Master thesis performed at: GHENT UNIVERSITY
UTRECHT UNIVERSITY
Faculty of Pharmaceutical Sciences
Faculty of Science
Department of Bioanalysis Unit of Pharmaceutical Care
Department of Pharmaceutical Sciences Pharmacoepidemiology and Clinical Pharmacology UPPER
ACADEMIC YEAR 2014-2015 ADHD MEDICATION ADHERENCE AND FACTORS ASSOCIATED WITH ADHERENCE IN ADOLESCENTS
Elke VAN PUYVELDE First Master of Pharmaceutical Care
Promoter Prof. dr. K. Boussery Co-promoter Prof. dr. M. Bouvy
Commissioners Prof. dr. T. De Beer Dr. Els Mehuys
Master thesis performed at: GHENT UNIVERSITY
UTRECHT UNIVERSITY
Faculty of Pharmaceutical Sciences
Faculty of Science
Department of Bioanalysis Unit of Pharmaceutical Care
Department of Pharmaceutical Sciences Pharmacoepidemiology and Clinical Pharmacology UPPER
ACADEMIC YEAR 2014-2015 ADHD MEDICATION ADHERENCE AND FACTORS ASSOCIATED WITH ADHERENCE IN ADOLESCENTS
Elke VAN PUYVELDE First Master of Pharmaceutical Care
Promoter Prof. dr. K. Boussery Co-promoter Prof. dr. M. Bouvy
Commissioners Prof. dr. T. De Beer Dr. Els Mehuys
Dr. Els Mehuys
ABSTRACT
Previous research has shown low adherence rates to attention-deficit/hyperactivity disorder (ADHD) medication among adolescents, while poor medication adherence is associated with poorer disease outcomes. It is important to identify factors associated with adherence to ADHD medication among adolescents to develop effective strategies to increase adherence. The aim of this research project was to study factors associated with ADHD medication adherence, in particular beliefs towards medicines and illness perceptions. A quantitative cross-sectional study was conducted using an online survey. Adolescent users of ADHD medication aged 12-18 years were selected in 68 Dutch community pharmacies (20-25 per pharmacy). Patients were invited through their own pharmacy by e-mail or a letter, accompanied by an information brochure. The online survey consisted of validated questionnaires such as the 5-item Medication Adherence Report Scale (MARS-5), the Beliefs about Medicines Questionnaire (BMQ) specific and the brief Illness Perceptions Questionnaire (IPQ) and questions about demographic characteristics, general health, use of medication, influence of parents and friends and lifestyle.
In total, 154 adolescents completed the online questionnaire of which 39.6% reported to be adherent (according to their MARS-scores). Respectively 13.0 % and 7.1% of the participants perceived strong necessity beliefs and strong concerns towards the use of their ADHD medication. Regarding the brief IPQ, high median scores were found on the items about timeline (7.0), treatment control (8.0) and illness comprehensibility (8.0), while low scores were achieved on the items about identity (1.0) and concern (2.0). A higher score on IPQ item ‘emotions’ was associated with higher rates of self-reported adherence and stronger concerns towards medication were associated with lower adherence rates. Forgetting to take medication was the most commonly mentioned reason for not using medication as prescribed. In the future attention should be given on strategies such as the development of a mobile application to reduce this forgetfulness and improve adherence to ADHD medication.
SAMENVATTING Voorgaand onderzoek heeft aangetoond dat therapietrouw bij adolescenten met attention-deficit/hyperactivity disorder (ADHD) laag is, terwijl slechte therapietrouw geassocieerd wordt met slechte behandelingsresultaten. Het is belangrijk om factoren die geassocieerd zijn aan therapietrouw te identificeren, teneinde effectieve strategieën te ontwikkelen om therapietrouw te bevorderen. Het doel van dit onderzoeksproject was het bestuderen van factoren geassocieerd aan therapietrouw, waarbij vooral de nadruk werd gelegd op opvattingen rond geneesmiddelen en ADHD. Een kwantitatieve cross-sectionele studie werd uitgevoerd waarbij gebruik gemaakt werd van een online vragenlijst. Adolescenten die ADHD medicatie gebruikten en die tussen 12 tot 18 jaar waren, werden geselecteerd in 68 Nederlands openbare apotheken. Patiënten werden uitgenodigd voor de studie door hun eigen apotheek door middel van een brief of een e-mail. De online vragenlijst bestond in de eerste plaats uit een aantal gevalideerde vragenlijsten zoals de 5item Medication Adherence Report Scale (MARS-5), de Beliefs about Medicines Questionnaire (BMQ) specific en de brief Illness Perceptions Questionnaire (IPQ) en daarnaast uit vragen over demografische karakteristieken, algemene gezondheid, invloed van ouders en vrienden, gebruik van geneesmiddelen en levensstijl.
De online vragenlijst werd door 154 adolescenten ingevuld, waarvan 39.6% een slechte therapietrouw aangaf. Amper 13.0 % van de deelnemers gaf aan een sterke nood te hebben aan hun ADHD geneesmiddelen en slechts 7.1% een sterke bezorgdheid omtrent neveneffecten van hun ADHD geneesmiddelen. Betreffende de brief IPQ werden hoge mediane scores gevonden bij de items ‘timeline’ (7.0), ‘treatment control’ (8.0) en ‘illness comprehensibility’ (8.0), terwijl lage scores werden aangetroffen bij de items ‘identity’ (1.0) en ‘concern’ (2.0). Een hogere score bij IPQ item ‘emotions’ was geassocieerd met een betere therapietrouw en een sterkere bezorgdheid omtrent geneesmiddelen was geassocieerd met een lagere therapietrouw. Vergeten nemen van medicatie was de meest vermelde reden om medicatie niet in te nemen zoals voorgeschreven. In de toekomst moet meer aandacht besteed worden aan strategieën zoals de ontwikkeling van een mobiele applicatie om deze vergeetachtigheid tegen te gaan en op die manier therapietrouw te verbeteren.
DANKWOORD
In de eerste plaats wens ik mijn promotor, Prof. Dr. Boussery, te bedanken voor het mogelijk maken van deze Erasmus-onderzoeksstage, evenals mijn co-promotor Prof. Dr. Bouvy. Ook mijn begeleiding in Utrecht, Dr. Ellen Koster en Drs. Daphne Philbert, wil ik van harte bedanken om me met raad en daad bij te staan en altijd open te staan voor mijn vragen. In tweede instantie gaat mijn dank uit naar de apothekers, stagiairs en keuzevakstudenten die meegewerkt hebben aan dit onderzoeksproject , zonder hen had ik dit nooit kunnen verwezenlijken.
Mijn ouders en familie mogen ook zeker niet vergeten worden. Hen wil ik danken voor het geloof dat ze in mij stelden en de financiële steun die ze me boden. Mijn vriend wil ik graag bedanken voor de vele uurtjes die hij gestoken heeft in het nalezen van mijn masterproef en zijn steun. Mijn flatgenoten, alle andere vrienden die ik in Utrecht gemaakt heb, mijn Belgische vrienden en Eva in het bijzonder, wens ik te bedanken om me nu en dan mijn gedachten eens te helpen verzetten en altijd klaar te staan voor mij.
CONTENTS
1.
INTRODUCTION..................................................................................................................... 1 1.1.
ADHD ....................................................................................................................................... 1
1.1.1.
Symptoms and comorbidity ............................................................................................ 1
1.1.2.
Diagnosis.......................................................................................................................... 2
1.1.3.
Treatment ........................................................................................................................ 2
1.2.
ADHD MEDICATION USE IN ADOLESCENTS ............................................................................. 5
1.2.1.
Trends in prescribing ....................................................................................................... 5
1.2.2.
Adherence ....................................................................................................................... 6
2.
OBJECTIVES........................................................................................................................... 9
3.
METHODS ........................................................................................................................... 10 3.1.
RECRUITMENT OF PHARMACIES AND PATIENTS .................................................................. 10
3.2.
DATA COLLECTION................................................................................................................. 11
3.3.
DEFINITION OF OUTCOME: ADHERENCE .............................................................................. 12
3.4.
FACTORS ASSOCIATED WITH MEDICATION ADHERENCE ...................................................... 13
3.4.1.
Beliefs towards medication ........................................................................................... 13
3.4.2.
Illness perceptions ......................................................................................................... 14
3.5. 4.
5.
DATA ENTRY AND DATA ANALYSIS ........................................................................................ 14
RESULTS.............................................................................................................................. 15 4.1.
RESPONSE RATE AND GENERAL CHARACTERISTICS OF THE STUDY POPULATION................ 15
4.2.
SELF-REPORTED ADHERENCE ................................................................................................ 16
4.3.
BELIEFS TOWARDS MEDICINES.............................................................................................. 16
4.4.
ILLNESS PERCEPTIONS ........................................................................................................... 18
4.5.
FACTORS ASSOCIATED WITH ADHERENCE ............................................................................ 18
DISCUSSION ........................................................................................................................ 20 5.1.
STRENGTHS AND LIMITATIONS ............................................................................................. 22
5.2.
FUTURE RESEARCH ................................................................................................................ 24
6.
CONCLUSION ...................................................................................................................... 25
7.
