Publication
Article
Satisfaction With Treatment for Attention-Deficit/Hyperactivity Disorder
Author(s):
Patient satisfaction with treatment services is animportant variable in ascertaining overall outcome;however, it is not a substitute for improving targetsymptoms and function. This article reviews the generaldeterminants of satisfaction, including the effectivenessof the treatment, patient expectations,acceptability of the specific treatment, and providerfactors as they apply to the treatment of attention-deficit/hyperactivity disorder (ADHD). Generally, parentsand teachers are more receptive to or prefernonmedication or behavioral therapies to medication,despite the established effectiveness of medication.Children are similarly ambivalent about medication.These preferences probably result from the loweracceptability of medication treatment for ADHD.Data does not establish greater patient satisfactionwith a particular medication class or formulation.However, parents and children/adolescents may preferthe newer longer-acting medications.Measuring satisfaction with ADHD treatmentserves several purposes, such as identifying acceptabletreatment modalities, defining patient expectationsfor treatment, and determining those providersthat may be deficient in communicating with theirclients.
(Am J Manag Care. 2004;10:S107-S116)
Attention-deficit/hyperactivity disorder(ADHD) is the most commonmental health problem affecting childrenand adolescents. Epidemiological studieshave reported from 3% to 8% of childrenand adolescents meet diagnostic criteria forADHD.1 In recent years, there has been anincrease in both office visits and stimulantprescriptions for ADHD.1-3 In part, thisincrease in patients seeking treatmentreflects the fact that ADHD can be successfullytreated.4 More than 200 controlledstudies have established the efficacy of stimulantmedications and specific behavioralinterventions for children and adolescentswith ADHD.5,6 In the past several years, severalnew medications have been marketed.While most of these are new versions or formulationsof stimulant medications (ie,methylphenidate [MPH] or amphetamine),others such as atomoxetine are new, nonstimulantdrugs approved for the treatmentof ADHD by the US Food and Drug Administration(FDA).
With all of these medication options, as wellas numerous nonmedication psychosocialtherapies to choose from, clinicians, particularlyprimary healthcare physicians, seekguidance and advice about which specificmedications, formulations, modalities, orcombinations of modalities to prescribe.Studies such as the National Institute ofMental Health Multimodal Treatment Studyof ADHD (MTA)7 and guidelines from theAmerican Academy of Pediatrics 4 andAmerican Academy of Child and AdolescentPsychiatry 5,6 may assist clinicians in theirclinical decision-making process. Althoughthe efficacy and safety of these modalitiesmay primarily determine the interventionselected, patient or parent satisfactionmay also be a primary consideration for theclinician.
The literature examining satisfaction forADHD treatments is limited; therefore, thisarticle will examine parent and patient satisfactionwith treatments for ADHD and similarbehavioral disorders in children andadolescents, using the literature for satisfactionof medical treatment and mental healthtreatments. The general determinants of satisfactionwith medical care and behavioralhealthcare of children and adolescents, satisfactionwith medication and specific medicationsfor ADHD, and finally differentialsatisfaction with various treatment modalitiesfor ADHD will be examined.
Why Is Satisfaction With Medical CareImportant?
Satisfaction with a particular treatment isone element of the perception of medicalcare that is often related to outcomes andquality.8 With the recent increase in emphasisfor providers of services to be moreaccountable and to provide both quality andeffective treatments, satisfaction with servicesis often the only variable measured, asit is believed to be an indicator of the qualityor effectiveness of services. More than90% of behavioral health organization representativesview consumer satisfaction asan important outcome and perhaps themost helpful for their purposes.9 Manyproviders now mandate the inclusion ofconsumer satisfaction measures as a way ofassessing the quality and perceived benefitsof a service.10,11
One of the primary reasons for consideringconsumer satisfaction is the large numberof people with diagnosable mentaldisorders who do not seek treatment or discontinuetreatment. Approximately 40% to60% of children and their families discontinuetreatment prematurely.12 Treatmentretention is a significant predictor of mentalheath treatment outcomes in youth with disruptivebehavior disorders.13 Satisfaction ispresumed to predict adherence or complianceto treatment.14,15 For example, studiesexamining compliance with ADHD medicationshow short-term compliance with medicationbetween 67% and 80%, althoughlonger-term compliance is lower with ratesof 56% to 60%.16 Because of increasedemphasis on consumer control and perceptionof their healthcare, satisfaction andpatient preference are increasingly importantdeterminants of care.
