Restricted accessResearch articleFirst published online 2020-3
Exploring Factors Influencing Medication Adherence From Initiation to Discontinuation in Parents and Adolescents With Attention Deficit Hyperactivity Disorder
This study explored factors influencing parents’ and adolescents’ decisions to initiate, continue, and discontinue medication for attention deficit hyperactivity disorder (ADHD). Three focus groups were conducted with parents (n = 23) of children with ADHD, and 2 with adolescents diagnosed with ADHD (n = 11). Parents and adolescents independently discussed the complexities surrounding their decisions to adhere to ADHD medication. Parents’ negative beliefs about medication (fear of side effects) discouraged them from initiating therapy. Once initiated, parents struggled in balancing the need to medicate (improvements in learning and behavior) and concerns (weight loss, perceived delayed development) about the medication. Parents who had more concerns about the medication were more in favor of discontinuation. For adolescents, the desire for self-expression without being medicated was the primary factor determining nonadherence and/or discontinuation of the medication. Adolescents’ medication-related concerns were relatively different from the parents. Phase- and group-specific interventions are required to improve medication adherence in people with ADHD.
BrinkmanWBShermanSNZmitrovichAR, et al. In their own words: adolescent views on ADHD and their evolving role managing medication. Acad Pediatr. 2012;12:53-61.
2.
PolanczykGde LimaMSHortaBLBiedermanJRohdeLA.The worldwide prevalence of ADHD: a systematic review and meta-regression analysis. Am J Psychiatry. 2007;164:942-948.
3.
WillcuttEG.The prevalence of DSM-IV attention-deficit/hyperactivity disorder: a meta-analytic review. Neurotherapeutics. 2012;9:490-499.
4.
FayyadJDe GraafRKesslerR, et al. Cross-national prevalence and correlates of adult attention-deficit hyperactivity disorder. Br J Psychiatry. 2007;190:402-409.
5.
ThomasRSandersSDoustJBellerEGlasziouP.Prevalence of attention-deficit/hyperactivity disorder: a systematic review and meta-analysis. Pediatrics. 2015;135:e994-e1001.
6.
LawrenceDJohnsonSHafekostJ, et al. The Mental Health of Children and Adolescents. Report on the Second Australian Child and Adolescent Survey of Mental Health and Wellbeing. Canberra, Australia: Department of Health; 2015.
7.
SayalKPrasadVDaleyDFordTCoghillD.ADHD in children and young people: prevalence, care pathways, and service provision. Lancet Psychiatry. 2018;5:175-186.
8.
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (DSM-5). 5th ed.Washington, DC: American Psychiatric Association; 2013.
9.
BachmannCJWijlaarsLPKalverdijkLJ, et al. Trends in ADHD medication use in children and adolescents in five Western countries, 2005-2012. Eur Neuropsychopharmacol. 2017;27:484-493.
10.
BurcuMZitoJMMetcalfeLUnderwoodHSaferDJ.Trends in stimulant medication use in commercially insured youths and adults, 2010-2014. JAMA Psychiatry. 2016;73:992-993.
11.
ManKKIpPHsiaY, et al. ADHD drug prescribing trend is increasing among children and adolescents in Hong Kong. J Atten Disord. 2017;21:1161-1168.
12.
BrettJKarangesEADanielsB, et al. Psychotropic medication use in Australia, 2007 to 2015: changes in annual incidence, prevalence and treatment exposure. Aust N Z J Psychiatry. 2017;51:990-999.
13.
HozaBJohnstonCPillowDRAscoughJC.Predicting treatment response for childhood attention-deficit/hyperactivity disorder: introduction of a heuristic model to guide research. Appl Prev Psychol. 2006;11:215-229.
14.
GajriaKLuMSikiricaV, et al. Adherence, persistence, and medication discontinuation in patients with attention-deficit/hyperactivity disorder—a systematic literature review. Neuropsychiatr Dis Treat. 2014;10:1543-1569.
15.