BIBLIOGRAPHY .................................................................................................................... 26
1. INTRODUCTION 1.1.
ADHD
Attention-deficit/hyperactivity disorder (ADHD) is a complex disorder and is presented with heterogeneity in terms of aetiology, clinical presentations and treatment outcomes. ADHD develops as a result of interplay between environmental and genetic factors, although the exact cause of ADHD is still unknown. Examples of potential environmental factors are pre-natal smoking, premature births, low birth weight, early neglect and exposure to certain toxins.(1, 2)
The disorder has been given numerous names in history such as ‘minimal brain dysfunction’, ‘hyperkinetic syndrome’, ‘hyperkinetic reaction of childhood’ and ‘attention deficit disorder (ADD) with or without hyperactivity’. Now the disorder is named ‘Attention Deficit/Hyperactivity Disorder’ when the Diagnostic and Statistical Manual of Mental Disorders, fourth (DSM-IV) or fifth edition (DSM-V) are used.(3, 4)
The worldwide prevalence of ADHD in children and adolescents is approximately 3.4%.(5) ADHD is mainly known as a psychiatric disorder that occurs in childhood, but often it continues into adulthood whereby the worldwide prevalence is estimated to be around 2.5%.(1, 6) Patients with ADHD are more likely to be male than female and children in the age group from 5 to 10 years show the highest prevalence. The prevalence of ADHD does not appear to vary much between nations and regions.(4)
1.1.1. Symptoms and comorbidity ADHD is characterized by symptoms of hyperactivity, inattention and/or impulsivity and three subtypes of ADHD exist. The first subtype is predominantly characterized by inattention. For example, persons diagnosed with this subtype often have trouble staying focused on tasks or play activities, are often easily distracted and are often forgetful in daily activities. In the second subtype the hyperactivity and impulsiveness are prominent. Persons 1
diagnosed with the second subtype for example often have trouble waiting for their turn, often talk excessively and often leave their seat in situations when remaining seated is expected. The third subtype is a combination of the first and second type.(7) Symptoms are clinically significant when
they cause
impaired
functioning such
as academic
underachievement, problems with behavioural functioning at school and disruption of relationships with family and peers.(4)
Comorbid disorders such as oppositional defiant disorders, conduct disorders, disruptive mood dysregulation disorders, specific learning disorders, anxiety disorders, major depressive disorder, substance use disorders, tic disorders and autism spectrum disorder, occur frequently in individuals with ADHD.(7)
1.1.2. Diagnosis To diagnose ADHD, diagnostic criteria of DSM-V (see appendix 1.) should be used. The DSM-IV and the text revision of this fourth edition (DSM-IV-TR) are still used to diagnose ADHD as well. ‘Hyperkinetic disorder’, diagnosed with the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10), is similar to the combined subtype of ADHD, but the criteria are more strict. During the evaluation of ADHD, attention should be paid to coexisting conditions and problems and special attention should be given to substance abuse, especially in adolescents.(8, 9)
1.1.3. Treatment At this moment, ADHD can not be cured, but the symptoms can be controlled and psychosocial functions and achievements in school and at work can be improved by both pharmacological and non-pharmacological treatment.(1) Recommendations for treatment of ADHD in the Netherlands are incorporated into the ‘NHG-Standaard ADHD bij kinderen’(9), which is similar to the clinical guidelines of the American Academy of Paediatrics (AAP)(10) and the National Institute for Health and Clinical Excellence (NICE).(11,
12)
The
recommendations of the NHG-standaard are only for children, while AAP guidelines are for children and adolescents and NICE guidelines are for children, adolescents and adults. 2
1.1.1.1.
Pharmacological treatment
The mechanism of action of most medication used to treat ADHD relates to the dopaminergic and noradrenergic dysfunction that is observed in the central nervous system of individuals with ADHD.(1) Medication approved by EMA for the treatment of ADHD are methylphenidate, dexamphetamine and atomoxetine. Other not approved medications used to treat ADHD are bupropion, clonidine, modafinil and antidepressants.(12)
Stimulants: Methylphenidate and Dexamphetamine
Methylphenidate is the most frequently prescribed medication for ADHD. It has a stimulating effect on the central nervous system by increasing extracellular levels of dopamine. Increased levels are obtained by blocking the reuptake of dopamine into the presynaptic neuron. Immediate release preparations and extended release preparations are available. No evidence of a difference in efficacy and side effects between immediate release and extended release preparations has been found, but extended release preparations demand only one intake per day, making them more user friendly. Methylphenidate is licensed for the treatment of ADHD in children from 6 years old and adolescents. (1, 13, 14)
Dexamphetamine is also a central nervous system stimulant. It’s the right-handed enantiomer of amphetamine. Dexamphetamine is indicated in children from 6 years old and adolescents when an insufficient response to methylphenidate is observed. In the Netherlands only a pharmaceutical compounding with dexamphetamine is available.(13, 14)
Short-term benefits of stimulant medication in the management of ADHD symptoms have been proven. Because the lack of research on long-term outcomes (more than two years) and mixed findings of the studies that exist, it is not completely clear how much these shortterm effects translate into long-term benefits to academic performance and/or social and emotional wellbeing. Only a few studies such as the Western Australian Pregnancy Cohort (Raine) study and the Multimodal Treatment of Attention Deficit Hyperactivity Disorder 3
(MTA) study have been conducted to investigate long-term effects of stimulant medication, but research findings have been inconsistent. Some studies have found long-term academic benefits while other studies have indicated no effect of stimulant medication on the longterm outcomes of children with ADHD.(15, 16)
Most common adverse effects of stimulants are sleeping problems, headache, nervousness, loss of appetite and abdominal pain.(10, 13) Studies have shown that stimulants cause a statistically significant increase in blood pressure by approximately three to four mmHg and heart rate by approximately five beats per minute. These increases are considered as having no clinically meaningful effect. Most studies have investigated the cardiovascular effects of stimulant medication over a period ranging from a few hours to weeks, long-term cardiovascular effects of psychostimulants are still unclear.(15) Effects of stimulant medication on growth measures have been widely studied as well. Psychostimulants are associated with a ‘less than expected’ growth trajectory for both height and weight during childhood and adolescence, but the effect was found to be small and is often interpreted as not clinically meaningful. It remains unclear whether final adult height is affected.(12, 17)
Atomoxetine
Atomoxetine is a non-stimulant and acts by increasing extracellular levels of noradrenalin by inhibition of the reuptake of noradrenalin. Because atomoxetine is a relatively new product, the evidence base that supports it is smaller than that for stimulants. Long-term safety and efficacy of atomoxetine has not been studied extensively yet. Atomoxetine has a proven efficacy in reducing core symptoms of ADHD. However, two studies that compared extended release methylphenidate and atomoxetine have concluded that extended release methylphenidate is more efficacious for core ADHD symptoms such as hyperactivity, inattention and impulsivity.(12) Because there is more experience with methylphenidate as well as its lower price, methylphenidate remains the first line treatment in children and adolescents with ADHD. Atomoxetine is indicated for children and adolescents from 6 years old, who respond insufficiently to methylphenidate, display intolerable side effects when
4
taking psychostimulants or when there is stimulant misuse. It is also licensed for the initiation treatment of ADHD in adults. Most common adverse effects are initial somnolence, gastrointestinal tract symptoms and decrease in appetite.(1, 10, 13, 14)
1.1.1.2.
Non-pharmacological treatment
Non-pharmacological treatments include behavioural parent training, behavioural classroom management, behavioural peer interventions and diet.(1, 10) A variety of studies have found positive effects of behavioural therapy when combined with pharmacological treatment, thus combination of those two is preferable.(10)
1.2.
ADHD MEDICATION USE IN ADOLESCENTS
1.2.1. Trends in prescribing During 1993 to 2003, the global usage of ADHD medications increased 274 percent. The U.S. remains by far the world’s largest consumer of ADHD medications, although only a little difference exists in the prevalence of ADHD between the United States and other countries. Possible explanations for the overall trend of increased use may be the increased recognition and treatment of ADHD by child and adolescent mental health and paediatric services, the increased marketing and the increased availability of drugs to treat ADHD. There has been a shift in the medications used to treat ADHD as well. Before 1999 the volume of short-acting medications reached a plateau and after 1999 the volume steadily decreased, which is related to the approval of long-acting formulations of methylphenidate and non-stimulant atomoxetine.(11, 18)
Studies conducted in a few European countries and the U.S. have shown that the prescription rates peak between 10 and 14 years, and between 15 and 21 years a decline is noticeable. A reason for this decline may be that adolescents normally finish their secondary education at this age and they may have less need for sustained attention and control over hyperactive–impulsive behaviour. Other possible reasons are that adolescents themselves
5
have greater autonomy in making decisions about their health care or that the symptoms may have diminished.(11, 19-21)
1.2.2. Adherence The World Health Organization (WHO) defines adherence as ‘the extent to which a person’s behaviour corresponds with agreed recommendations from a healthcare provider’.(22) Compliance is defined as “the accurate observance by a patient of a prevention or treatment regimen set out by a health professional”. Compliance and adherence are often used interchangeably, but we have used adherence because it focuses on whether a person adheres to the regimen rather than passively follows the doctor’s orders and implies collaboration between the patient and the health professional.(23)
Non-adherence can be divided in unintentional and intentional non-adherence. Factors that cause unintentional non-adherence can be poor memory (forgetting to take medicines), poor user-friendliness or cost of medicines. Intentional non-adherence reflects the beliefs of a patient and their decision-making abilities and often involves drug holidays at weekends or during school holidays.(11, 14)
Especially in chronic illnesses, non-adherence is common. Previous studies have already shown a high level of medication non-adherence among children and adolescents with ADHD. Non-adherence was reported to range from 13.2% to 64%. The prevalence of nonadherence was found to depend on the clinical setting, definition and assessment of adherence, duration of study, and characteristics of the study population. (24, 25)
Non-adherence is more often reported in adolescents and young adults compared to children, where the parents play an important role in helping their children manage their medication taking.(11) Adolescence is a crucial time for physical maturation, development of cognitive skills and psychosocial changes such as formation of identity and the development of independent social relationships. Having a medical condition during these years can complicate this process and teenagers may struggle to incorporate a medical condition into their developing identity, which can lead to non-adherence. Non-adherence can be a result 6
of a way of testing limits or it may be a way of confronting the authority of parents and professionals. Adolescents also do not want to be different from their peers and especially want to be accepted by their peer group, which can lead to denial or hiding their illness from peers, which mostly has a negative impact on the adherence. Other factors regarding adolescence that may influence adherence are avoidance of responsibilities and attention seeking.(23)
