all their opinions and ideas in a single 2.5 h meeting. Patients, physicians and psychologists from the same organizations were interviewed so that a nuanced view from different perspectives was created (Table 1). After having been informed about the goals of the project, all participants gave their consent to participate in the focus groups. Data Collection and Analysis Patients were asked questions about their experiences and satisfaction [Table 2] and could give suggestions to improve the diagnostic and therapeutic procedures. The practitioners were asked a number of initial questions [Table 3] about prevalence, diagnostics and treatment. All talks were moderated and recorded and transcribed afterwards. At the first focus group meeting of the physicians, two participants took written minutes due to equipment failure. The themes of the first gathering were used as a basis for the second and third meetings. This caused quite some repetition, but resulted in a more complete picture of the practitioners’ experience. For the analysis of the focus group data, the transcripts were axial coded and clustered using QSR NVivo 9. Axial coding is the act of relating categories to subcategories along the lines of their properties and dimensions. The goal is to systematically develop and relate categories (Strauss and Corbin 1998). The observations and opinions of the professionals were triangulated with the existing research findings, which were very sparse (Tables 4 and 5).

Results The Themes that Resulted from the Analysis The Patients’ Experiences Features of ADHD All participants mention the core symptoms of ADHD. The biggest burden is impulsivity and the difficulty in organizing oneself: “… I didn’t do anything Table 1 Focus groups and meetings Participants

Number of participants

Number of meetings

Group 1

Patients with ADHD and SUD

6

1

Group 2

GPs and psychiatrists educated in addiction medicine and with experience in ADHD

13

3

Group 3

Psychologists with experience in ADHD and SUD

8

3

Int J Ment Health Addiction Table 2 Initial questions for the patients’ focus group Which features of ADHD do you recognize in yourself and how do these present themselves? What do you think is the relation between ADHD and substance use? Did you seek help yourself or were you referred? When (in which phase of your life) were you diagnosed for the first time with ADHD? What kind of changes has the ADHD diagnosis created in your life, the treatment notwithstanding? What did you think of the different examinations (observation, history taking, etc.) you had to undergo before a diagnosis was established? Did you get sufficient information concerning ADHD and its treatment after the diagnosis? What are the different elements that constitute your treatment? What is your opinion about the quality and the utility of each of these elements?

anymore, but it seemed as if I was really busy…”. Some participants also mention inner tension as an important problem. Relation between ADHD and Substance Use Five out of six patients have experienced a positive effect from drugs on their ADHD symptoms: “amphetamines made me calm, same thing when I used heroin, then I was also able to relax much easier” and “with amphetamines, everything is very structured”, “if I used speed, I could remember [the orders of] this table, that table, and another table, without having to write anything down”. Three out of six also formulate the search for kicks as an important factor in the origination of their addiction. “I have always liked to become high. As a little girl I liked spinning my body in circles like a dervish or I sniffed liquid Tipp-Ex until I fell to the ground”. Experiences with the Diagnostic Examination The patients look back on this with mixed feelings. They express doubts about the competence of the medical doctors and felt a little like lab rats: “I sensed a wait-and-see attitude, as if they were really experimenting, let’s see how he’ll react to this”. The information they received is also a source of dissatisfaction: “… what really goes on inside your head, why amphetamines calm you down, while they make others go wild, they never really explained that to me”. Consequences of Receiving the Diagnosis Here the answers vary widely. Some feel relieved, free from guilt: “… it is good to know that you are actually not an unscrupulous bastard”. Some put more emphasis on the years they lost because the diagnosis came so late: “… shit, Table 3 Initial questions for the practitioners’ focus group Could you give a prevalence estimate of ADHD within your patient population? Do you think there is an overestimation or underestimation of ADHD in addicts? Which elements/concepts play an important role in the diagnostic process? What is specific and important in making the diagnosis of ADHD and what obstacles do you encounter? What is specific and important in treating ADHD alongside substance dependence? What obstacles do you encounter in treating ADHD in substance dependent patients? Did you receive additional training about these issues? Are your colleagues and team members aware of these issues? Which professionals are important in diagnosing and treating ADHD in (young) adults? Which questions and ambiguities concerning the combination of ADHD and addiction would you like to see resolved?

