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Page 1: Attitudes Toward Attention-Deficit Hyperactivity Disorder (ADHD) Treatment: Parents' and Children's Perspectives

1036

and tend to be mild and short-lived,”3 these are not thecommon beliefs.5 Unlike other chronic therapies,methylphenidate treatment has always been consideredcontroversial and even dangerous in public opinion.6-7

As in other chronic conditions, the attitudes toward thesuggested treatment can affect compliance and be essentialfor the patient’s maximal benefit and outcome. In this era,pretreatment information from various nonmedical sourcesis easily accessible through nonmedical channels. The inter-actions between common knowledge and previous beliefs ofboth children and parents regarding methylphenidate andthe effect on their attitudes toward methylphenidate treat-ment have not been thoroughly investigated.

The aim of this study was to identify factors affectingattitudes toward methylphenidate treatment among chil-dren with ADHD and their parents. We have also exam-ined the role of a neurologist in this fragile balance.

Patients and Methods

The study was conducted in an outpatient clinic of a neu-ropediatric unit based in a tertiary care hospital during 12months.

Participants

The participants were 50 children (40 boys and 10 girls), withthe mean age 12 years and 6 months (standard deviation = 2

Attention-deficit hyperactivity disorder (ADHD) is achronic disorder, affecting 3% to 10% of the gen-eral pediatric population.1-2 The American Academy

of Pediatrics stated that “ . . . the clinician should recommendstimulant medication and/or behavior therapy, as appropriate,to improve target outcomes in children with attention-deficithyperactivity disorder.”3 Methylphenidate hydrochloride(Ritalin) is the most common prescribed medication forADHD.4 Although the American Academy of Pediatricsclinical guidelines stated that “ . . . stimulants are gener-ally considered safe medications, with a few contraindi-cations” and “ . . . side effects occur early in treatment

Original Article

Attitudes Toward Attention-Deficit Hyperactivity Disorder (ADHD) Treatment: Parents’ and Children’s PerspectivesItai Berger, MD, Talia Dor, MD, Yoram Nevo, MD, and Gil Goldzweig, PhD

Attitudes toward pharmacological treatment may be a majorfactor contributing to adherence to such treatment. In the cur-rent study, attitudes toward methylphenidate treatment among50 children diagnosed with attention-deficit hyperactivity disor-der (ADHD) and their parents were assessed. Authors of thisstudy have found that the study population is concerned andsuspicious toward methylphenidate treatment. Most partici-pants were exposed to negative information even before treat-ment initiation, which caused many participants to consultother sources and postpone the treatment initiation. Although

experiencing methylphenidate as safe and effective (after 23.5months of treatment), the leading cause of negative attitudes isthe concern regarding long-term effects. The single most effec-tive factor regarding the attitude toward methylphenidate treat-ment is the neurologist’s explanation. It is concluded that thepediatric neurologist has a crucial role in affecting attitudes ofchildren and parents toward methylphenidate treatment.

Keywords: attention-deficit hyperactivity disorder; methyl-phenidate; attitudes; neurologist

Journal of Child NeurologyVolume 23 Number 9

September 2008 1036-1042© 2008 Sage Publications

10.1177/0883073808317726http://jcn.sagepub.com

hosted athttp://online.sagepub.com

From the Neuro-Pediatric Unit, Hadassah-Hebrew University MedicalCenter (IB, TD, YN); and the Department of Psychology, HebrewUniversity (GG), Jerusalem, Israel.

Address correspondence to: Itai Berger, MD, The Neuro-Pediatric Unit,Hadassah-Hebrew University Medical Center, Mount Scopus, PO Box24035, Jerusalem 91240, Israel; e-mail: [email protected].

The study was done in the Neuro-Pediatric Unit at Shaare-ZedekMedical Center affiliated with the Hebrew University, Jerusalem, Israel.

This study was presented (as a poster presentation) in the 7th EuropeanPaediatric Neurology Society Congress (September 2007, Kusadasi, Turkey)and in the 48th annual meeting of the European Society for PaediatricResearch (October 2007, Prague, Czech Republic).

Berger I, Dor T, Nevo Y, Goldzweig G. Attitudes Toward Attention-DeficitHyperactivity Disorder (ADHD) Treatment: Parents’ and Children’sPerspectives. J Child Neurol. 2008;23:1036-1042.