In general poor medication adherence or non-adherence is associated with poorer outcomes such as increased morbidity and medical complications, poorer quality of life and an overuse of the health care system.(23, 26) Specifically for ADHD, the consequences of medication non-adherence have been studied insufficiently, although some evidence has found that non-adherence has a negative impact on clinical and functional outcomes. Two studies have shown an association between stimulant adherence and greater treatment outcomes, although limitations seen in these studies prevent strong conclusions.(27),(28) Further research is necessary to examine whether these findings are replicated in other clinical and cultural settings.(25)
Especially qualitative studies have been conducted about beliefs and attitudes toward ADHD medication and adherence in adolescents with ADHD.(14, 29) Horne and Weinman have shown that the beliefs of a patient about their treatment can be a significant predictor of adherence to that treatment.(30) Regarding beliefs toward medicines, studies have shown that people have beliefs about medicines in general and beliefs about medicines prescribed for specific illnesses such as ADHD. It is thought that beliefs about medicines in general influence the patient’s initial orientation toward medicines, while adherence is more likely to be influenced by patient’s views about the specific prescribed medication. Beliefs about specific medication can be grouped under two core themes: beliefs about necessity and concerns towards use of medication. Adherence decisions are influenced by a cost–benefit evaluation in which beliefs about the necessity of the medication are balanced against concerns towards use of medication.(30)
7
Previous studies have already reported a variety of factors associated with medication non-adherence in ADHD. Demographic characteristics that have been found as factors associated with non-adherence are male gender(31), older age(31-36), living in East Asia (compared with central Europe)(25) and ethnic minorities.(36, 37) Medication-related factors that are associated with non-adherence are frequent daily dosing(31-33,
38)
and adverse
effects.(38) On the other hand, concomitant medications are associated with better adherence.(31) Once daily formulations (extended release) are more likely to be taken consistently than immediate release formulations. Immediate release formulations require multiple doses daily for efficacy, which has a negative impact on the ease of use and in its turn on adherence.(39) ADHD-related factors such as later diagnosis of ADHD(33), greater(33) or lower(35,
36)
symptom severity have also been associated with non-adherence. Another
reported ADHD-related factor associated non-adherence was oppositional or defiant behaviour(35, 38). Family-related factors that have been found as factor associated with nonadherence are poor family support(32), family history of ADHD(25, 33), poor parental perceived psychosocial benefits of medication(40), paternal emotional problems(25), no other children living at home(25) and maternal psychological distress.(32) Another reported factor associated with non-adherence is social stigma.(38) Some individuals reported to feel embarrassed with having to take medication in public and that there is a social stigma attached to having a psychiatric condition requiring treatment. Social stigma can be a particular problem for children and adolescents when they are at school, because it may lead to problems of teasing or bullying by the child’s peer group.(38)
8
2. OBJECTIVES For chronic diseases, adherence rates are known to be relatively low, especially in adolescent patients, while poor medication adherence is associated with poorer disease outcomes.(23, 26) Previous studies have shown this is also true for patients with ADHD.(24, 41, 42) The worldwide prevalence of ADHD in children and adolescents is approximately 3.4%, therefore ADHD is a relatively common disease in adolescents.(5) Only a few studies have addressed adherence to ADHD medication in adolescents. Associations between beliefs towards medicines and adherence, as well as illness perceptions and adherence have thus far only been studied in qualitative studies yet.(14, 29) It is important to identify factors associated with adherence to ADHD medication in a large group of adolescents to develop effective strategies to increase adherence.
The aim of this research project was to evaluate ADHD medication adherence, explore reasons for not using ADHD medication as prescribed and to study factors associated with adherence in adolescents aged 12 - 18 years. Our focus was on the association between beliefs towards medicines, illness perceptions and self-reported adherence.
A quantitative cross-sectional study was conducted using an online survey. Patients were selected in Dutch community pharmacies based on their medication use (methylphenidate, dexamphetamine and atomoxetine) and age (12-18 years). Patients were invited through their own pharmacy by e-mail or letter. The invitation e-mail or letter was accompanied by an information brochure with information about the study and a link to the anonymous online survey. The online survey consisted of questions about demographic characteristics, general health, medication use, adherence, beliefs towards medicines, illness perceptions, influence of parents and friends and lifestyle. Factors such as demographic characteristics, medication-related factors, parental support, lifestyle, illness perceptions and beliefs towards medication were studied in relation to adherence using logistic regression. First, univariate analysis was conducted, afterwards multivariate analysis was performed to adjust for possible confounding covariates
9
3. METHODS This cross-sectional study was conducted in compliance with the requirements of the UPPER Institutional Review Board (IRB) of the Division of Pharmacoepidemiology and Clinical Pharmacology of Utrecht University.
3.1.
RECRUITMENT OF PHARMACIES AND PATIENTS
The study was performed in Dutch community pharmacies belonging to the Utrecht Pharmacy Practice network for Education and Research (UPPER).(43) This network consists of approximately 1400 community pharmacies that frequently participate in research and traineeships for pharmacy students of Utrecht University. Pharmacies belonging to this network received an e-mail invitation. Pharmacies that were willing to take part in the study were asked to respond to the e-mail invitation. The pharmacies that responded were contacted and an appointment for a pharmacy visit is made by a pharmacy student. Furthermore 38 pharmacies who supervised a trainee (Master student of Pharmacy at Utrecht University) participated in the study as well.
Patients aged between 12 and 18 years were selected based on their ADHD medication use: methylphenidate, dexamphetamine and atomoxetine. Medication was selected based on the Anatomical Therapeutic Chemical (ATC) codes. The Anatomical Therapeutic Chemical (ATC) classification system is used to divide active substances into different groups according to the organ or system on which they act and their therapeutic, pharmacological and chemical properties.(44) The included ATC codes are listed in Table 1.3. Medication for ADHD can also be used in patients with narcolepsy. However, the prevalence of narcolepsy is low in this age group. An extra question was added to the questionnaire to exclude patients with narcolepsy. Only patients who filled a prescription for ADHD medication after January 1st 2015 and who presented and filled at least two prescriptions for ADHD medication in the previous year were invited in the study.
With the help of an e-mail or letter (see appendix 2.) patients were invited through their own pharmacy. If an e-mail address of the patient or parent was present and if the 10
pharmacist gave his permission to use this e-mail address, an e-mail was sent. Otherwise a letter was sent to the (parental) address of the patient. The invitation e-mail or letter contained an information brochure (see appendix 3.) with information about the study and a hyperlink to the anonymous online survey. Data were collected between 27 March 2015 and 20 May 2015.
Table 3.1: ATC codes of ADHD medications included in the study Medication
ATC code
Methylphenidate
N06BA04
Dexamphetamine
N06BA02
Atomoxetine
N06BA09
Assuming that for each possible predictive factor 15 participants were needed, 180 (= 15 x 12) questionnaires should be completed. We expected a response percentage of approximately 15%. To acquire at least 180 completed questionnaires, at least 1200 invitations had to be sent. Therefore, we aimed to send 20 invitations (if 20 patients were available that met the inclusion criteria) per pharmacy in the 38 pharmacies that supervised a trainee, and 25 invitations (if 25 patients were available that met the inclusion criteria) in the pharmacies that responded positively to the e-mail invitation to this study.
3.2.
DATA COLLECTION
The invited adolescents were requested to complete an online questionnaire. This online survey consisted of a number of validated questionnaires supplemented with questions that were developed by the researchers. Most of these questions have already been used in previous studies by UPPER. The questionnaire is added in the appendix (see appendix 2) and contained the following topics:
Permission to use their information in the research project/agreeing to participate
Reason for declining participation (if applicable)
Social demographic data such as age, gender, level of education and origin 11
General health, symptoms, illness perceptions (brief IPQ)
Used ADHD medication, used medication for other indications, adverse effects, medication benefits, reasons to be non-adherent, adherence (MARS-5) and beliefs towards medicines (BMQ specific)
Lifestyle: smoking, alcohol use and sport
Influence of parents and friends
3.3.
DEFINITION OF OUTCOME: ADHERENCE
Self-reported adherence was measured by the 5-item Medication Adherence Report Scale (MARS-5).(30) The MARS-5 is a validated instrument, which shows good inter-item correlation and good test-retest reliability.(45, 46) The MARS-5 consists of 5 items about medication taking behaviour including forgetting to take medication, altering the dose, deciding to miss a dose, taking less than instructed and deciding not to take medication for a while (see appendix 4.3.5.). Thus the scale assesses both unintentional and intentional non-adherence. The MARS-5 has been validated and used in a variety of populations and across multiple diseases(42, 47-50), ADHD as well.(51) The MARS-5 has also been translated and validated in Dutch.(42)
Participants had to indicate at a five-point Likert scale to what extent they agree with the items. The five-point scale ranged from never (5 points) to always (1 point) and the sum score ranged from 5 to 25 where higher scores indicate higher levels of adherence. To dichotomize the data, a cut-off value of 23 was used. Adherence of patients with scores of 23 and higher was considered as high, while adherence of patients with scores below 23 was considered as low. There is no golden standard for dichotomizing the data, but a higher cutoff point is recommended to exclude social desirability bias.(42, 48) A cut-off of 23 has already been used in other studies as well.(42, 49, 50) A sensitivity analysis was conducted whereby different cut-off scores were used. In addition to the MARS-5, an extra question to explore reasons to be non-adherent was added to the survey whereby options such as forgetting to take medication, only using when it is necessary and experience of side effects were given (see appendix 4.3.7.).
12
3.4.
FACTORS ASSOCIATED WITH MEDICATION ADHERENCE
Factors that were studied can be classified in six groups: demographic characteristics, medication-related factors, parental support, lifestyle, illness perceptions and beliefs towards ADHD medication. Demographic characteristics included gender, age and education level. Education level was classified in higher general secondary, medium general secondary, lower vocational, special and other. Medication related factors that were studied in relation to adherence are duration of the treatment and the experience of adverse effects. Lifestyle included smoking, alcohol use and sports. The definition of medication and illness beliefs are discussed in more detail in the next paragraphs.