General Determinants of Satisfaction
Satisfaction does not correspond to a specificvariable such as outcome. Rather, satisfactionis composed of several primaryvariables or determinants. Satisfaction maybe influenced by culture, which affects one'sbeliefs, perceptions, and reactions to symptoms.Other determinants of satisfactioninclude demographic characteristics and theeffectiveness, social validity, or acceptabilityof the treatment, the expectations of theconsumer(s), and provider factors. Theimportance of each of these specific determinantsin contributing to treatment satisfactionlikely varies for the disorder beingtreated, the treatment modalities beingused, and the characteristics of the providerand client. Different factors predicting satisfactionmay be more important at differenttimes in the treatment process. For example,early treatment factors of satisfaction mayinclude aspects of the patient-clinician relationship(including expectations), whilesymptom resolution and functional statusmay be more important later on in thecourse of treatment.17
Demographic Characteristics. Olderpatients are generally more satisfied withtheir healthcare than younger patients.Similarly, parents show higher rates of satisfactionthan their children, particularly inthe treatment of ADHD.18 Other demographiccharacteristics such as sex seem to be lessimportant or unimportant.19,20
Several recent studies have reportedlower ADHD medication use among ethnicminorities.21-23 While these results may be anindication of reduced access or providerbias, minority attitudes about the use ofmedication may also have a role. Culturalfactors may affect the acceptance of andadherence to specific interventions.24Compared with Caucasian parents, non-Caucasian parents appear less likely to recommendmedication, less likely to prefermedication over counseling, and tend to beless satisfied with medication.25 Results fromthe MTA study show no difference betweenethnic/racial groups in initial satisfactionwith modality assignment or adherence asmeasured by attendance at parent managementtraining sessions.26
Effectiveness. Consumers should bemore satisfied with treatments that actuallywork (ie, produce change in the target symptomsor behaviors). Research on the relationshipbetween satisfaction and changes inother outcome domains in children's mentalhealth treatment studies is mixed.27,28Unfortunately, there are few studies examiningthe relationship between satisfaction andpatient/parent satisfaction. Several studiesof mental health treatment have found nocorrelation between satisfaction and pathologychange.29,30 Parents may be satisfiedwith and report more improvement with traditionalchild mental health treatment thanwith control treatment, despite there beingno significant differences in child functioningbetween the compared treatments.31When considering therapist-rated outcomes,the literature offers contradictory results,with some studies showing a correlationbetween outcomes and satisfaction,17 whileother studies show stronger relationshipsbetween satisfaction and patient ratings ofeffectiveness or outcome.32 Interestingly,parents and adolescents differed in their ratingsof satisfaction with treatments as symptomschanged. In one study of satisfactionwith mental health treatment, ratings of satisfactionfrom adolescents were correlatedwith symptom change, while parent satisfactionwas not correlated with symptomchange.29 Differences between the satisfactionand outcome relationship may be presentin different types of health problems,with a greater relationship between satisfactionand outcome or functional improvementin medical than with mentaldisorders.33 Some investigators have noted adistinction between perception of benefitand satisfaction,20 and insist that satisfactionshould not presume a specific treatment outcome.Unfortunately, some may be satisfiedwith ineffective and possible dangerousinterventions.34
In the case of ADHD, disproved treatmentssuch as diet changes and unprovedtreatments such as attention-training orherbal remedies may produce considerableparental satisfaction despite the fact thatthey may not be effective. As seen in theMTA study, satisfaction is greater for specifictreatments that are less effective than fortreatments (ie, medication) that are lessfavored. Many of the professional guidelinesof the American Academy of Pediatrics or theAmerican Academy of Child and AdolescentPsychiatry are only partially congruent withparent ADHD treatment preferences.35
Findings that suggest satisfaction is notalways related to outcomes or functionalimprovement may be related to patient orparent perception of improvement ratherthan more objective measures of improvementin symptoms or functioning. Severalfactors are likely to influence the perceptionof improvement. These include the patientor parent's acceptability of the specific treatmentmodality, as well as the general andspecific expectations for treatment.
