Written by Cesar Soutullo, MD, PhD; Director, Child & Adolescent Psychiatry Unit, University of Navarra Clinic, Pamplona, Spain
Three steps to reach full remission and optimal functioning
After a diagnosis of attention-deficit hyperactivity disorder (ADHD) has been reached (see Part 1) – with all the possible comorbid diagnoses, associated cognitive and neuropsychological characteristics, and family, school and psychosocial factors considered – an individualised, evidence-based, problem-solving-focused, three-part treatment plan is developed:
1) Initial plan: identify needs, agree individualised treatment goals and achieve a response
2) Maintenance: monitor, re-assess and evaluate the response
3) Emerging issues: re-design the plan.
1. Initial plan: identify needs, agree individualised treatment goals and achieve a response
- European guidelines recommend that a multimodal treatment plan is developed and implemented for people with ADHD. It should include non-pharmacological interventions and the use of approved medication where required.1
- ADHD may impact one or more aspects of a patient’s life to varying degrees, including: educational outcomes, behavioural management, family life and social relationships, risk-taking, substance use, legal problems, employment prospects, personal finances and overall quality of life.2-17 Time and resources are required to minimise the impact of ADHD.
- It is key to identify the individual needs of the patient with ADHD, the needs of their family and the people close to them, and their potential treatment goals (target symptoms). Individualised treatment goals can then be developed to adequately address these needs.1,18,19
- However, a family or a patient may have a need that is not a suitable or realistic treatment goal or target symptom. Before treatment begins, clinicians need to clarify realistic goals and time frames for improvement.1 For example, while a family may be very focused on both academic achievement and behavioural control, it needs to be determined at the outset if the realistic goal of treatment is good grades or ‘perfect’ behaviour (not very realistic!), as it is unlikely that both can be achieved at the same time. The patient’s ADHD symptoms may improve in weeks, but if they have a history of academic failure, their grades will likely remain poor for a longer time. Such a scenario is not a treatment failure, but rather a failure to clarify what can be achieved in the initial treatment period.
- Another frequent scenario is that when the parents’ initial goal is achieved (e.g. the patient is now doing well in school, not getting notes from school for class interruptions etc), the parents claim that the child’s symptoms of ADHD have got worse. Usually, they have forgotten the initial problems and are focusing on a new problem or a second problem, which is now visible because the first issue has been solved. We call this situation a ‘moving target’. It is critical to have a detailed initial evaluation, and a commonly agreed set of treatment goals, so that once the first problem is solved, subsequent goals can be targeted.
Developing an individualised management plan
- Several challenging factors need to be considered when developing a multimodal treatment plan:1,19-22
- Patient characteristics (age, ADHD current presentation, comorbidities)
- Personal preferences of the patient and their family (e.g. unrealistic fears about medication, bias, etc)
- Individual needs of the patient (which may differ depending on their developmental stage, environmental expectations and demands, potential risks/benefits and their academic/professional goals)
- Indicators that medication should be included (e.g. age of patient, ADHD severity, availability of non-pharmacological interventions, evidence-based informed patient/family preferences)
- Type of medication (stimulant or non-stimulant). For children who require pharmacological treatment, the treatment of choice is generally a psychostimulant medication (methylphenidate); if the response or tolerability is inadequate, an alternative psychostimulant (lisdexamfetamine) may be prescribed. If a psychostimulant is unsuitable, not recommended or if the response and tolerability are suboptimal, atomoxetine (or guanfacine when available in Spain) should be considered.
- Pharmacological treatment is not indicated as first-line treatment for all children and adolescents, it should only be considered for those with severe symptoms and impairment or those with moderate impairment who have not responded sufficiently to other forms of treatment (psychoeducation, behavioural/occupational interventions and psychological treatment) or who have refused non-drug interventions.1,18-22
- With all these factors in mind, an individualised treatment plan should be developed and may include:1,18-23
1. Psychoeducation and parent training in behavioural management
2. Academic support
Implementing an individualised management plan
- After a treatment plan is initiated, if medication is prescribed, follow-up clinic visits need to evaluate adherence, safety and tolerability of the medication and response of target symptoms. It is also important to determine if the non-pharmacological interventions (e.g. parent behavioural intervention, academic support and changes at school, such as exam adaptation and special help from tutors) are in place and working.
In Spain it is now mandated by law to have special adaptations at school; not in the content of the exams and lessons, but in their format (i.e. shorter, clearer questions and more time in exams, and support in problem areas [e.g. maths, language, reading] etc), just as a child who is blind would need adaptations at school.