3.4.1. Beliefs towards medication The Beliefs about Medicines Questionnaire (BMQ) specific is used to determine the participants’ beliefs about their specific medication, in this case ADHD medication. Beliefs about medication can be grouped under two core themes: necessity beliefs and concerns towards use of ADHD medication. The BMQ specific has been validated in different populations(30, 52) and has been widely used in other studies before.(47, 49, 50, 53, 54)
The BMQ specific consists of two five-item scales. The first five-item scale assesses beliefs about necessity and the second one concerns towards use of ADHD medication (see appendix 4.3.12.). Participants had to indicate to what extent they agree with each individual item on a five-point scale, ranging from strongly disagree (1 point) to strongly agree (5 points). The sum scores for both scales ranged from 5 to 25. To interpret the score easily, the score was dichotomized using scale midpoint as cut-off value. Scores greater than scale midpoint and thus total scores greater than 15 were considered as strong beliefs. To determine the balance between perceived benefit and costs associated with prescribed medication the necessity–concerns differential was calculated. The necessity–concerns differential is the difference between total necessity and concerns scores and thus range from -20 to 20. If the difference is positive, the patient perceives more benefits of medication than costs. If it is negative, the opposite is true.
13
Beliefs towards medicines were classified in four attitude groups as well: sceptical (highly concerned and poor necessity beliefs), ambivalent (highly concerned and strong necessity beliefs), accepting (poor concerns and strong necessity beliefs) and indifferent (poor concerns and poor necessity beliefs). A scatter plot was made whereby the X-axis and Y-axis represented respectively total needs and total concerns and midpoint of the scales (15) was taken as origin. The four attitude groups were represented in the four quadrants of the scatter plot.
3.4.2. Illness perceptions Illness perceptions were assessed using the brief Illness Perceptions Questionnaire (IPQ), which is a questionnaire that consists of nine items aimed to assess cognitive and emotional illness ideas of their disease. Only the first eight items were used in the survey (see appendix 4.2.3.). The instrument has been shown to have sufficient test-retest reliability and good predictive validity and has already been used in other studies.(55),(47),(49) Each item is rated on a scale from 0 to 10. The brief IPQ consists of three components: cognitive illness representations (consequences, timeline, personal control, treatment control and identity), emotional representations (concern and emotions) and illness comprehensibility. Each individual item of the brief IPQ was studied in relation to ADHD medication adherence.
3.5.
DATA ENTRY AND DATA ANALYSIS
The online questionnaire was directly entered in Lime Survey (a data entry program) by the patient. For the analysis, the data were exported to IBM SPSS for windows version 20.0. First, descriptive statistics, frequencies, means and medians, were calculated. Further factors were studied in relation to adherence as (dichotomous) outcome using logistic regression. First, univariate analysis was conducted to study individual factors in relation to adherence and crude odds ratios, their corresponding 95% confidence intervals and two-sided p-values were measured. Afterwards multivariate analysis was performed on covariates that were selected by backward elimination to adjust for possibly confounding covariates and adjusted odds ratios, their corresponding 95% confidence intervals and two-sided p-values were calculated. 14
4. RESULTS 4.1. RESPONSE RATE AND GENERAL CHARACTERISTICS OF THE STUDY POPULATION In addition to the 38 community pharmacies who supervised a trainee, 30 other community pharmacies agreed to participate after sending the e-mail invitation, whereas altogether 1297 adolescents were selected and received an invitation letter. In total, 154 persons (11.9% response rate) participated in the study and completed the online questionnaire. Twelve adolescents actively declined participation (by filling out a short nonresponse questionnaire), reasons for declining were considering the questions as too difficult, not feeling like, having no time, having no interest in the subject, having comorbid disorders such as intellectual disability that prevent properly filling in the survey and still being in the initial phase of the treatment.
The general characteristics of the study population are shown in Table 4.1. In total, 64.3% of the responders were males and the mean age was 14.2 (SD: 1.7) years. All the participants were of Dutch origin, except a Taiwanese person, a Belgian person and an English person. The educational level of the majority of the participants was medium general secondary (27.9%) and lower vocational (36.4%).
Table 4.1: general characteristics of study population (n=154) %(n)
Male gender Age, mean (SD) Dutch ethnicity Education level Higher general secondary Medium general secondary Lower vocational Special Other
64.3% (99) 14.2 (1.7) 98.1 (151) 18.8 (29) 27.9 (43) 36.4 (56) 3.2 (5) 13.6 (21)
15
4.2.
SELF-REPORTED ADHERENCE
Median score of self-reported adherence as determined by the MARS was 22.0 (IQR: 3.3) and the scores ranged from 10.0 to 25.0. Using a cut-off value of 23, 39.6% of the participants were considered as adherent. Only 7.1% (11 subjects) reported complete adherence on the MARS questionnaire (score of 25). The lowest score (median: 4) was reached on the first item of the MARS about forgetting to take medication. In addition to the MARS-5 questionnaire, reasons for non-adherence were further explored (Table 4.2). The most common given reasons to be non-adherent were ‘only taking medication when needed’, ‘forgetting to take medication’ and ‘experience of side effects’.
Table 4.2: Reasons to be non-adherent % (n) Forgetting to take medication
24.0 (37)
Only using when it is necessary
16.2 (25)
Experience of side effects
11.7 (18)
Not feeling themselves when taking medication
9.7 (15)
Dislike of medication in general
3.2 (5)
Experience insufficient benefit
1.9 (3)
Experience difficulties to take medication (more times) per day
1.9 (3)
4.3.
BELIEFS TOWARDS MEDICINES
Median score of the BMQ necessity scale was 11.0 (IQR: 4.3) and the scores ranged from 5.0 to 23.0. Only 13.0 % (20 subjects) of the participants reported strong necessity beliefs. Median score of the concern scale was 9.0 (IQR: 5.0) and the scores ranged from 5.0 to 19.0. 7.1% (11 subjects) of the participants had strong concerns about the side effects of their ADHD medication. The median score of the necessity–concerns differential was 1.5 (IQR: 5.3) and the scores ranged from -11.0 to 12.0. 61.7 % (95 subjects) of the participants had a positive necessity–concerns differential value and thus perceives more benefits of medication than costs. 16
Respectively 6.5% (10 subjects), 0.6% (1 subject), 12.3% (19 subjects) and 80.5% (124 subjects) were classified as sceptical, ambivalent, accepting and indifferent (Figure 4.1). Accepting users were associated with statistical significant higher adherence rates compared to indifferent users (OR: 12.4, 95% CI: 1.3-118.3, p=0.03).
Ambivalent: 0.6% Adherent: 100.0%
Concerns
Sceptical: 6.5% Adherent: 10.0%
25
20
Needs 15 5
10
15
20
25
10
5
Indifferent: 80.5% Adherent: 38.7%
Accepting: 12.3% Adherent: 57.9%
Figure 4.1: Scatter plot of the necessity and concern scores of the BMQ specific. Attitude groups, number of patients in each attitude group and percentages of patients of the attitude group that are considered as adherent are represented in the scatter plot as well.
17
4.4.
ILLNESS PERCEPTIONS
Median scores and corresponding interquartile ranges (IQR) are shown in Table 4.3. High median scores were found on the items ‘timeline’ (7.0), ‘treatment control’ (8.0) and ‘illness comprehensibility’ (8.0). Low median scores were achieved on the items ‘identity’ (1.0) and ‘concern’ (2.0).
Table 4.3: Median scores of the first 8 items of the brief IPQ Median (IQR) Cognitive illness representations Consequences
6.0 (3.0)
Timeline
7.0 (4.0)
Personal control
5.0 (4.0)
Treatment control
8.0 (2.0)
Identity
1.0 (4.0)
Emotional representations Concern
2.0 (3.0)
Emotions
5.0 (5.0)
Illness comprehensibility
4.5.
8.0 (4.0)
FACTORS ASSOCIATED WITH ADHERENCE
The results of the univariate and multivariate analysis are shown in Table 4.4. A higher score on IPQ item ‘emotions’ was associated with higher rates of self-reported adherence (adjusted OR: 1.2, 95% CI: 1.0-1.3, p<0.01). Stronger concerns towards medicines were associated with lower adherence rates (adjusted OR: 0.9, 95% CI: 0.8-1.0, p=0.03).
18
Table 4.4: Factors associated with self-reported adherence. Characteristics Demographic Male gender Age Education level Higher general secondary Medium general secondary Lower vocational Special Medication-related factors Duration treatment Experience side-effects Illness perceptions Consequences Timeline Personal control Treatment control Identity Concern Emotions Illness comprehensibility Beliefs towards medication Necessity beliefs Concerns Parental support Lifestyle Smokers Alcohol users Sporters
Adjustedb OR (95% CI)
Crude OR (95% CI)
p
p
0.6 (0.3-1.2) 0.9 (0.7-1.0)
0.15 0.14
0.7 (0.3-1.4) 0.9 (0.7-1.1)
0.29 0.38
REF 0.6 (0.2-1.6) 0.7 (0.3-1.8) 0.8 (0.1-5.7)
REF 0.29 0.51 0.84
REF 0.6 (0.2-1.5) 0.7 (0.3-1.8) 0.6 (0.1-4.6)
REF 0.26 0.48 0.64
1.0 (0.9-1.1) 0.9 (0.5 -1.7)
0.89 0.77
1.0 (0.9-1.1) 0.9 (0.4-1.7)
0.99 0.68
1.0 (0.9-1.2) 1.0 (0.9-1.2) 1.0 (0.8-1.1) 1.2 (1.0-1.5) 1.0 (0.9-1.1) 1.0 (0.8-1.1) 1.1 (1.0-1.2) 1.1 (1.0-1.2)
0.96 0.75 0.49 0.07 0.80 0.37 0.05 0.24
1.0 (0.8-1.1) 1.0 (0.9-1.2) 0.9 (0.8-1.1) 1.2 (0.9-1.4) 1.0 (0.9-1.1) 0.9 (0.8-1.1) 1.2 (1.0-1.3) 1.1 (0.9-1.2)
0.58 0.98 0.49 0.20 0.76 0.37 <0.01 0.46
1.1 (1.0-1.2) 0.9 (0.8-1.0) 1.4 (0.5-3.8)
0.23 0.14 0.56
1.1 (1.0-1.2) 0.9 (0.8-1.0) 1.0 (0.3-3.0)
0.22 0.03 0.98
0.6 (0.2-1.8) 0.4 (0.2-1.0) 1.2 (0.6-2.4)
0.37 0.05 0.67
0.6 (0.2-2.0) 0.5 (0.2-1.2) 0.9 (0.4-1.9)
0.44 0.14 0.81
b
Adjusted for illness perception ‘emotions’ and BMQ concerns
19
5. DISCUSSION Self-reported adherence rates among adolescents were found to be relatively low, according to the MARS-scores, only 40 % of the participants reported to be adherent. Necessity beliefs and concerns towards use of ADHD medication were found to be low as well, respectively 13 % and 7 % of the participants perceived strong necessity beliefs and strong concerns towards use of their ADHD medication. A higher score on the IPQ item ‘emotions’ was associated with higher rates of self-reported adherence and stronger concerns towards ADHD medication use were associated with lower adherence rates.