Many of the same factors that apply toadult satisfaction apply to younger patients.For adolescents some of the strongest correlatesof satisfaction are attitudinal variablessuch as expectations for treatment and perceivedmotivation or choice for continuingtreatment.36,37
Social Validity and Acceptability. Inresponse to concerns about the difficultyof implementing experimental treatments,Wolf 38 and Kazdin 39 defined several conceptsunder the rubric of social validity.40The 3 components of social validity includetreatment goals, procedures, andoutcomes. In treatment outcome studies,social validity of an intervention must beestablished by demonstrating that the outcomesor goals are meaningful in the family'slife and that the goals and proceduresare acceptable or perceived relevant byfamilies or "consumers." The social validityof goals often relates to matching consumerexpectations. The "acceptability" ofa treatment procedure refers to the willingnessand ability of consumers to use orparticipate in the intervention. Despiteany intrinsic effectiveness of a treatment,if consumers are unwilling or unable to useit, the treatment does not have social validity,cannot be considered effective in thereal world, and is unlikely to produce satisfactionby its consumers. Such factors asperceived stigma of the disorder and treatment,as well as misconceptions about theetiology or nature of the disorder, couldaffect acceptability.
Acceptability may affect satisfaction witha particular treatment despite the efficacy ofthe treatment. A few studies of treatmentacceptability have indicated that parents aremore likely to enroll in a treatment regimenif they have a higher opinion of it.41Acceptability of a given treatment has notbeen shown to affect short-term compliancewith the treatment.41,42 However, thereappears to be a relationship between perceivedbarriers to treatment, including itemstapping treatment satisfaction, and treatmentdropout/noncompliance.12,43
Parents usually consider stimulant therapy,the cornerstone of ADHD treatment inthe United States, as a difficult modality toconsider and accept for their children.35 Ingeneral, when treating ADHD, parents ratebehavioral treatment as more acceptablethan medication.44 In the MTA study, 9% offamilies whose children were assigned to themedication-management-only group refusedassignment while only 3.4% assigned to thecombination medication and behavioralmanagement group refused assignment.7Parents rate behavioral treatments, in particularpositive behavioral techniques anddaily report cards, as much more acceptablethan medication treatment.41,42,45-48 Teachershave similar attitudes about the acceptabilityof behavioral treatment over medication.49,50 Some studies 45,48,50 have also shownthat ratings of combined treatments aresuperior to those of medication alone.
Why is this discrepancy present? Whilethe primary analyses of dimensional symptomsrelated to ADHD showed no significantdifference between the combined and medmanagement (only) groups, a number ofsecondary analyses have suggested thatcombined treatment was superior to medicationalone for the following outcomes: acomposite measure of symptomatic andimpairment-related functioning, normalizationof symptoms, parent-child relationships,and for multiply-comorbid children.51-55 Thebehavioral components of the MTA studywere largely designed to increase the positiveskills of ADHD children while medicationsreduce the negative or core ADHDsymptoms. Studies of parents with childrenwho have disruptive behavior disorders suggestthat these parents evaluate modalitiesthat focus on increasing acceptable behaviorsmore highly than modalities that reducenegative behavior.56