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Attitudes Toward Attention-Deficit Hyperactivity Disorder Treatment / Berger et al 1037

years and 7 months). They were diagnosed with ADHD andwere treated with methylphenidate for at least 6 months (anaverage of 23.5 months). Fifty pair-matched parents also par-ticipated (ie, the parents of the above-mentioned children: 42 [84%] mothers and 8 [16%] fathers.)

Inclusion Criteria

The diagnosis of ADHD was made by a certified pediatricneurologist. The children were treated with methylphenidatefor at least 6 months and should have been otherwisehealthy.

Exclusion Criteria

The exclusion criteria included mental retardation, otherchronic conditions, chronic use of medications (other thanmethylphenidate), comorbidity with other psychiatric diag-nosis (depression, anxiety, and psychosis), and refusal to par-ticipate in the study.

Participants Selected in a 3-Stage Procedure

In stage 1, children were referred to the clinic by their pedia-trician, general practitioner, teacher, psychologist, or directlyby their parents due to ADHD symptoms and signs. In stage2, a certified pediatric neurologist made ADHD diagnosis,based on Diagnostic and Statistical Manual of Mental Disor-ders (Fourth Edition). The diagnostic procedure includedinterview with the children and parents, fulfillment ofDiagnostic and Statistical Manual of Mental Disorders (FourthEdition) based questionnaires by parents and teachers, andneurological examination. In all, 35 (70%) of 50 childrenwere examined 2 times, with and without methylphenidate,using a computerized continuous performance test. In stage3, 50 pairs of children and parents who were interested inparticipating and who fulfilled the above-mentioned criteriacompleted the study questionnaires, separately, on the sameoccasion. A trained research assistant who provided assis-tance when needed supervised the children.

Two questionnaires were prepared for this study by theinvestigators in accordance with the previous studies.8-10

Parents’ questionnaire included 30 questions (appendixA), and children’s questionnaire included 20 questions(appendix B).

Twenty children and their parents completed thequestionnaires initially as a pilot study. These results werenot included in this study. After necessary modifications,the final form of the questionnaires (appendixes A and B)was used in this study.

The questionnaires were divided into 4 sections: epi-demiology, source of information, common knowledge,and compliance.

Refusals

We have offered 74 families to participate in the study; 50(approximately 67.5%) agreed.

Ethical approval was obtained from the Internal ReviewBoard of Shaare-Zedek Medical Center, Jerusalem, Israel. Allchildren agreed to participate in the study, and all parentssigned an informed consent form.

Statistical Analysis

Descriptive statistical measures (frequencies and per-centages) were calculated for each item of the question-naire, separately for parents and children. Comparisonbetween the children and the parents was made by meansof chi-square test in case of unmatched comparisons andMcNemar test in case of matched comparisons.

Results

Parents

Fifty questionnaires were completed by the parentsregarding 40 boys and 10 girls.

Epidemiology. The questionnaires were completed by 42(84%) mothers and 8 (16%) fathers. Their children weretaking methylphenidate for an average of 23.5 months.Sixteen percent of the children were responsible for tak-ing methylphenidate alone, and in 84%, the responsibilitywas divided between teacher, parent, and child (severalcombinations).

Source of information. Fifty percent of the parents saidthat they did not know any person who gave them infor-mation about methylphenidate before their child wasstarted on methylphenidate. Twenty-two parents (88%)who knew such a person said that the information pro-vided by such persons helped them in their decision toaccept methylphenidate as a method of treatment, and 3(12%) said that this information encouraged them toreject methylphenidate treatment. The main source ofinformation regarding methylphenidate was from theneurologist for 80% of the participants.

A total of 46 parents (92%) consulted at least 1 addi-tional physician before deciding to start methylphenidate.One family (2%) consulted 4 doctors. Twenty parents(40%) also consulted nonmedical advisors, including psy-chologists, family members, teachers, and printed or elec-tronic sources.

Common knowledge. Only 10% of the parents had neverheard of methylphenidate before it was introduced totheir child. Sixty-eight percent had negative informationregarding methylphenidate before treatment initiation.Fifty-six percent were still exposed to negative informa-tion after methylphenidate was prescribed. Forty percentconsidered methylphenidate a narcotic drug.