Non-adherence rates (60%) among adolescents in this study were relatively high, which is in line with previous studies reporting non-adherence rates between 13% to 64%.(24) High non-adherence rates among adolescents are seen in other chronic conditions such as asthma and type 1 diabetes as well.(42, 56) The lowest score was achieved on the item of the MARS about forgetting to take medication. Regarding the additional question to further explore reasons for non-adherence, forgetting to take medication was also the most commonly mentioned reason for not using medication as prescribed, just as found in other studies.(32, 33) This is understandable, considering that forgetfulness is one of the symptoms of ADHD.(7) This forgetfulness might also be caused by the adolescent’s busy social life and school work, which may occupy their mind significantly. Other frequently mentioned reasons for being non-adherent were taking medication only when it is needed and experiencing adverse effects. These reasons may be translated into drug holidays on weekends and school holidays when there is less need to control their symptoms.(14,
57)
Forgetting to take
medication also occurs more frequently on weekends and school holidays, because of the disruption of their daily routine.
Necessity beliefs and concerns towards use of ADHD medication were relatively low. Only 13% of the participants believed that medication was necessary to control their ADHD symptoms and only 7% had strong concerns towards their medication. These findings deviate from what has been seen among adolescents with asthma in a similar study, where 42% of the participants perceived strong necessity beliefs. The percentage of participants that had strong concerns towards medication use was similar (10%).(42) Adolescents with 20
ADHD often report that they do not feel any different while on medication (although people around them frequently notice the difference)(11), while adolescents with asthma immediately feel the difference after using their inhalator due to bronchodilatation. This might be an explanation for the higher necessity beliefs among adolescents with asthma. Despite the poor necessity beliefs and concerns, among the majority of the adolescents the necessity–concerns differential was positive (62%). This means that the necessity beliefs of the majority of the participants were still higher than their concerns towards their ADHD medication. Low necessity beliefs and concerns were reflected in the four attitude groups as well, the majority of the adolescents were classified as indifferent (81%). Accepting users were associated with higher adherence rates compared to indifferent users (p=0.03).
Regarding the illness perceptions among adolescents with ADHD, high median scores were found on the items about timeline, treatment control and illness comprehensibility. So participants reported to think that ADHD lasts their whole life, they believe that their treatment helps to control their symptoms and they indicated that they understand their disorder. Low median scores were achieved on the items about identity and concern, which means that they do not experience much ADHD symptoms and that they are not concerned about their ADHD. Average median scores were found on the items about consequences, personal control and emotions.
A higher score on IPQ item ‘emotions’ was associated with higher rates of self-reported adherence (p<0.01). Thus adolescents who are more emotionally affected by their ADHD were found to have higher adherence rates. Higher concerns towards medication were associated with lower adherence rates (p=0.03). Concerns about medication may be a target for educational and behavioural interventions to improve adherence to ADHD medication. However, the low number of adolescents with strong concerns can cause this to be a rather ineffective strategy.
No significant associations were found between self-reported adherence, gender, age and adverse effects. This finding contradicts previous studies that have reported male gender(31), older age(31-36) and adverse effects(38) to be associated with poor adherence. A possible
21
explanation for not finding an association between age and adherence contrary to previous studies may be that all the previous studies are conducted among children and adolescents and there may be more differences in ADHD medication adherence among children and adolescents than among adolescents alone. Only one study has found an association between gender and adherence to ADHD medication(31), but other studies(36, 51) found no association as in our study.
5.1.
STRENGTHS AND LIMITATIONS
One of the strengths of this study is that contrary to most studies that are performed to determine beliefs towards medicines and illness perceptions in adolescents with ADHD, our study is quantitative in nature. Because of this reason, we were able to study the association between those beliefs and illness perceptions and self-reported adherence in a larger sample of patients. Another strength is that a broad range of patients within primary care settings were included in the study and that we targeted not only patients of specific care groups.
An important limitation of our study is the relatively small sample size. We used an online survey, which is efficient and seems suitable for adolescent populations, but the overall response rate was relatively low. E-mail addresses of patients were rarely available in the participating pharmacies, thus almost all the invitations were sent by letter. Contrary to an e-mail invitation, adolescents had to go to their computer and fill in the link before they could start the survey. This may have had a negative influence on the overall response rate (11.9%) which was relatively low, but in line with the response rate seen in a similar study. (42) Another possible factor that may have influenced the overall response rate was the information brochure. Our information brochure was simple and black-and-white, although a coloured, more designed information brochure may have been more inviting.
Another limitation is that there was no data collected from patients who did not participate (only from 12 adolescents who actively declined participation), therefore we do not know whether our study population is representative in terms of gender, age, education level and ethnicity. Responders’ bias may be present as well. Participants might have a more 22
positive attitude towards medicines and be more aware of their health in general. The low number of adolescents in our study population that reported to smoke (11%) or use alcohol (23%) sometimes (compared to the general adolescent population), might be an indication for the latter.(58, 59) Thus our study might underestimate the real situation. The low number of adolescents of another origin (3 subjects) may also suggest that responders’ bias was presented.
Regarding the ages of the participants, it is noticeable that there are more younger adolescents than older adolescents. This might be caused by the pattern of drug discontinuation between ages 15 and 21, which is seen in a variety of studies in different countries and which was discussed in the introduction.(11, 19-21) Another possible explanation is poor randomization in the pharmacies when more than 25 patients were presented.
There is no golden standard for measuring adherence, every method has his own benefits and disadvantages. Self-report was in this case the most practical method, because of the low cost, flexibility and not being time-consuming. We were also more interested in the view of the adolescents towards their adherence, rather than objective data about their medication taking behaviour. Although self-report measures tend to overestimate medication adherence due to two biases: social desirability bias and memory bias. Social desirability bias occurs as patients feel pressured to provide a desirable response rather than an accurate assessment of their medication taking behaviour. To reduce this pressure the items were phrased in a non-threatening manner and patients were assured that their responses were anonymous.(60)
The decision to use a cut-off value of 23 for the MARS-5 scores to dichotomize the data, may have influenced the results, which was confirmed by our sensitivity analysis. If a cut-off value of 21 was used, no statistical significant associations were found. A cut-off value of 22 gave the same associations as our cut-off value of 23. An association between self-reported adherence and IPQ item ‘treatment control’ was found, if a cut-off value of 24 was used. A cut-off value of 25 gave associations between IPQ item ‘treatment control’ and ‘concern’
23
and adherence. We still preferred a cut-off of 23 because of the high power and because a cut-off value of 23 has already been used in other studies as well.(42, 49, 50)
5.2.
FUTURE RESEARCH
In line with previous research, this study made clear that adherence rates in the adolescent population are low. Only a few studies have been conducted to assess the influence of non-adherence on treatment outcomes. Further research is necessary to examine whether these findings can be replicated in other clinical and cultural settings.
Seeing that forgetting to take medication is the most mentioned reason to be nonadherent, attention should be given on strategies to reduce this forgetfulness. A possible strategy may be the development of a mobile application specific for adolescents with ADHD, which suits in the social environment of those adolescents. This app should include a reminder for taking their medication, a reminder to go to the doctor when their medication is almost empty, short and clear guidelines with what they should do if they forget to take their medication and information about their medication such as information about sideeffects and interactions with other drugs in a clear and succinct manner. In literature, positive results have already been seen among adolescents with Type 1 Diabetes, where using an app for self-management resulted in an improvement in the frequency of blood glucose monitoring.(61) Another study has suggested that the use of a medication reminder app was beneficial for adherence to antidepressant medication regimens.(62)
24
6. CONCLUSION This study showed that self-reported adherence is relatively low among adolescents with ADHD, just as necessity beliefs and concerns towards use of ADHD medication that were both found to be low as well. Adolescents who are more emotionally affected by their ADHD were found to have higher adherence rates and higher concerns towards use of ADHD medication were associated with lower adherence rates. Forgetting to take medication was the most commonly mentioned reason for not using medication as prescribed, this forgetfulness may be a target for strategies such as a mobile application to improve adherence to ADHD medications.