Acceptability can change over the courseof treatment. For example, patient or parentknowledge base about a disorder may affectacceptability. Some researchers have shownthat providing parents with more informationregarding ADHD and its treatmentincreases their acceptability ratings for medication.42,45 Acceptability may also beimproved by receiving the treatment.45,47 Inthe MTA study,7 most of the parents whowere initially disappointed at being assignedto the medication-management-only groupand not the combined behavioral or behavioraltreatment—only groups reported generalsatisfaction at the end of treatment.19Other studies have shown that acceptabilityratings increase when behavioral treatmentsare added to the medication.48,50,57 Similarly,providing a rationale for ADHD treatment bypresenting additional information abouttreatment modality options increases parents'acceptability for treatments involvingmedications but not for behavioral treatments.58 In the same study, this effect wasnot observed for teachers. A parent's experiencewith treatment may influence acceptability.A history of ADHD medication usepredicted an increased willingness to usemedication, while a history of counselingpredicted an increased willingness to useboth medication and counseling.59 A positiveexperience with medication or treatmentmay be a critical determinant of acceptability.Comparing the acceptability ofbehavioral, medication, and combinationtreatment, parents of children with ADHDrate the acceptability of the medicationtreatments higher than parents of childrenwithout ADHD.58
Expectations. Expectations of a medicalencounter may also influence satisfaction.Of course, unfulfilled expectations can leadto lower compliance, which can lead tolower symptom relief. Several studies indicatethat attitudes and expectations aboutmental health services are related to satisfactionwith service. Satisfaction is higherwhen expectations are met 18,60-63 and lowerwhen expectations are not met.64 Whenexpectations are positive, satisfaction ishigher.36,37
Expectations may affect satisfactionthrough the acceptability of a treatmentmodality. Parental ambivalence about medicationtreatment may be driven by thesources of information about ADHD and itstreatment. Prior to treatment, psychoeducation,and informed consent, a parent's information and knowledge of ADHD are primarilygleaned from the popular media in whichADHD medications have been the source ofmuch controversy.35 Despite knowing thattheir children need treatment, parents maybe wary about some ADHD modalities, especiallymedication. They may expect unacceptableadverse effects or fear social stigmathat they expect would be related to medicationuse.
Provider Factors. Mental healthcareconsumers identified bonding with theprovider along with the provider's knowledgeand competence as the most importantfactors that contribute to consumer satisfaction.65 Such factors are known to be partof clinicians' "bedside manner." Patient satisfactionis strongly influenced by patient-providercommunication variables, such asreceiving an explanation of symptom causeand likely duration of treatment.62 Studies,such as by Gage and Wilson,57 demonstratethe importance of provider psychoeducationin changing parental attitudes about treatment.Satisfaction related to provider factorsmay be largely fulfilled through meeting thepatient's expectations or modifying thoseexpectations through psychoeducation.
Provider or physician knowledge andcompetence are also critical. In the MTAstudy, the medication management conditiondid much better than those assigned tothe community condition, despite the factthat most of the community assigned to controlsreceived medication.7
This difference was attributed to the likelyhigher quality of care delivered by theMTA pharmacotherapies that used the mostcurrent procedures and knowledge base. Asmuch of ADHD management concerns medicationmanagement, future research shouldstudy determinants of satisfaction with thispractice.
Satisfaction With Specific ADHDMedications
Clinical trials of medications for ADHD,including both phase 3 and postmarketing ofspecific medications, often include parentsatisfaction as a variable. Parents are askedhow satisfied they are with the specific medicationtreatment and, if previously treated,how satisfied they were with the medicationtreatment compared with the previous treatment?Satisfaction ratings by parents whowere very or moderately satisfied in recenttrials range from 87%66 to 62%.67 Recentstudies of stimulant medication have reportedrates of satisfaction with medicationtreatment,67-69 with 50% to 74% of parentsand teachers making positive endorsementsof satisfaction for treatment that involvesmedication alone.