After an average of 23.5 months of treatment, 80% ofthe parents considered methylphenidate a safe medica-tion, and 20% still considered it dangerous or addictive.

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1038 Journal of Child Neurology / Vol. 23, No. 9, September 2008

Fifty-six percent were still concerned about long-termeffects.

When asked about the mechanism of action of methyl-phenidate, 62% answered “it has an effect in the brain.”

Compliance. Ninety-eight percent considered the informa-tion provided by the neurologist the most effective factor foraccepting methylphenidate as a method of treatment.Ninety percent mentioned that the physician’s explana-tion and their belief that the medication was helpfulwere the most reassuring factors that helped them to becompliant.

Nine parents (18%) challenged the treatment andstopped giving methylphenidate to their children againstdoctor’s advice during the treatment period. However, allhave restarted the treatment, 8 out of 9 parents (88.88%)due to their belief that their children performed betterwith methylphenidate.

Thirty-eight percent considered their children fully com-pliant with physician’s instructions (taking methylphenidateexactly as ordered), 50% considered compliant most ofthe time, and 12% considered noncompliant, taking methyl-phenidate occasionally.

Ninety-two percent stated that the impression atschool was that methylphenidate was very effective.

Six percent did not reveal that their children weretreated with methylphenidate.

Sixty-four percent of the parents had concerns specif-ically about the use of methylphenidate (declaring thatthey were afraid of the medication). Fifty-four percentadmitted that a need for improvement in their children’seducational/behavioral condition was the main reasonthey asked for medical advice.

Twenty-six percent said that methylphenidate alone wasthe best method of treatment for their children with ADHD,and 74% believed that methylphenidate together with edu-cational or psychological support was the most effectivetreatment. Eighty percent considered methylphenidate apositively effective treatment for their children. When askedhow long did it take to actually start the treatment after doc-tor’s recommendation, 60% stated that the treatment wasstarted within days of recommendation, 26% stated that itwas started within months, and 14% stated that it was startedwithin years.

Children

Fifty questionnaires were completed by 40 boys and 10 girls.

Epidemiology. The epidemiology data are identical to theinformation provided by the parents.

Source of information. Sixty percent said they did not know anyperson who gave them information about methylphenidatebefore the medication was prescribed for them. Amongthose who knew such a person, 12 persons (60%) said that

the information provided by such persons helped them in theirdecision to accept methylphenidate as a method of treatment,and 3 persons (25%) said that they rejected methylphenidatebased on this information.

The main source of information regarding methyl-phenidate was from the neurologist for 60% of the partici-pants, and for 54%, the source of information was family,friends, or the media.

Common knowledge. Thirty-two percent had negative infor-mation regarding methylphenidate before the treatment ini-tiation. In all, 32% continued to be exposed to negativeinformation after methylphenidate was prescribed. Twenty-six percent considered methylphenidate a narcotic drug.

After an average of 23.5 months of treatment, 80% ofthe children considered methylphenidate a safe medica-tion, 86% considered methylphenidate effective, and 20%still considered it dangerous or addictive. Sixteen percentwere afraid of long-term effects.

Compliance. Ninety-two percent considered the informa-tion provided by the neurologist as the most effective fac-tor in their decision to accept methylphenidate as amethod of treatment.

Twenty-four percent reported self-administered chal-lenge (stopping the medication without guidance). All ofthese children reported restarting treatment due to theirbelief that they performed better with methylphenidate.

Forty-two percent considered themselves fully compli-ant with doctor’s instructions (taking methylphenidateexactly as ordered), 46% were compliant most of the time,and 12% took methylphenidate occasionally. Ninety per-cent stated that the impression at school was thatmethylphenidate was very effective.

Two percent did not reveal that they were treatedwith methylphenidate. The rest shared the informationwith family members (other than parents), friends, andschool.

Comparison between parents and children. The question-naires were completed in a pair-matched fashion (parentand child separately at the same time). To assess consis-tency, we have compared the results between individualparent and child and as a group (all parents and all chil-dren). In this comparison, we have found that opinions ofthe children and the parents were similar and consistent.