25
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42. Koster ES, Philbert D, Winters NA, Bouvy ML. Adolescents' inhaled corticosteroid adherence: the importance of treatment perceptions and medication knowledge. J Asthma. 2014:1-6. 43. Koster ES, Blom L, Philbert D, Rump W, Bouvy ML. The Utrecht Pharmacy Practice network for Education and Research: a network of community and hospital pharmacies in the Netherlands. International journal of clinical pharmacy. 2014;36(4):669-74. 44. WHO. ATC: structure and principles. 45. Butler JA, Peveler RC, Roderick P, Horne R, Mason JC. Measuring compliance with drug regimens after renal transplantation: comparison of self-report and clinician rating with electronic monitoring. Transplantation. 2004;77(5):786-9. 46. Cohen JL, Mann DM, Wisnivesky JP, Home R, Leventhal H, Musumeci-Szabo TJ, et al. Assessing the validity of self-reported medication adherence among inner-city asthmatic adults: the Medication Adherence Report Scale for Asthma. Annals of allergy, asthma & immunology : official publication of the American College of Allergy, Asthma, & Immunology. 2009;103(4):325-31. 47. Krauskopf K, Federman AD, Kale MS, Sigel KM, Martynenko M, O'Conor R, et al. Chronic Obstructive Pulmonary Disease Illness and Medication Beliefs are Associated with Medication Adherence. Copd. 2014. 48. Huther J, von Wolff A, Stange D, Harter M, Baehr M, Dartsch DC, et al. Incomplete medication adherence of chronically ill patients in German primary care. Patient preference and adherence. 2013;7:237-44. 49. Sjolander M, Eriksson M, Glader EL. The association between patients' beliefs about medicines and adherence to drug treatment after stroke: a cross-sectional questionnaire survey. BMJ Open. 2013;3(9):e003551. 50. Percival M, Cottrell WN, Jayasinghe R. Exploring the beliefs of heart failure patients towards their heart failure medicines and self care activities. International journal of clinical pharmacy. 2012;34(4):618-25. 51. Wehmeier PM, Dittmann RW, Banaschewski T. Treatment compliance or medication adherence in children and adolescents on ADHD medication in clinical practice: results from the COMPLY observational study. Atten Defic Hyperact Disord. 2014. 52. Horne R, Weinman J, Hankins M. The beliefs about medicines questionnaire: The development and evaluation of a new method for assessing the cognitive representation of medication. Psychology & Health. 1999;14(1):1-24. 53. Vytrisalova M, Touskova T, Ladova K, Fuksa L, Palicka V, Matoulkova P, et al. Adherence to oral bisphosphonates: 30 more minutes in dosing instructions matter. Climacteric. 2015:1-9. 54. Wileman V, Farrington K, Wellsted D, Almond M, Davenport A, Chilcot J. Medication beliefs are associated with phosphate binder non-adherence in hyperphosphatemic haemodialysis patients. Br J Health Psychol. 2014. 55. Broadbent E, Petrie KJ, Main J, Weinman J. The brief illness perception questionnaire. J Psychosom Res. 2006;60(6):631-7. 56. Amed S, Nuernberger K, McCrea P, Reimer K, Krueger H, Aydede SK, et al. Adherence to clinical practice guidelines in the management of children, youth, and young adults with type 1 diabetes--a prospective population cohort study. The Journal of pediatrics. 2013;163(2):543-8. 57. Pestello JLD-BFG. Medicating for ADD/ADHD: Personal and Social Issues. Int J Ment Health Addiction. 2010;8:482-92. 58. Rijksinstituut voor Volksgezondheid en Milieu. Hoeveel mensen roken? 2014. 59. Rijksinstituut voor Volksgezondheid en Milieu. Hoeveel mensen gebruiken alcohol? 2014. 60. Lehmann A, Aslani P, Ahmed R, Celio J, Gauchet A, Bedouch P, et al. Assessing medication adherence: options to consider. International journal of clinical pharmacy. 2014;36(1):55-69. 61. Cafazzo JA, Casselman M, Hamming N, Katzman DK, Palmert MR. Design of an mHealth app for the self-management of adolescent type 1 diabetes: a pilot study. Journal of medical Internet research. 2012;14(3):e70.
28
62. Hammonds T, Rickert K, Goldstein C, Gathright E, Gilmore S, Derflinger B, et al. Adherence to antidepressant medications: a randomized controlled trial of medication reminding in college students. Journal of American college health : J of ACH. 2015;63(3):204-8.
29
APPENDIX 1. DSM-V DIAGNOSTIC CRITERIA ADHD
1.1.
A persistent pattern of inattention and/or hyperactivity-impulsivity that interferes
with functioning or development, as characterized by (1) and/or (2):
1.1.1. Inattention: Six (or more) of the following symptoms have persisted for at least 6 months to a degree that is inconsistent with developmental level and that negatively impacts directly on social and academic/occupational activities: Note: The symptoms are not solely a manifestation of oppositional behavior, defiance, hostility, or failure to understand tasks or instructions. For older adolescents and adults (age 17 and older), at least five symptoms are required. a. Often fails to give close attention to details or makes careless mistakes in schoolwork, at work, or during other activities (e.g., overlooks or misses details, work is inaccurate). b. Often has difficulty sustaining attention in tasks or play activities (e.g., has difficulty remaining focused during lectures, conversations, or lengthy reading). c. Often does not seem to listen when spoken to directly (e.g., mind seems elsewhere, even in the absence of any obvious distraction). d. Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace (e.g., starts tasks but quickly loses focus and is easily sidetracked). e. Often has difficulty organizing tasks and activities (e.g., difficulty managing sequential tasks; difficulty keeping materials and belongings in order; messy, disorganized work; has poor time management; fails to meet deadlines). f. Often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort (e.g., schoolwork or homework; for older adolescents and adults, preparing reports, completing forms, reviewing lengthy papers).
g. Often loses things necessary for tasks or activities (e.g., school materials, pencils, books, tools, wallets, keys, paperwork, eyeglasses, mobile telephones). h. Is often easily distracted by extraneous stimuli (for older adolescents and adults, may include unrelated thoughts). i.
Is often forgetful in daily activities (e.g., doing chores, running errands; for older adolescents and adults, returning calls, paying bills, keeping appointments).
1.1.2. Hyperactivity and impulsivity: Six (or more) of the following symptoms have persisted for at least 6 months to a degree that is inconsistent with developmental level and that negatively impacts directly on social and academic/occupational activities: Note: The symptoms are not solely a manifestation of oppositional behavior, defiance, hostility, or a failure to understand tasks or instructions. For older adolescents and adults (age 17 and older), at least five symptoms are required. a. Often fidgets with or taps hands or feet or squirms in seat. b. Often leaves seat in situations when remaining seated is expected (e.g., leaves his or her place in the classroom, in the office or other workplace, or in other situations that require remaining in place). c. Often runs about or climbs in situations where it is inappropriate. (Note: In adolescents or adults, may be limited to feeling restless.) d. Often unable to play or engage in leisure activities quietly. e. Is often “on the go,” acting as if “driven by a motor” (e.g., is unable to be or uncomfortable being still for extended time, as in restaurants, meetings; may be experienced by others as being restless or difficult to keep up with). f. Often talks excessively. g. Often blurts out an answer before a question has been completed (e.g., completes people’s sentences; cannot wait for turn in conversation). h. Often has difficulty waiting his or her turn (e.g., while waiting in line). i.
Often interrupts or intrudes on others (e.g., butts into conversations, games, or activities; may start using other people’s things without asking or
receiving permission; for adolescents and adults, may intrude into or take over what others are doing).
1.2.
Several inattentive or hyperactive-impulsive symptoms were present prior to age 12
years. 1.3.
Several inattentive or hyperactive-impulsive symptoms are present in two or more
settings (e.g., at home, school, or work; with friends or relatives; in other activities). 1.4.
There is clear evidence that the symptoms interfere with, or reduce the quality of,
social, academic, or occupational functioning. 1.5.
The symptoms do not occur exclusively during the course of schizophrenia or another
psychotic disorder and are not better explained by another mental disorder (e.g., mood disorder, anxiety disorder, dissociative disorder, personality disorder, substance intoxication or withdrawal).
2. INVITATION LETTER Hallo [Naam], Ik nodig je graag uit om mee te doen aan een onderzoek naar het omgaan met medicijnen die gebruikt kunnen worden tegen ADHD of concentratieproblemen. Dit onderzoek wordt uitgevoerd door onderzoekers van de Universiteit Utrecht, onze apotheek werkt hier aan mee. Meedoen houdt in: het invullen van een korte online vragenlijst (ongeveer 15 minuten). Overleg met je ouders voor je besluit mee te doen. In de bijgevoegde folder kun je meer informatie vinden over het onderzoek. Hier staat ook de link naar de online vragenlijst. Mocht je na het lezen van de informatie nog vragen hebben dan kun je deze stellen aan mij of aan één van de onderzoekers (de gegevens staan onderaan de brief en in de folder). Waarom jij? De onderzoekers zoeken jongeren in de leeftijdscategorie van 12 tot 18 jaar die het afgelopen jaar tenminste tweemaal een recept voor een medicijn voor ADHD of concentratieproblemen hebben opgehaald in onze apotheek. Uit onze gegevens blijkt dat jij één van deze jongeren bent, vandaar dat wij jou uitnodigen om de vragenlijst in te vullen.