Unfortunately, little may be gained fromthese satisfaction ratings of medicationswithin the context of clinical trials for severalreasons. First, children and their parentsparticipating in a medication triallikely represent a biased sample. Few wouldagree to participate in a study if they weresatisfied with their previous medication ortreatment, which may be the control orcomparison treatment. Many families arehappy to receive treatment or at least anevaluation by "experts."70 Johnston andFine71 reported higher satisfaction with adouble-blind, placebo-controlled medicationtrial than with typical clinical procedures.Second, there are few well-controlled,blinded, head-to-head comparisons betweenrigorously determined equivalent doses ofthe comparative medications (ie, MPH vsamphetamine or between different formulationsof MPH), particularly those thatcompare relative satisfaction. One prominentexception is a double-blind, doubledummycomparison between once-dailyosmotic release oral system (OROS) MPH(Concerta) and 3-times-daily MPH immediaterelease (IR), in which 47% of parentspreferred OROS MPH, 31% chose the MPHIR 3 times daily, and 15% chose their previousMPH regimen.72 In 2 open-labelstudies of OROS MPH, about 85% of parentswere satisfied, very satisfied, orextremely satisfied with once-daily OROSMPH in the first months of therapy. In thesecond year of the study, 97% to 99% ofparents were satisfied with once-dailyOROS MPH. This suggests that long-termparent satisfaction can be maintained withonce-daily OROS MPH therapy.73
However, these results involve a forcedpreference rather than satisfaction with aparticular medication or treatment. Third,medication trials may produce high levels ofsatisfaction for no pharmacological reasons(ie, provider factors, etc). Finally, consumerstypically report high levels of satisfactionin such trials and there is often littlevariation.10
To make more salient conclusions fromclinical trials regarding the level of satisfactionacross treatments, investigators mustincorporate better designs relating to satisfactionmeasurement. The new long-actingmedications for ADHD do improve complianceby eliminating the disadvantages ofmultiple-day dosing.72,73 Evidence fromother pediatric therapeutic areas supportsthe value of daily dosing in improving compliance.16 Clinical experience suggests thatmost parents prefer the once-daily preparations,primarily for convenience reasons.16
The introduction of nonstimulant medications,such as the recently FDA-approvedatomoxetine, as well as other nonstimulantsmay provide an alternative for those patientswho experience stimulant-induced insomniaor tics. In addition, nonstimulants may beappropriate for individuals at risk of stimulantabuse.74 However, more research isneeded to fully understand the implicationsof nonstimulants and their role in affectingpatient and parent satisfaction.
Satisfaction With ADHD Medication versusNonmedication Treatments
Pelham and colleagues20 examined treatmentsatisfaction and global improvementafter 14 months of treatment as part of theMTA study.7 Parents of children randomlyassigned to the behavioral or combined(behavioral plus medication) treatment conditionsreported more satisfaction and wereless likely to decline or to drop out of treatmentthan parents of children assigned tomedication only. Teachers were also moresatisfied with treatments that included abehavioral component than with medicationalone, and they indicated that the behavioraltreatments made them better able to dealwith ADHD in the classroom than did medicationalone. These results are consistentwith parent perception that children in thecombined group were more improved thanthose in the medication-only or other comparisongroups. Prior to the onset of treatment,more parents of children assigned tothe combined group were generally or verypositive about their assignments and fewerwere disappointed when compared to thoseassigned to the medication-only group.However, outcomes were best for the medication-only group.
Positive attitudes about medications areassociated with greater satisfaction.25 Astudy by Sleator and associates 75 found thata majority of children taking stimulant medicationdisliked taking medication, althoughthis may reflect a general dislike of medicine.However, another study reported thatmost children treated for ADHD with medicationview medication favorably, but alarger percentage of children versus parentsviewed medication in a negative light.18However, this was not once-daily medicationand could have affected the results.Provision of education and informationabout ADHD and medication is often seen asan important aspect of the treatmentprocess. However, a higher level of knowledgeof ADHD may not affect parents' opinionof medication or predict treatmentcompliance, despite predicting an increasedwillingness to accept both medication andnonmedication treatments.36,37 These studiessuggest that knowledge alone may notimprove acceptability. It is possible that thestigma or philosophic aversion against medicationfor behavior problems in most societiesis sufficient to create ambivalenceabout medication or, at least, medicationtreatment without any medication modalities.Once-daily treatments have demonstratedbetter compliance rates and greatersatisfaction and increased preference. In 2laboratory school studies with double-blind,double-dummy tablets for MPH IR 3 timesdaily and OROS MPH, parents showed astrong preference for OROS MPH. Becauseoverencapsulated tablets were taken forboth drugs throughout the study, the preferencedid not reflect the convenience ofonce-daily dosing.72,76
What Should Be Done About Satisfactionfor ADHD Treatments
As with treatment for other mental healthproblems, satisfaction should not serve as aproxy for treatment outcome in ADHD. Expensive, unsupported, or disproved therapiesfor ADHD, such as diet, attention training,electroencephalogram, and/or biofeedback,may produce significant levels of satisfaction,yet little in the way of objectiveimprovement. Outcomes should be based onimprovements in target symptoms and/orfunctioning. However, treatments offeredmust not only be effective, but should havesocial validity and acceptability as well.