When asked whether methylphenidate was safe andeffective, whether treatment was challenged, and whatwere the most significant factors affecting compliance, theresults were the same (nonsignificant) between the 2 groups.Both parents and children considered methylphenidatetreatment safe and effective, with a small group whochallenged the treatment. Most of the parents and chil-dren considered the explanation given by the neurologistin addition to proven efficacy as the most influential fac-tor for compliance.

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Attitudes Toward Attention-Deficit Hyperactivity Disorder Treatment / Berger et al 1039

We have chosen to demonstrate only the significantdifferences in 3 of the questions (Table 1).

Significant differences were found for both exposureto negative information before and after the start ofmethylphenidate treatment and fear of long-term effects.In all these aspects, parents were more exposed and moreworried than the children were. These concerns caused18% to 24% to challenge the treatment and discontinuemethylphenidate on their own accord. All have restartedmethylphenidate treatment after a short period due todecline in academic performance in school.

Discussion

The aim of this study was to assess the attitudes towardmethylphenidate treatment among children who werediagnosed with ADHD and their parents, and to assessthe role of the neurologist in the treatment process.Attention-deficit hyperactivity disorder is considered a seriouspublic health problem by the Center for Disease Controland Prevention.11 The American Academy of Pediatricsannounced that stimulant medication should be recom-mended to improve outcomes in children with ADHD.3

In many chronic conditions, the attitudes of the patienttoward the medical treatment is essential for achieving thebest outcome.8-9,12 As in other chronic conditions, negativeattitudes can cause noncompliance and affect prognosis.10

Unlike other conditions, the medical treatment in ADHD isa subject of continuous debate in public opinion and inmedia.5,7 Methylphenidate hydrochloride is the most pre-scribed drug for treatment of ADHD in children.4

Most studies in this field discussed methods of treat-ment, type of stimulant, outcome assessment, and mater-nal or family measures.13-17 Most previous studiesassessing compliance and ADHD discussed family param-eters, specific dose, or mode of treatment. This study isunique because it focuses on the attitudes towardmethylphenidate treatment and the interactions betweenmethylphenidate-treated children, their parents, and theneurologist. We have assessed the attitudes by asking thechildren and the parents to complete separate, but gener-ally similar questionnaires, on the same occasion.

We have found that our population is suspicious ofmethylphenidate. The reassuring scientific literature,which confirms that methylphenidate has a beneficialrole in ADHD,18-21 is not effective in alleviating com-mon fear of the drug as expressed by many families whoconsult our clinic.

Only a minority of the parents had never heard of methyl-phenidate before they met the neurologist for the first time.Most of what they have heard were negative consequencesof this treatment method. Although the neurologist was themain source of information regarding methylphenidate,other sources were consulted, including friends, relatives,and media.

The exposure to negative information caused negativeattitudes toward methylphenidate. Only a minority of the par-ents did not ask for a second opinion. Many parents (40%)consulted nonmedical advisors. Forty percent waited monthsto years after the first recommendation by a physician beforethey had actually started their child on the treatment.

After an average of 23.5 months of methylphenidate treat-ment, most parents and children considered methylphenidatea safe and effective treatment modality for ADHD. Both par-ents and children considered the neurologist’s explanation asthe single main factor affecting their attitudes. Nevertheless,most of the population has concerns about possible long-term effects. The attitudes are consistent between thechildren and the parent groups. The parents suffer fromgreater exposure to pretreatment negative informationand are more concerned about long-term effects.

Our study has methodological limitations: this is not apopulation-based study, there is no control group, sample sizeis relatively small, and the pediatric population is relativelymature (average age = 12.6 years). All these factors cause a bias.

One may assume that this study population is the mostcompliant among our patients. But this bias indicated thatthe study results were even more significant because theydemonstrated that even the most compliant population ofparents and children was afraid of methylphenidate andexposed to negative information regarding methylphenidate,which affect their attitudes. Although experiencingmethylphenidate as safe and effective, many are concerneddue to scientifically unproved information about long-termadverse reactions.5,7 The concerns of the most compliantpopulation regarding methylphenidate indicate that theconcerns of other populations are probably even worse.We conclude that the leading cause of negative attitudestoward methylphenidate treatment is the fear of long-term effects. We also conclude that the role of the neu-rologist is crucial in helping children with ADHD and inhelping their parents with making treatment decisions,and in long-term continuity of care.