Vertrouwelijkheid gegevens Alle gegevens van de vragenlijst worden vertrouwelijk verwerkt. De onderzoekers hebben geen toegang tot jouw persoonlijke gegevens zoals je naam of adres. De verwerking van de gegevens wordt gedaan met behulp van een onderzoeksnummer. De antwoorden die je geeft worden alleen gebruikt voor dit onderzoek. De apotheek krijgt de antwoorden die je hebt ingevuld niet te zien. Als je mee wilt doen, vraag ik je vriendelijk om binnen de 2 weken deze vragenlijst in te vullen. Ook als je niet aan het onderzoek mee wilt doen, vraag ik je om toch even naar de link in de folder te surfen. De onderzoekers zouden dan graag willen weten wat de reden is dat jij niet mee wilt doen; je hoeft alleen de eerste paar vragen in te vullen. Indien je dit graag wilt, kun je na afloop van het onderzoek via onze apotheek of via de onderzoekers een samenvatting ontvangen van de resultaten. Ik bedank je alvast voor je medewerking. Met vriendelijke groet, [Naam Apotheker en naam apotheek] Gegevens onderzoekers: Dr. Ellen Koster en drs. Daphne Philbert UPPER Universiteit Utrecht
[email protected]
3. INFORMATION BROCHURE UITNODIGING voor deelname aan: Onderzoek naar omgaan met medicijnen voor ADHD of concentratieproblemen bij jongeren Informatie voor jongeren van 12 tot 18 jaar Wij willen je namens jouw apotheek uitnodigen om deel te nemen aan een onderzoek ‐ het invullen van een korte online vragenlijst ‐ naar het omgaan met medicijnen voor ADHD, of klachten zoals concentratieproblemen. Dit onderzoek wordt uitgevoerd door onderzoekers van de Universiteit Utrecht. In deze folder vertellen we je meer over dit onderzoek en wat het betekent als je hieraan meedoet. Ben je jonger dan 16 jaar, laat dan ook je ouders deze informatiefolder lezen, zodat je samen kan beslissen of je de vragenlijst in gaat vullen Waarom dit onderzoek? Er is nog niet veel bekend over hoe jongeren die medicatie gebruiken voor ADHD, of klachten zoals concentratieproblemen, met hun medicijnen omgaan. Met dit onderzoek willen we te weten komen wat jongeren tussen de 12 en 18 van hun medicijnen vinden en hoe zij deze gebruiken. Waarom ben jij uitgenodigd? Voor dit onderzoek zoeken wij jongeren van 12 tot 18 jaar die in het afgelopen jaar minstens tweemaal een recept voor een medicijn dat gebruikt kan worden bij ADHD of concentratieproblemen hebben opgehaald in de apotheek. Volgens de gegevens van jouw apotheek ben jij één van deze jongeren. Wat betekent deelname aan dit onderzoek voor jou? Deelname aan dit onderzoek is vrijwillig. Je kan meedoen door het invullen van een online vragenlijst. Dit duurt ongeveer 15 minuten. De vragenlijst bestaat uit algemene vragen en vragen over hoe jij je medicijnen gebruikt en wat jouw mening is over je medicijnen. Onder de deelnemers verloten we een aantal Bol.com waardebonnen, om hier kans op te maken kun je aan het einde van de vragenlijst je e‐mailadres achterlaten Hoe gaan we met jouw gegevens om? Al jouw gegevens worden vertrouwelijk behandeld. Alleen de onderzoekers krijgen jouw gegevens te zien en zij verwerken deze informatie met een onderzoekscode. Jouw apotheek krijgt geen toegang tot de antwoorden die je hebt ingevuld en jouw naam zal nooit ergens worden vermeld. Ja, ik wil deelnemen aan dit onderzoek.* Hoe nu verder? Als je besluit om mee te doen, dan vragen we je om de online vragenlijst binnen 2 weken in te vullen. Ga naar de vragenlijst met de volgende link: http://tinyurl.com/jongeren‐ADHD Je start de vragenlijst met het aangeven dat je mee wilt doen aan het onderzoek. Nee, ik wil niet deelnemen. Hoe nu verder?
Als je besluit om niet mee te doen aan dit onderzoek, zouden we graag willen weten waarom je niet meedoet en daarnaast een paar algemene informatievragen willen stellen. Je kunt hiervoor ook naar de vragenlijst gaan (zie link hierboven) en na het aangeven dat je niet mee wilt doen volgen dan nog een paar korte vragen. *Ben je jonger dan 16 jaar, overleg deelname met je ouders. Krijg je bericht over de uitslag? Het is niet mogelijk om jouw persoonlijke resultaten van de vragenlijst te ontvangen. Als het onderzoek is afgerond kan je via jouw apotheek een samenvatting van de uitkomsten ontvangen. Je kunt ook een email sturen naar de onderzoekers. Vragen Voor vragen en problemen bij het invullen van de vragenlijst, of als je vragen hebt over de inhoud van het onderzoek, kun je terecht bij dr. Ellen Koster of drs. Daphne Philbert (onderzoekers bij de Universiteit Utrecht) via
[email protected].
4. ONLINE SURVEY Voordat je besluit of je wel of niet mee wilt doen, willen we je vragen om onderstaande informatie door te lezen. Wat willen de onderzoekers te weten komen? We willen graag te weten komen hoe jongeren die medicijnen gebruiken voor ADHD (of concentratieproblemen) hiermee omgaan. Het invullen van de vragenlijst duurt ongeveer 15 minuten. Je mag zelf bepalen of je mee wilt doen of niet. Vertrouwelijkheid gegevens De antwoorden die jij geeft op de vragen zullen vertrouwelijk en anoniem behandeld worden. Dit betekent dat we niet naar je naam zullen vragen en dat jouw apotheker de gegevens ook niet te zien krijgt. Wat krijg je als je meedoet? Onder de personen die de hele vragenlijst hebben ingevuld verloten we aan het einde van het onderzoek (zomer 2015) een aantal bol.com waardebonnen ter waarde van 15 euro. Om iemand deze prijs te kunnen geven vragen we aan het einde van de vragenlijst of je je emailadres in wilt vullen. Dit emailadres zullen we alleen gebruiken om contact met je op te nemen als je de prijs hebt gewonnen Je hoeft je e-mailadres dus niet in te vullen, maar dan kun je de prijs ook niet winnen. Contact Als je nog vragen hebt over dit onderzoek dan kun je contact opnemen met Ellen Koster of Daphne Philbert via
[email protected]. 4.1.
DEELNAME
4.1.1. Heb je de ontvangen informatie gelezen en wil je meedoen aan dit onderzoek?
Ja
Nee
4.1.2. Wat is de reden waarom je niet mee wilt doen? (Indien antwoord op vraag 2.1.1. 'nee' is)
Ik heb geen tijd
Ik heb er geen zin in
Het onderwerp interesseert me niet
Ik gebruik geen medicijnen voor ADHD (of voor concentratieproblemen)
Privacy
Andere
4.1.3. Hoe oud ben je?
11 jaar
12 jaar
13 jaar
14 jaar
15 jaar
16 jaar
17 jaar
18 jaar
19 jaar
4.1.4. Ben je een jongen of meisje?
Jongen
Meisje
4.1.5. Welke opleiding volg je?
Basisschool
Praktijkonderwijs
Vmbo
Havo
Vwo (atheneum, gymnasium)
Middelbaar beroepsonderwijs (mbo)
Hoger beroepsonderwijs (hbo)
Universiteit
Anders, namelijk:
4.1.6. In welk land ben je geboren?
4.2.
Nederland
Turkije
Marokko
Suriname
Antillen
Anders, namelijk:
ALGEMENE VRAGEN GEZONDHEID
4.2.1. Wat vindt je, over het algemeen genomen, van jouw gezondheid ?
Uitstekend
Zeer goed
Goed
Matig
Slecht
4.2.2. Je bent uitgenodigd voor het onderzoek omdat je volgens de gegevens van jouw apotheek een van de volgende geneesmiddelen gebruikt: Ritalin, Concerta, Equasym
XL,
Medikinet,
Medikinet
CR,
Methylfenidaat, Strattera of
Dexamfetamine. Deze geneesmiddelen worden vaak gebruikt bij ADHD, concentratieproblemen en/of hyperreactiviteit (druk zijn). Waarom gebruik je een van de bovenstaande geneesmiddelen? Er zijn meerdere antwoorden mogelijk.
Omdat ik ADHD heb
Omdat ik anders hyperactief/te druk ben
Om me beter te kunnen concentreren
Om beter contacten te leggen
Om beter te kunnen presteren (studie)
Om beter te kunnen presteren (sport)
Ik gebruik deze geneesmiddelen niet
Een andere reden, namelijk:
4.2.3. Hoe denk je over jouw aandoening? De volgende vragen gaan over jouw eigen ideeën en opvattingen over de aandoening waar je de eerder genoemde geneesmiddelen voor gebruikt. Het gaat bij deze vragen niet om een goed of fout antwoord. Klik bij elke vraag op het cijfer dat het beste jouw mening weergeeft.
Hoeveel invloed hebben je klachten op je leven?
Helemaal geen invloed 0 1 2 3 4
Hoe lang denk je dat je klachten Heel erg kort 0 1 2 zullen aanhouden?
3
4
5
6
7
Zeer veel invloed 8 9 10
5
6
7
Mijn hele leven 8 9 10
In hoeverre denk je jouw klachten zelf te kunnen beheersen?
Helemaal geen beheersing 0 1 2 3 4
5
6
Zeer veel beheersing 7 8 9 10
In hoeverre denk je dat jouw medicatie helpt bij je klachten?
Helemaal niet 0 1 2
4
5
6
7
In hoeverre ervaar je lichamelijke klachten van je aandoening?
Helemaal geen klachten 0 1 2 3 4
5
6
7
In hoeverre ben je bezorgd over Helemaal niet bezorgd 0 1 2 3 4 je klachten?
5
6
7
3
In hoeverre heb je het gevoel dat je jouw klachten begrijpt?
Ik begrijp mijn klachten helemaal niet 0 1 2 3 4
In hoeverre hebben jouw klachten invloed op je gemoedstoestand? (bijv. het maakt je boos, angstig of van streek)
Helemaal geen invloed 0 1 2 3 4
8
Heel veel 9 10
Zeer veel klachten 8 9 10
8
Heel bezorgd 9 10
Ik begrijp mijn klachten 5
5
6
6
7
8
9
10
Uitermate veel invloed 7 8 9 10
4.3.
MEDICATIE
4.3.1. Welke medicijnen gebruik je op dit moment?
Concerta
Equasym XL
Medikinet
Medikinet CR
Methylfenidaat
Ritalin
Dexamfetamine
Strattera
Anders, namelijk:
4.3.2. Hoe lang gebruik je deze medicijnen al? Als je niet precies meer weet hoeveel maanden je het geneesmiddel gebruikt, vul je het aantal jaar in en 0 in het tweede vakje.
Aantal jaar:
Aantal maanden:
4.3.3. Gebruik je nog medicijnen voor andere chronische aandoeningen? Met chronische aandoeningen bedoelen we aandoeningen die je hebt voor een langere periode. Dus geen ziekte zoals verkoudheid, griep, keelontsteking en voedselvergiftiging die na een paar weken genezen zijn. Voorbeelden van chronische ziekten zijn astma en diabetes (suikerziekte).
Ja
Nee
4.3.4. Voor welke andere aandoeningen gebruik je nog medicatie? (Indien antwoord vraag 3.3.3. ‘ja’ is) Er zijn meerdere antwoorden mogelijk.