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Table 4 Demographic data of the focus group of patients

n (=6)

% or range

5 1

83 % 17 %

32

23–42

Gender Male Female Average age (Min-Max)

yeah, I’m almost 27 years old and only now do I get that diagnosis. I used to have such troubles at school”. One feels resolutely, “people start to look at you differently” and labeled “if you ask someone what someone with ADHD is like, it’s just a 6-year old who can’t sit still”; he doubts if the diagnosis is correct “it’s still recent, they can still be wrong”. Treatment Experiences All patients received long-acting methylphenidate. Only one of them is really satisfied with it. Some participants have complaints about blunting of their emotional life. “…I went on a trip around the world with my father right after coming out of the addiction center. I stood at the Mount Everest base camp. When my father is looking at the pictures on the computer, you can feel that he gets the feeling he had on vacation, and being there. I don’t have that, no matter how hard I try, I can’t recall that feeling”. Two patients find that the medication makes little difference in the long run. “In the morning I take the pill, but whether I do or not, it doesn’t make a difference”. All of the patients mainly have a need for coaching and guidance and find it hard to find a decent, non-medicinal treatment of their ADHD problems. They especially expect an increase in competence within addiction treatment, because they feel stigmatized in the regular mental health care system because of their addiction problems. “…the moment you start talking about a double diagnosis, you can leave ¾ of the psychiatric wards…”. Table 5 Demographic data of professionals participating in focus groups 1 and 2

n (=21)

% or range

Male (%)

8

38 %

Female (%)

13

62 %

42

26–56

Gender

Average age (Min-Max) Education General Practitioner

9

43 %

Psychiatrist

4

19 %

8 13.76

38 % 3–31

Psychologist Average years of practice (Min-Max)

Practice (more answers possible: n>21; %>100 %) Inpatient service

11

52 %

General Hospital

1

10 %

Psychiatric Hospital

6

31 %

In-patient addiction center

4

14 %

Outpatient service

15

71 %

Outpatient mental health service Outpatient medical-social service

1 10

3% 41 %

Private practice

4

19 %

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The Practitioners’ Observations and Opinions Prevalence of ADHD in Addiction Treatment The physicians (psychiatrists as well as general practitioners) have a clear view of the diagnostic distribution within their patient population, whereas the psychologists do not dare to make a guess about the frequency of the combination ADHD and SUD. Physicians estimate de prevalence of ADHD at around 10 % in their addicted outpatient population, and 25–30 % in the inpatient group. Despite earlier contacts with the health care system, patients had not received a diagnosis before entering into treatment. Because of this high prevalence, physicians are proponents of systematic screening. All practitioners are alert to feigned symptoms, since occasionally these patients only try to obtain stimulants. Still they think they regularly miss diagnoses, especially when attention deficit disorders are at the forefront. The practitioners believe that the diagnosis ADHD, predominantly the inattentive type, is easily missed because the behavior in these patients is less troublesome. They believe that this form is present more often in female patients. But a psychiatrist notes: “We can also miss the diagnosis in boys, when they’re mostly musing and absent”. The practitioners do not see ADHD more often in cocaine or amphetamine users than in users of other substances. They have the impression that addicts with ADHD are harder to keep in treatment and relapse more quickly into substance abuse than addicts without ADHD. Experiences with the Diagnostic Examination In the focus groups the practitioners produced less scintillating statements than the patients did. Psychologists and physicians (non-psychiatrists) from the outpatient facilities have little experience in recognizing ADHD in their addicted population. “We do not have enough time and there is a huge dropout“. All practitioners emphasize that comprehensive psychiatric diagnostics must take place not only because of the differential diagnosis, but also to detect any potential third comorbid disorder. “We always have to do a full psychiatric examination and not just looking for a specific diagnosis“. History taking can be impeded by mnestic dysfunctions that are commonly present in addicted patients. This can result in misdiagnosis. The use of informants, however essential, is often seen as difficult to achieve when patients have grown up in institutions or because they had severed relations with their families due to their substance use disorder. “Time of onset is a problem. How can we find this out in patients who have lost all contact with their families?” In the absence of such information, it is not possible to formally make the diagnosis. Although all therapists agree that the diagnostic examination must take place in an abstinent phase, there is no agreement on how long that abstinent period should be. The need for abstinence is an additional obstacle in outpatient settings where “most of the patients continue using alcohol or marihuana or tranquillizers”. The core symptoms of ADHD (impulsivity, impatience, missing appointments), which are enhanced by drug use, craving or withdrawal symptoms, make diagnosing in an outpatient context nearly impossible, precluding adequate treatment. On the other hand, the practitioners from the outpatient centers mention positive experiences with screening and diagnostics even though abstinence is not achieved. When limited and stable, drug use is not an obstacle, if the interview is focused on the drug-free periods and there is sufficient information from family and others who know the patient. The therapists from the inpatient sector, who can examine their patients during a longer lasting abstinent period in a structured setting, find observational data more important than