- It is necessary to monitor:
- Change in ADHD symptoms over time
- Fluctuations in symptoms during the day (from the parents’, child’s and teacher’s perspectives)
- Changes in comorbidity symptoms (oppositional defiance, tics, depression, anxiety, and substance use)
- Key tolerability items (sleep, appetite, tics, anxiety, mood and other symptoms, such as gastrointestinal or cardiac adverse events).19
- It is also important to periodically re-evaluate the alignment of the treatment goals to the current needs of the patient as they progress through the different stages of life.
- If a full response is achieved, the maintenance phase is reached.
2. Maintenance: monitor, re-assess and evaluate the response
- Once treatment goals are reached, this is – in theory – an uneventful phase.
- Minor adjustments to medication doses may be required if there is a mild reduction in symptom or impairment control; sometimes this is required as patients get older.
- This time can be used to reinforce psychoeducation and adherence so that both the child and parents understand that ADHD is a chronic condition that requires monitoring. This helps to build a good therapeutic alliance and is particularly important in adolescents and emerging adults.
- When an adequate response is achieved, in our experience, there are some issues that may arise:
- Sometimes, due to the fact that there is a solid response, other professionals (such as teachers) may tell parents that, “the child is so well that they don’t think they have ADHD”. This feeds into parents’ self-doubt and guilt about bringing the child to therapy or using pharmacological treatments (i.e. ‘medicating the child’ – a term that I would not recommend using). At this point, it is essential to remind parents of the initial problems and of the risks if treatment is discontinued
- After a sustained period of remission, international guidelines recommend periodically assessing the need for continuing medication.18 If a medication is to be discontinued, a period with low potential risk should be chosen. For example, we never stop medication at the beginning of the school year or mid-term; instead we try to do it during the summer, so there is no risk of academic failure if the symptoms return
- It is necessary to continue monitoring the patient’s height, weight, pulse and blood pressure.19 In Spain, parents and grandparents tend to worry a lot about weight and height, and we find that percentile graphs can be a very useful resource for putting minor reductions in weight into context. If height progression is an issue, we usually ask for a consultation with a paediatric endocrinologist.
Inadequate response or inadequate tolerability
- Depending on the cause of an inadequate response, the following factors should be considered when choosing an alternative medication:1,18,19
- Adherence to the medication, particularly if multiple doses are required
- Effectiveness of the medication
- Duration of action during the day (to take account of the times of the day when the child has an emergence of symptoms, functional impairment or problems)
- Onset of action (in days or weeks after the medication is started)
- Adverse-event profile of the medication
- Comorbidities (such as anxiety, mood or tics)
- Is a re-evaluation of the problem required? Sometimes, a lack of response arises due to an incomplete baseline evaluation.
3. Emerging issues: re-design the plan
- Often clinicians and parents get frustrated if, after a long period of good response (achieved with several steps and interventions), problems seem to emerge again.
- Some factors that may influence the re-emergence of symptoms include:
- Lack of adherence to medication, therapy, follow-up visits or academic support. Parents may feel things are going well, so they cancel visits, ‘forget’ to monitor medication intake or reduce academic support. This can cause a gradual deterioration, which may not be noticed until something happens
- Substance use, most frequently cannabis and alcohol
- Developmental factors in early adolescence. A gradual increase in the patient’s autonomy can result in the parents becoming less informed of how the child is progressing at school, who their friends are or if they are taking their medication
- New demands. As patients enter adolescence and go into secondary school, there are gradually more teachers involved, the level of complexity of their schedule may increase and the level of supervision can decrease. Teachers may expect the patient to manage their timetable and assignments and may reduce monitoring. At this point, it is necessary to remind parents and teachers that there is a two-year brain maturation delay in individuals with ADHD, so they may still need monitoring and supervision
- New comorbidities may arise that were not present at baseline (e.g. depression, anxiety, oppositional/conduct disorders).
- Clinicians need to re-design the treatment plan with the patient and parents.
- A good comprehensive baseline evaluation is key to the development of an individualised treatment plan.
- The treatment plan needs to be developed as a team by the parents, the patient and the clinician, and should consider the patient’s and parents’ needs and priorities. It also needs to be informed and evidence-based.
- Expect changes and anticipate difficulties during the course of the disorder; thus, the plan needs to be clear but flexible.
Disclaimer: The views expressed here are the views of the physician and not those of Shire.
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