Diabetes mellitus (suikerziekte)
Astma
Allergie
Eczeem
Reuma
paniekaanvallen/paniekstoornis/angststoornis/depressie
Epilepsie
Anders, namelijk:
4.3.5. Hoe gebruik je jouw medicijnen? Veel mensen hebben een eigen manier om hun geneesmiddelen te gebruiken. Deze manier kan afwijken van de instructies op het etiket of van wat de dokter heeft voorgeschreven. Hieronder volgen een aantal manieren waarop mensen hun geneesmiddelen gebruiken. Klik bij elke bewering op het vakje dat het beste bij jou past. Het gaat hierbij om de medicijnen die je gebruikt voor je ADHD, concentratieproblemen of hyperactiviteit (druk zijn). Voorbeelden zijn Concerta, Medikinet CR, Methylfenidaat en Ritalin.
Nooit Ik vergeet mijn medicijnen te gebruiken Ik verander de dosis van mijn medicijnen Ik stop een tijdje met het gebruik van mijn medicijnen Ik besluit een dosis over te slaan Ik gebruik minder van mijn medicijnen dan is voorgeschreven
Zelden
Soms
Vaak
Altijd
4.3.6. Komt het weleens voor dat je je medicatie niet inneemt of in een kleinere hoeveelheid dan de arts jou voorgeschreven heeft?
Ja
Nee, ik neem mijn medicatie altijd in zoals mijn arts me heeft voorgeschreven
4.3.7. Wat zijn voor jou redenen om je medicatie niet in te nemen of anders dan dat voorgeschreven is? (Indien antwoord vraag 3.3.6. ‘ja’ is) Er zijn meerdere antwoorden mogelijk.
Ik ervaar bijwerkingen (zoals problemen bij het slapen, verminderde eetlust, misselijkheid of hoofdpijn)
Ik voel me niet mezelf als ik mijn medicatie gebruik
Ik vergeet mijn medicatie soms te gebruiken
Ik vind dat mijn medicatie niet (goed) werkt
Ik vind het lastig om mijn medicatie (meerdere keren) per dag in te nemen
Ik gebruik mijn medicatie alleen als het echt nodig is
Ik gebruik (in het algemeen) niet graag medicatie
Anders, namelijk:
4.3.8. Stop je in het weekend of tijdens schoolvakanties weleens bewust met je medicatie?
Ja
Nee
4.3.9. Heb je weleens last van bijwerkingen?
Ja
Nee
4.3.10. Van welke bijwerkingen heb je dan last? (Indien antwoord vraag 3.3.9. ‘ja’ is) Er zijn meerdere antwoorden mogelijk.
Verminderde eetlust
Me niet mezelf voelen
Slaapproblemen
Hoofdpijn
Misselijkheid
Prikkelbaarheid (sneller van slag, kwaad of geïrriteerd dan normaal)
Buikpijn
Rusteloos zijn (voortdurend bewegen, moeite om stil te zitten)
Gewichtsverlies
Anders, namelijk:
4.3.11. Mijn medicijnen helpen me om: Er zijn meerdere antwoorden mogelijk.
Me beter te kunnen concentreren
Minder hyperactief/druk te zijn
Mijn prestaties op school te verbeteren
De relatie met anderen (zoals mijn ouders, vrienden, en familie) te verbeteren
Anders, namelijk:
4.3.12. Hoe denk je over je medicijnen? De volgende vragen gaan over hoe jij denkt de medicijnen die aan jou voorgeschreven zijn. Hieronder staan een aantal uitspraken die andere mensen gedaan hebben over hun medicijnen. Wil je aangeven in hoeverre je het eens of oneens bent met deze uitspraken door het vakje aan te klikken dat het beste jouw mening weergeeft. Er zijn geen goede of foute antwoorden. Het gaat hierbij om de medicijnen die je gebruikt voor de behandeling van je ADHD, concentratieproblemen of hyperactiviteit (druk zijn). Voorbeelden zijn Concerta, Medikinet CR, Methylfenidaat en Ritalin.
Op dit moment hangt mijn gezondheid afvan mijn medicijnen
Ik maak me zorgen over het feit dat ik medicijnen moet nemen
Mijn leven zou erg moeilijk zijn zonder medicijnen
Soms maak ik me zorgen over de effecten die mijn medicijnen op de lange termijn kunnen hebben
Zonder mijn medicijnen zou ik heel ziek zijn Ik ben onvoldoende op de hoogte van wat mijn medicijnen doen
Mijn toekomstige gezondheid hangt afvan mijn medicijnen
Helemaal
Niet
Geen
niet mee
mee
duidelijke
Mee
Helemaal
eens
eens
mening
eens
mee eens
Helemaal
Niet
Geen
niet mee
mee
duidelijke
Mee
Helemaal
eens
eens
mening
eens
mee eens
Mijn medicijnen ontwrichten mijn leven
Soms ben ik bang dat ik té afhankelijkzal worden van mijn medicijnen
Mijn medicijnen voorkomen dat ik verder achteruit ga
4.4.
INVLOED OUDERS EN VRIENDEN
4.4.1. Spelen je ouders een rol bij het gebruik van je medicijnen of het omgaan met je klachten? Met gebruiken van je medicatie bedoelen we bijvoorbeeld het ophalen van je medicijnen in de apotheek en hulp bij het herinneren om je medicijnen in te nemen.
Ja
Nee, ze spelen geen belangrijke rol bij het gebruiken van mijn medicijnen.
4.4.2. Welke rol spelen je ouders bij het gebruik van je medicijnen of het omgaan met je klachten? (Indien antwoord vraag 3.4.1. ‘ja’ is) Er zijn meerdere antwoorden mogelijk.
Ze halen mijn medicijnen op bij de apotheek
Ze helpen mij herinneren mijn medicijnen in te nemen
Ze moedigen me aan mijn medicijnen in te nemen
Ik kan goed met ze praten over mijn klachten of medicijnen
Ze gaan mee naar de dokter
Anders, namelijk:
4.4.3. Vind je de hulp van je ouders bij het gebruiken van je medicatie belangrijk?
Ja, ik heb graag dat ze me zo veel mogelijk helpen
Ja, maar ze hoeven me niet constant te controleren
Ja, ik vind het fijn als ze mijn medicijnen ophalen, maar ik heb geen hulp nodig bij het innemen
Ja, ik vind het fijn dat ze mij helpen herinneren om mijn medicijnen in te nemen, maar ophalen bij de apotheek doe ik liever zelf
Nee, ik wil niet dat ze me helpen, ik kan best zelfstandig zijn
Anders, namelijk:
4.4.4. Gebruik je je medicijnen in de aanwezigheid van vrienden of klasgenoten?
Ja
Nee
4.4.5. Waarom niet? (Indien antwoord vraag 3.4.4. ‘nee’ is) Meerdere antwoorden mogelijk.
Ik schaam me
Ze weten niet dat ik ADHD of concentratieproblemen heb, of hyperactivief (druk) kan zijn
Ze stellen er vervelende vragen over
Anders, namelijk:
4.4.6. Spelen je vrienden (of andere mensen in je direct omgeving) een rol bij het gebruiken van je medicatie of het omgaan met je klachten?
Ja
Nee, ze spelen geen belangrijke rol bij het gebruiken van mijn medicijnen.
4.4.7. Welke rol spelen je vrienden (of andere mensen in je direct omgeving) bij het gebruiken van je medicatie of omgaan met je klachten? (Indien antwoord vraag 3.4.6. ‘ja’ is) Er zijn meerdere antwoorden mogelijk.
Ze helpen mij herinneren mijn medicijnen in te nemen
Ze moedigen me aan om mijn medicijnen in te nemen
Ik kan goed met ze praten over mijn klachten en medicijnen
Anders, namelijk:
4.4.8. Heb jij wel eens een pilletje (Ritalin, Concerta, Equasym XL, Medikinet, Medikinet CR, Methylfenidaat of Dexamfetamine) aan iemand anders gegeven of verkocht?
Ja
Nee
4.4.9. Aan wie heb je wel eens een pilletje gegeven of verkocht? (Indien antwoord vraag 3.4.8. ‘ja’ is)
Vrienden
Collega
Familie
Klasgenoot
Anders, namelijk:
4.5.
LEVENSTIJL
4.5.1. Heb je in de afgelopen 6 maanden gerookt?
Ja
Nee
4.5.2. Hoe vaak heb je in de afgelopen maand gerookt? (Indien antwoord vraag 3.5.1. ‘ja’ is)
Eén keer
Iedere week
Elke dag
4.5.3. Wat heb je gerookt? (Indien antwoord vraag 3.5.1. ‘ja’ is) Meerdere antwoorden mogelijk.
Sigaretten
E-sigaret
Anders, namelijk:
4.5.4. Heb je in de afgelopen 6 maanden alcohol gedronken?
Ja
Nee
4.5.5. Hoe vaak heb je in de afgelopen maand alcohol gedronken? (Indien antwoord vraag 3.5.4. ‘ja’ is)
Eén keer
Iedere week
Elke dag
4.5.6. Wat heb je gedronken? (Indien antwoord vraag 3.5.4. ‘ja’ is) Meerdere antwoorden mogelijk.
Bier
Wijn
Sterke drank
Mixdrankjes
Anders, namelijk:
4.5.7. Sport je? Gymnastiek op school tellen we niet mee.
Ja
Nee
4.5.8. Welke sport doe je? (Indien antwoord vraag 3.5.7. ‘ja’ is) Meerdere antwoorden mogelijk.
aerobics/steps/spinning
atletiek
badminton
basketbal
duiksport
fitness
danssport
gymnastiek/turnen
handbal
hardlopen/joggen/trimmen
hockey
honkbal/softbal
judo
kano
(berg)klimsport
korfbal
motorsport
paardensport
roeien
schaatsen
skeeleren/skaten
skiën/langlaufen/snowboarden
squash
tafeltennis
tennis
vecht- en verdedigingssporten
voetbal
volleybal
waterpolo
wielrennen/toerfietsen
zeilen/surfen
zwemsport
Andere:
4.5.9. Hoeveel uur per week sport je gemiddeld? (Indien antwoord vraag 3.5.7. ‘ja’ is) … uur