Measuring satisfaction in the case ofADHD treatment serves several purposes.First, parent, child/adolescent, or teachersatisfaction may identify modalities that aremore acceptable, and hence, may predictbetter compliance or adherence. Once-dailymedication has demonstrated this aswell.72,73 These preferences may be particularlyimportant when there are several effectivemodality options. In treating ADHD,despite the seeming superiority of medicationas a single modality, the literature suggeststhat multimodal treatment, whichcombines the preferred treatment, behavioraltherapy, with medication treatmentthat produces more parental, patient, andsocietal ambivalence may be optimal forboth outcome and satisfaction. Second, satisfactionmay relate to physicians, somewith poor knowledge and skills and otherswith poor "bedside manner" who, whileknowledgeable and competent, neverthelessfail to inspire a family's confidence. Despiteimprovements in symptoms and functioning,families may prematurely end treatmentwith such providers or even disenroll inhealth insurance plans. Finally, satisfactionmeasures may allow both provider and planto identify expectations of their patients.Providers can then address these expectationsthrough the treatment plan and selectionof acceptable modalities or throughpsychoeducation. Most patients will appreciatewhen providers are listening to them andtheir concerns.
Providers must ask about specific expectationswhen starting assessment and treatmentand prompt families to reply whetherthese expectations are being met or not onan ongoing basis during treatment. Anticipatingwhat effective modalities may be preferred,the provider should facilitate theprovision of these modalities or the referralto qualified providers of these modalities.Managed care organizations (MCOs) canalso anticipate and identify preferredmodalities and facilitate their access anduse. In addition to examining clinical outcomes,MCOs should also survey theirenrollees regarding satisfaction in an objectivemanner.
Clinically, for ADHD, the existing literaturepoints to several more specific recommendations.First, as noted above, providersneed to be aware of consumer preferencesand expectations. Second, providers may beable to change such preferences throughcareful, sensitive psychoeducation proceduresand informed consent. Third, providerswith the skills and knowledge of bestpractices in ADHD treatment will likelydeliver better care than those who do nothave these skills. Improving the quality ofADHD-related practice involves followingbest-evidence practice through clinicalguidelines for the evaluation and managementof ADHD as provided by the AmericanAcademy of Pediatrics and the AmericanAcademy of Child and Adolescent Psychiatry.4-6 Finally, providers should respect thefact that consumers have specific preferences.Even if medication or combined medicationand behavioral treatment aresuperior to behavioral treatment alone,behavioral treatment alone can be effective.
Future Research
Although the existing literature on satisfactionwith ADHD treatment and with treatmentof mental health problems can providevaluable lessons for today's providers, futureresearch will have to anticipate the importanceof satisfaction research and the needfor establishing the social validity of a treatmentmodality. Although several satisfactionmeasures exist, the development of consistent,uniform variables to compare acrossstudies would be useful. All clinical trialsshould build in satisfaction measures withthe same methodological rigor as primaryoutcome variables. Studies should considerand study whether participants assigned totheir a priori preference do better than thosewho are not assigned to their preferred treatment.Finally, treatment researchers shouldconsider alternatives to random assignment,such as experimental models where participantsare assigned to specific treatment conditionsor modalities according to their preferences.
Conclusion
ADHD is a common disorder of children,adolescents, and even adults. With the manytypes of modalities, medication and nonmedication,as well many types of medicationsto choose from, consumer satisfactionis an important consideration for consumers,providers, and MCOs. Consumersatisfaction should take its place beside bestpractices for measuring optimal outcomes inguiding treatment selection and procedures.
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