AhmedRAslaniP.Attention-deficit/hyperactivity disorder: an update on medication adherence and persistence in children, adolescents and adults. Expert Rev Pharmacoecon Outcomes Res. 2013;13:791-815.
16.
SkoglundCBrandtLAlmqvistC, et al. Factors associated with adherence to methylphenidate treatment in adult patients with attention-deficit/hyperactivity disorder and substance use disorders. J Clin Psychopharmacol. 2016;36:222-228.
17.
VrijensBDe GeestSHughesDA, et al; ABC Project Team. A new taxonomy for describing and defining adherence to medications. Br J Clin Pharmacol. 2012;73:691-705.
18.
HorneR. Compliance adherence and concordance. In: TaylorKMGHardingG, eds. Pharmacy Practice. London, England: Taylor & Francis; 2001:165-184.
19.
HorneRChapmanSCParhamRFreemantleNForbesACooperV.Understanding patients’ adherence-related beliefs about medicines prescribed for long-term conditions: a meta-analytic review of the Necessity-Concerns Framework. PLoS One. 2013;8:e80633.
20.
AtzoriPUsalaTCarucciSDanjouFZuddasA.Predictive factors for persistent use and compliance of immediate-release methylphenidate: a 36-month naturalistic study. J Child Adolesc Psychopharmacol. 2009;19:673-681.
21.
BarnerJCKhozaSOladapoA.ADHD medication use, adherence, persistence and cost among Texas Medicaid children. Curr Med Res Opin. 2011;27(suppl 2):13-22.
22.
BhangSYKwackYSJoungYS, et al. Factors that affect the adherence to ADHD medications during a treatment continuation period in children and adolescents: a nationwide retrospective cohort study using Korean Health Insurance Data from 2007 to 2011. Psychiatry Investig. 2017;14:158-165.
23.
ChenCYYehHHChenKHChangISWuECLinKM.Differential effects of predictors on methylphenidate initiation and discontinuation among young people with newly diagnosed attention-deficit/hyperactivity disorder. J Child Adolesc Psychopharmacol. 2011;21:265-273.
24.
EmilssonMGustafssonPAÖhnströmGMarteinsdottirI.Beliefs regarding medication and side effects influence treatment adherence in adolescents with attention deficit hyperactivity disorder. Eur Child Adolesc Psychiatry. 2017;26:559-571.
25.
FaraoneSVBiedermanJZimmermanB.An analysis of patient adherence to treatment during a 1-year, open-label study of OROS® methylphenidate in children with ADHD. J Atten Disord. 2007;11:157-166.
26.
ThiruchelvamDCharachASchacharRJ.Moderators and mediators of long-term adherence to stimulant treatment in children with ADHD. J Am Acad Child Adolesc Psychiatry. 2001;40:922-928.
27.
WehmeierPMDittmannRWBanaschewskiT.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. 2015;7:165-174.
28.
AhmedRBorstJWeiYCAslaniP.Parents’ perspectives about factors influencing adherence to pharmacotherapy for ADHD. J Atten Disord. 2017;21:91-99.
29.
CormierE.How parents make decisions to use medication to treat their child’s ADHD: a grounded theory study. J Am Psychiatr Nurses Assoc. 2012;18:345-356.
30.
ColettiDJPappadopulosEKatsiotasNJBerestAJensenPSKafantarisV.Parent perspectives on the decision to initiate medication treatment of attention-deficit/hyperactivity disorder. J Child Adolesc Psychopharmacol. 2012;22:226-237.
31.
FiksAGMayneSLocalioARAlessandriniEAGuevaraJP.Shared decision-making and health care expenditures among children with special health care needs. Pediatrics. 2012;129:99-107.
32.
HébertJPolotskaiaAJooberRGrizenkoN.Adherence to psychostimulant medication in children with attention-deficit/hyperactivity disorder: the role of attitudes. J Can Acad Child Adolesc Psychiatry. 2013;22:317-323.
33.
KitzingerJ.The methodology of focus groups: the importance of interaction between research participants. Sociol Health Illn. 1994;16:103-121.
34.