This emphasizes the importance of a detailed andaccurate explanation by the individual physicians regard-ing the effects of methylphenidate and expected outcome.We suspect that many children who need methylphenidate

Table 1. Comparison of Answers of the Parents and Children

Answers Children (%) Parents (%) Significance

Pretreatment negative 32 68 P < .002information

Negative information 32 56 P < .012after treatment initiation

Worry due to long-term 16 56 P < .0001adverse reactions

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treatment are not treated. We assume that thorough method-ological and neurological examinations and repeat follow-uptogether with supply of scientifically accurate and provedinformation for the public will affect the public attitudestoward methylphenidate and can affect future outcomein children with ADHD. Improving attitudes towardmethylphenidate treatment has an essential role in publichealth policy.

Future studies should focus on attitudes towardmethylphenidate treatment among larger and less com-pliant population and long-term effects among children.

Appendix AParent Questionnaire

Serial number:_____ Age (years):____ Sex: 1. Male 2. Female

1. Questionnaire filled by? A. Father B. Mother2. Does your child take Ritalin now? A. Yes B. NoIf yes → for how long?

A. Months (number)________B. Years (number)________

3. What type of school does your child attend?A. Regular schoolB. Special education class within regular schoolC. Special education school

4. Who is responsible for reminding the child to take Ritalin?A. The child aloneB. The parentsC. School staffD All the above, the child, the parents, and school staff

5. Did you ask for another advice after Ritalin was first rec-ommended by the pediatric neurologist?A. Yes B. No

If yes → whom did you consult with?A. Another physician (neurologist or not)B. PsychologistC. Family members/friendsD. TeachersE. Media sources: printed or electronic

6. How many doctors were consulted before treatment initi-ation? _________ (number)

7. Were you familiar with other person taking Ritalin beforetreatment initiation?A. Yes B. No

If yes → this fact:A. Helped me in accepting RitalinB. Caused rejection toward Ritalin

8. Whom or what do you consider as the main sources ofinformation for you regarding Ritalin treatment? (canmark more than 1)A. The pediatric neurologistB. Another physicianC. PsychologistD. Family members/friendsE. TeachersF. Media sources: printed or electronic

9. Who provided you with most of the information regard-ing Ritalin before treatment initiation? (only 1 option)A. Pediatric neurologistB. PediatricianC. PsychiatristD. PharmacistE. MediaF. Family/friends

10. Have you ever heard of Ritalin before it was offered toyour child?A. Yes B. No

11. Were you exposed to negative information regardingRitalin before treatment initiation?A. Yes B. No

12. Were you exposed to negative information regardingRitalin after treatment initiation?A. Yes B. No

13. My opinion is that Ritalin is?A. A safe medication.B. Cause dependenceC. A dangerous medication.

14. According to your opinion/knowledge, is Ritalin a nar-cotic drug?A. Yes B. No

15. Please describe shortly the mechanism of action ofRitalin (how does it work?):_________________________________________________________________________

16. Are you concerned due to possible long-term adversereactions of Ritalin?A. Yes B. No

17. What is the main option of treating ADHD according toyour experience?A. Ritalin.B. Psychological-behavioral treatment.C. Educational methods.D. Alternative methods.

18. Were you afraid of Ritalin before treatment initiation?A. Yes B. No

19. Regarding your child, Ritalin has:A. A positive effectB. A negative effectC. Does not matter

20. Have you ever stopped giving your child Ritalin on your ownaccord during treatment period against recommendations?A. Yes B. No

21. Have you restarted the treatment? A. Yes B. NoIf yes → why?

A. I was under pressure from school.B. Due to my impression of better function with Ritalin

22. What caused you to ask for medical advice regardingADHD?A. Pressure from schoolB. My impression that my child needs help in improving

educational/behavioral condition.C. My child asked for help.

23. What is the best method of treating ADHD according toyour own child (it is possible to mark combinations)?A. Ritalin.B. Psychological-behavioral treatment.C. Educational methods.