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questionnaires to obtain a diagnosis. “The number of diagnosed patients increases as you get to know the patients over longer periods; especially attention disorders become clearer”. “I see more and more patients with attention problems which become visible when the impulsivity and hyperactivity are gone”. “How long is their sustained attention in creative therapy? Can they wait their turn in a conversation or a board game? Can they remain seated during therapy? Can they organize their administration?” But also “Do they make a mess of their rooms? Can they organize the preparation of a meal?” Impulsivity as such is an unwieldy criterion: “… because the impulsivity remains disturbed up to 1 or 2 years after withdrawal”. The psychologists attach particular importance to observation during neuropsychological testing as well:”I think it is just fascinating, you can see the patient working a whole day. Maybe they don’t realize they have a problem but you can see the fluctuations in attention and the restlessness and impatience when it gets boring”. Finally the practitioners call “distress” an important designation for the dysfunction. Nonetheless they also recognize the risk of a simulated disorder. The overlap between ADHD symptoms on the one hand and intoxication, craving and withdrawal symptoms on the other, together with the fleeting contacts they have with these patients, hinder the diagnostic process and can cause both overdiagnosing or underdiagnosing: “What is the validity of the questionnaires in our population and how can a factitious disorder be distinguished?“Especially doctors working in outpatient settings fear stimulant abuse by their patients. The psychologists state that there is a lack of validated screening or diagnostic instruments for this specific group. That is why they have to make use of the instruments that exist for non-addicts. They generally have little faith in patient self-assessment. According to them this greatly increases the probability of false positives. Because neuropsychological tests cannot be found as diagnostic instruments in the literature, they mention a lack of more objective instruments to measure the impulsivity, the attention disorders, the distractibility and the organizational problems. Treatment Experiences The practitioners are very familiar with the medicinal treatment of ADHD. However, they lack the scientific data on their target group, especially on patients who are not completely abstinent or who relapsed into alcohol or drug use. Evaluating the effect of the medication is difficult if drug use is continued. Moreover, immediate release stimulants seem to increase the craving. Patients sometimes refuse medication because of a negative effect on their mood and a blunting of their affect, especially those who have already taken methylphenidate as a child or adolescent. Being able to face the world clearly and well-structured means that the patients have a harder time escaping the more difficult aspects of reality. They do not always experience this as an improvement. Extended release medication is considered to be safer and has better compliance. However, the high cost of long-acting medication is seen as a major obstacle, as in Belgium medication for ADHD in adults is not reimbursed by health insurance. In addition, methylphenidate treatment clashed with the philosophy of a drug free life as is propagated in the therapeutic communities. Physicians experience within their teams in these contexts resistance to the pharmacological treatment of ADHD: “But the physicians of the in-patient services have the impression that their patients with ADHD need medication to integrate in the group program. I think people are more open to therapy, more receptive to psychoeducation and cognitive behavior therapy when their ADHD symptoms are treated”. The practitioners from outpatient settings find their addicted patients with ADHD to be more cooperative in the addiction treatment if their ADHD is treated first. If the first use of

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the medication is postponed too long, patients tend to lose interest. “Most of the medication has addiction potential; if not, it takes a while to kick in with an exceptionally impatient target group”. No research on non-pharmacological treatment with their target group is known to the participants of the focus group. The participants of the focus group themselves find that the structured approach in addiction treatment fits the needs of the ADHD patient well. Diminishing the hyperactivity and impulsivity (using medication) is, however, often a requirement to be able to participate in the therapy, as it usually proceeds in a group. Furthermore there is a need for adjustments for those who have difficulty functioning within a group. When looking at the length of the sessions, the limited attention span of the ADHD patient must be taken into account. “Working together in a group with people with ADHD requires adaptation. They often have difficulty complying with the house rules. The others don’t accept that”. There is not always sufficient staffing for a more individual approach. Individual therapy is nonetheless essential for coaching, but also “working through mourning is very important, especially if the diagnosis is only made late”. Involving the family and those close to the patient in the treatment improves compliance, both in ADHD and in addiction issues. As the partner and the family gain more insight into the aspects of ADHD, the risk of relapsing when faced with problems of addiction, the mechanisms that play a role in this and the interaction between the two afflictions, they are able to more easily accept the patient and provide more adequate support to continue the treatment and to prevent relapse.