TongASainsburyPCraigJ.Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19:349-357.
35.
ToomeySLSoxCMRusinakDFinkelsteinJA.Why do children with ADHD discontinue their medication?Clin Pediatr (Phila). 2012;51:763-769.
36.
KhanMUAslaniP.A review of factors influencing the three phases of medication adherence in people with attention-deficit hyperactivity disorder. J Child Adolesc Psychopharmacol. 2019;29:398-418.
37.
WangLJYangKCLeeSY, et al. Initiation and persistence of pharmacotherapy for youths with attention deficit hyperactivity disorder in Taiwan. PLoS One. 2016;11:e0161061.
38.
KruegerRCaseyMA.Focus Groups: A Practical Guide for Applied Research. 3rd ed.Thousand Oaks, CA: Sage; 2000.
39.
FuschPINessLR.Are we there yet? Data saturation in qualitative research. Qual Rep. 2015;20:1408-1416.
40.
TibaldiGClatworthyJTorchioEArgenteroPMunizzaCHorneR.The utility of the Necessity-Concerns Framework in explaining treatment non-adherence in four chronic illness groups in Italy. Chronic Illn. 2009;5:129-133.
41.
ClatworthyJBowskillRParhamRRankTScottJHorneR.Understanding medication non-adherence in bipolar disorders using a necessity-concerns framework. J Affect Disord. 2009;116:51-55.
42.
DodangiNVameghiRHabibiN.Evaluation of knowledge and attitude of parents of attention deficit/hyperactivity disorder children towards attention deficit/hyperactivity disorder in clinical samples. Iran J Psychiatry. 2017;12:42-48.
43.
CharachASkybaACookLAntleBJ.Using stimulant medication for children with ADHD: what do parents say? A brief report. J Can Acad Child Adolesc Psychiatry. 2006;15:75-83.
44.
JacksonDPetersK.Use of drug therapy in children with attention deficit hyperactivity disorder (ADHD): maternal views and experiences. J Clin Nurs. 2008;17:2725-2732.
45.
DosreisSZitoJMSaferDJSoekenKLMitchellJWJrEllwoodLC.Parental perceptions and satisfaction with stimulant medication for attention-deficit hyperactivity disorder. J Dev Behav Pediatr. 2003;24:155-162.
46.
AngstDBDeatrickJA.Involvement in health care decisions: parents and children with chronic illness. J Fam Nurs. 1996;2:174-194.
47.
Hämeen-AnttilaKHalonenPSiponenSHolappaMAhonenR.Parental attitudes toward medicine use in children in Finland. Int J Clin Pharm. 2011;33:849-858.
48.
BussingRKoro-LjungbergMNoguchiKMasonDMayersonGGarvanCW.Willingness to use ADHD treatments: a mixed methods study of perceptions by adolescents, parents, health professionals and teachers. Soc Sci Med. 2012;74:92-100.
49.
DosreisSMychailyszynMPEvans-LackoSEBeltranARileyAWMyersMA.The meaning of attention-deficit/hyperactivity disorder medication and parents’ initiation and continuity of treatment for their child. J Child Adolesc Psychopharmacol. 2009;19:377-383.
50.
HansenDLHansenEH.Caught in a balancing act: parents’ dilemmas regarding their ADHD child’s treatment with stimulant medication. Qual Health Res. 2006;16:1267-1285.
51.
A 14-month randomized clinical trial of treatment strategies for attention-deficit/hyperactivity disorder. Multimodal Treatment Study of Children with ADHD. Arch Gen Psychiatry. 1999;56:1073-1086.
52.
PliszkaS; AACAP Work Group on Quality Issues. Practice parameter for the assessment and treatment of children and adolescents with attention-deficit/hyperactivity disorder. J Am Acad Child Adolesc Psychiatry. 2007;46:894-921.
53.
WolraichMLBickmanLLambertEWSimmonsTDoffingMA.Intervening to improve communication between parents, teachers, and primary care providers of children with ADHD or at high risk for ADHD. J Atten Disord. 2005;9:354-368.
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