1040 Journal of Child Neurology / Vol. 23, No. 9, September 2008

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Attitudes Toward Attention-Deficit Hyperactivity Disorder Treatment / Berger et al 1041

D. Alternative methods.E. Combinations (please specify)____________

24. What is school’s opinion regarding the effect ofmethylphenidate on your child?A. Very effectiveB. Moderately effectiveC. Mildly effectiveD. Not effective at allE. Harmful

25. How long was the period since Ritalin was first recom-mended until treatment started?A. DaysB. MonthsC. Years

26. Is your child taking Ritalin exactly as expected?A. All the timeB. Most of the timeC. Only when there is a need (when they “feel like it”)

27. Who else knows that your child is taking Ritalin?A. NobodyB. FriendsC. TeachersD. SiblingsE. Extended family members

28. Does Ritalin help your child to perform better (in school,at home with friends)?A. Yes B. No

29. What factors helped you to accept Ritalin as treatment?(more than 1 option possible)A. The explanation given by the neurologistB. Information provided by friends/familyC. Information from media/booksD. Pressure from schoolE. Impression that Ritalin is helpful

30. What was the most influential factor helped you to acceptRitalin as treatment? (can mark only 1 option)A. The explanation given by the neurologistB. Information provided by friends/familyC. Information from media/booksD. Pressure from schoolE. Impression that Ritalin is helpful

Appendix BChild Questionnaire

Serial number:_____ Age (years):____ Sex: 1. Male 2. Female1. Are you taking Ritalin now? A. Yes B. NoIf yes → for how long?

C. Months (number)________D. Years (number)________

2. Who is responsible for reminding you to take Ritalin?A. Myself (alone)B. My parentsC. School staffD. Both my parents and myselfE. All the above, the child, the parents, and school staff

3. Were you familiar with other person taking Ritalin beforetreatment initiation?A. Yes B. No

If yes → this fact:A. helped me in accepting RitalinB. caused rejection towards Ritalin

4. Who provided you with information regarding Ritalin beforetreatment initiation? (can mark more than 1 option)A. Pediatric neurologistB. PediatricianC. PsychiatristD. PharmacistE. MediaF. Family/friends

5. Who provided you with most of the informationregarding Ritalin before treatment initiation? (only 1option)A. Pediatric neurologistB. PediatricianC. PsychiatristD. PharmacistE. MediaF. Family/friends

6. This informationA. Helped me to agree to start treatmentB. Caused me to reject the treatment

7. Were you exposed to negative information regardingRitalin before treatment initiation? A. Yes B. No

8. Were you exposed to negative information regardingRitalin after treatment initiation? A. Yes B. No

9. For you, Ritalin hasA. A positive effectB. A negative effectC. Does not matter

10. In my opinion, Ritalin is?A. A safe medicationB. AddictiveC. Dangerous medication

11. Are you concerned due to possible long-term adversereactions of Ritalin?A. Yes B. No

12. Do you think that Ritalin is narcotic? A. Yes B. No13. What factors helped you to accept Ritalin as treatment?

(can mark more than 1 option)A. The explanation given by the neurologistB. Information provided by friends/familyC. Information from media/booksD. Pressure from schoolE. Impression that Ritalin is helpful

14. What was the most influential factor helped you toaccept Ritalin as treatment? (please mark only 1 option)A. The explanation given by the neurologistB. Information provided by friends/familyC. Information from media/booksD. Pressure from schoolE. Impression that Ritalin is helpful

15. Have you ever stopped taking Ritalin on your own accordduring treatment period against recommendations?A. Yes B. No

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1042 Journal of Child Neurology / Vol. 23, No. 9, September 2008

16. Have you restarted the treatment? A. Yes B. NoIf yes → why?

A. I was under pressure from school.B. Due to my impression of better function with Ritalin

17. Are you taking Ritalin exactly as expected?A. All the timeB. Most of the timeC. Only when there is a need (when I “feel like it”)

18. What is school’s opinion regarding the effect of methyl-phenidate on you?A. Very effectiveB. Moderately effectiveC. Mildly effectiveD. Not effective at allE. Harmful

19. What is your parents opinion regarding the effect ofmethylphenidate on you?A. Very effective: both of themB. Very effective: just one of the parentsC. Not effective at all: both of themD. Not effective at all: just one of the parentsE. Harmful: both of themF. Harmful: just one of the parents

20. Who else knows that you are taking Ritalin?A. NobodyB. FriendsC. TeachersD. SiblingsE. Extended family members

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