Discussion In this study we ascertained the experiences in diagnosing and treating ADHD in this population as mentioned by the therapists who are versed in it and by the patients themselves. These experiences were compared to the literature to construct the guidelines(Matthys et al. 2010) that have since been validated by CEBAM (Belgian Center for Evidence Based Medicine). The most important themes for patients are the lack of information and the fact that they are acutely aware of their doctor’s lack of experience with this issue. Contrary to expectations, they are generally not enthusiastic about pharmacological treatment and they especially articulate a need for psycho-education, structuring and guidance. Physicians have realistic ideas about the prevalence of ADHD in their population. Against the odds, they find ADHD no more frequently in users of amphetamine or cocaine than in users of alcohol and cocaine. Recent research has confirmed this finding.(van Emmerik-van Oortmerssen, et al. 2012) They are still concerned about both overdiagnosing and underdiagnosing. The risk of overdiagnosing is thought to be due to the overlap of symptoms between ADHD and SUD and because of possible aggravation or feigning of ADHD symptoms by patients who hope to benefit from the diagnosis. This risk has been confirmed in the literature. (Kalbag and Levin 2005) But precisely this fear increases the risk of underdiagnosis. The presence of symptoms at a young age is an important criterion for diagnosing ADHD. The diagnosis can be overlooked due to a lack of information from the early history (Levin and Upadhyaya 2007). If the attention disorders are at the forefront, the diagnosis is also easily overlooked. Clinicians find more patients with ADHD the longer they are abstinent, especially attention disorders becoming clearer. The focus group participants wrongly estimate these risks to be higher in women than in men. Studies have demonstrated

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that the diagnosis is easily missed when attention disorder is the main symptom in male patients as well. The patient’s ups and downs, persistent drug use and lack of cooperation make diagnosing in an outpatient setting almost impossible. However, ADHD is not an indication for hospitalization. In order to make a proper diagnosis of ADHD in not fully abstinent patients, the guideline recommends first seeking a stabilization of substance use (limited alcohol or cannabis use, no stimulants) and in the interview focusing on the drug-free periods. Observation is seen by the therapists in inpatient settings as the most important research tool, whereas the literature refers more to the use of questionnaires and semi-structured interviews. Observation offers the possibility to objectify the limited attention span, the organizational problems and the dysfunction in everyday life. There has been no research on the utility of observation. The instruments for screening and diagnosing ADHD have not been validated for this target group. The focus group participants believe that distress could be an important diagnostic criterion that has not yet been studied scientifically. Where treatment is concerned, the focus group participants point out some specific obstacles. Evaluating the effects of medication is difficult when drug use is still a factor (Wilens et al. 2005). Fear of medication abuse increases the probability of underdiagnosing and undertreating. They also have the impression that immediate-release methylphenidate increases the craving by its rapid but short effect. To our knowledge, no research exists on this subject Cognitive behavioral therapy, structured skill training and dialectic behavioral therapy have all proven to be effective in patients with an addiction problem (Kleber et al. 2006) as well as in patients with ADHD (Safren et al. 2005), (Langberg et al. 2008) and (Philipsen et al. 2007). Therefore one may assume that the same non-pharmacological treatments will also be effective in patients who have both disorders. These therapies are offered by the therapists from the focus groups to patients in the in-patients settings. Decreasing hyperactivity and impulsivity is, however, a requirement to participate in addiction treatment, since it usually takes place in a group context(Mariani and Levin 2007).

Limitations of the Study The information collected is not fully representative of the attitude towards ADHD in the field of addiction treatment in Flanders, since the focus groups consisted of a selection of interested therapists who had received additional education. The patient group is similarly biased, since they are all patients contacted by precisely these therapists. On the other hand, this differentiates and supplements the evaluation of the care process.

Conclusion The focus group participants, all of whom have clinical experience with ADHD in their addicted population, estimate a high ADHD prevalence in their patients with a substance use disorder, but experience a large number of problems in making the diagnosis. It is clear to them that it is easier to make the diagnosis when patients are abstinent long enough. This is almost impossible in an outpatient context. For screening and diagnostics they find questionnaires and interviews to be less useful than observation. There is a need for standardized instruments to objectify the symptoms,

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better ones than the very subjective self-assessment scales. In many patients with ADHD and SUD, ADHD cannot be diagnosed and as a result cannot be treated because they are too impulsive and too disorganized, which is part of their pathology. Underdiagnosing will therefore be a persistent problem, where the primary challenge is to get and keep the group of outpatients in care. Additional research into diagnostic tools based on observation, degree of distress and cognitive research is required. The results with methylphenidate and atomoxetine have been mixed. However, the participants in the focus groups expect more from non-pharmacological treatments; but there is often a lack of time and manpower for this approach. The positive experiences in the inpatient sector, with well-grounded, structuring treatment methods for addiction, offer a perspective to develop specific methodologies adapted to patients with SUD and comorbid ADHD.

Conflicts of Interest None.

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