ASD and Medication Adherence: An Opportunity for Pharmacist Intervention
Unfortunately, medication adherence in children with ASD is poor, particularly among children with chronic conditions or comorbid mental health conditions.
With an estimated prevalence of 1 in 68 American children, autism spectrum disorder (ASD) has become a common condition.1 Quality of life in ASD is often impacted by maladaptive behaviors such as irritability, aggression, self-injury, inattention, hyperactivity, and anxiety.2 When behavioral and educational strategies fail, drug therapy is often beneficial for these behaviors. Recent data suggest that up to 79% of children and adolescents diagnosed with ASD have received at least one psychotropic drug.3 Considering these numbers, many pharmacists will be involved in the care of children or adults with ASD in their community.
Pharmacists have a unique opportunity to impact the treatment of maladaptive behaviors associated with ASD, such as agitation or anxiety, through therapy optimization and counseling.4
Unfortunately, medication adherence in children with ASD is poor, particularly among children with chronic conditions or comorbid mental health conditions. A recent study among 628 children with ASD reported that the majority of children were nonadherent to pharmacotherapy. As measured by the proportion of days covered method, adherence rates were 44% for attention-deficit hyperactivity disorder (ADHD) medications, 40% for antidepressants, and 52% for antipsychotics.5 The most significant predictors of adherence were aggressive behaviors and abnormalities in eating, drinking, and/or sleeping, co-occurring ADHD, and a higher Medication Regimen Complexity Index. Perceived family burden of treatment and higher severity of ASD have also been reported to negatively impact treatment adherence.6
Pharmacists are well-equipped to positively impact medication adherence among children through counseling and building a trusting relationship with the family. A recent prospective randomized open-label study investigated the impact of providing psychiatric specialty pharmacist intervention on reducing drug-related problems among children with ASD-related maladaptive behaviors. At week 8, the total number of patients with at least one resolved drug-related problem (DRP) was 13 (52%) in the intervention group and 4 (16%) in the control group (P=.016, n=25).7 Improper drug selection, medication nonadherence, and subtherapeutic dosage were the most common DRPs. The interventions made by the pharmacist, including selection of antipsychotic agent, dosage adjustment, and provision of individualized drug counseling, resulted in reduced DRPs in patients with ASD, which in turn led to improved disruptive behavior.7
With the recent increased prevalence of ASD and the common use of psychotropic drugs in this population, the impact of nonadherence to drug therapy for maladaptive behaviors will continue to be an issue. It is essential that pharmacists employ innovative, practical strategies to improve the quality and impact of patient encounters. Three key aspects should be addressed when developing the strategies to improve adherence in children with ASD:
- What is the caregiver and patient’s current understanding of ASD and the treatment of maladaptive behaviors associated with the condition?
- What barriers are present that may affect this specific patient’s adherence to treatment?
- What services can the pharmacist provide that may improve patient adherence?
Assessing Knowledge, Health Beliefs Related to ASD
The first aspect of improving adherence in this patient population is identifying the caregiver’s understanding of ASD and appropriate treatment. The pharmacist must communicate realistic expectations to the family. Families must understand that there is no drug treatment that will cure or directly treat ASD. Drug therapies have only proven to improve maladaptive behaviors, and will not improve the child’s social skills and ability to communicate. Many families have health beliefs that impact their willingness to utilize medications as part of a comprehensive ASD treatment plan.8 For example, some families may be more willing to pursue complementary and alternative therapies over prescription medications. Other families may have perceptions regarding the causes and risk factors associated with ASD that lead to distrust of providers (i.e. vaccinations).9 Awareness of the family’s knowledge, health beliefs, treatment biases, and preferences allows the pharmacist to develop rapport and facilitates shared decision making. The process of learning these preferences provides an opportunity to express empathy, assess knowledge gaps, and tailor a plan for education.
Identifying Barriers to Medication Adherence
Second, the pharmacist should identify how the patient communicates and identify barriers to medication adherence. Some individuals with ASD have a high level of cognition, while others may not be able to communicate as effectively. An inventory of the patient’s communication needs and preferences should be completed, taking into account developmental status, learning difficulties, and communication preferences. A key component of improving learning and growth for those with ASD is to “decode” the message communicated by the maladaptive behavior(s) and adapt the treatment plan accordingly.10,11 Interventions to improve communication may include use of technology, avoidance of smells, textures, colors, and tastes that the child is averse to, and provision of tools to address sensory overload. Sensory overload occurs when one or more of the body's senses experiences over-stimulation (eg texture, flavor, smell), and is a common trigger among autistic children for increasing disruptive and aggressive behaviors.9 Consideration of sensory aversions and consideration of the child’s daily schedule aids in rational treatment selection. Clear, simple language (ie simple instructions with concrete steps) should be used when counseling the patient. Allow the child to set the space boundary, but make an effort to be at their level speaking directly to the child and minimizing accessory movements and sounds.12,13 Parents and other caregivers must also be involved in all conversations. Providing an individualized conversation with caregivers regarding medication profiles and therapy options strengthens the patient-provider relationship and increases caregiver buy-in. In a study among parents of children with ASD, higher levels of shared decision making resulted in significantly greater parent satisfaction with the overall quality of their child’s health care (P≤.0001).14
Lastly, the pharmacist must employ interventions to increase the chances of medication adherence. Pharmacists should identify dosage forms that facilitate ease of medication administration. Setting realistic expectations at initiation of treatment is imperative. In the treatment of maladaptive behaviors, the full effect of drug therapy may not be observed for weeks or months. Families should be aware of this time frame and understand that doses may need to be individualized over time for each patient. Families should be aware that no drug is known to improve the core deficits associated with ASD, particularly the social communication deficits. Families should also be aware of potential adverse effects before treatment is started. For patients who struggle with taking medications, positive reinforcement techniques may encourage medication use.15 Simple changes in medication administration times can make all the difference. For families with financial concerns, the pharmacist should identify resources to minimize direct costs of therapy and increase access to various therapies. Complementary and alternative treatments are commonly used in children with ASD. Pharmacists must inquire about these treatments and provide targeted caregiver education regarding the appropriate use and adverse effects.10 Pharmacists should be understanding and supportive of families that pursue these treatments, so long as they do not pose significant risks to the patient. In cases where patients may not be open to using medications because of concern for artificial dyes, sweeteners, or gluten, pharmacists can help to identify alternative dosage forms to minimize exposure to these excipients.
Asking the Foundational Question of Medication Therapy
While more research is needed to identify evidence-based interventions to improve adherence in patients with ASD, simplification of the child’s medication regimen is one intervention that will consistently improve adherence. Pharmacists must always ask the foundational question associated with the care of individuals with behavioral disorders: Is medication really necessary? As part of the multidisciplinary care team, the pharmacist must navigate the underlying causes and exacerbating factors of the behavioral concerns and encourage optimization of cognitive behavioral therapy, speech therapy, educational interventions, and other non-pharmacologic therapies at every encounter. As pharmacists, we must proactively assess patient outcomes, as drugs may worsen maladaptive behaviors in some cases. Ultimately, there is no health care practitioner with the resources, ability, and opportunity to improve medication adherence in patients with ASD like the pharmacist. It is time for our profession to rise to the occasion for individuals with ASD.
The authors are: Laura K. Sjoquist, a PharmD Candidate, 2018 and Justin Cole, PharmD, BCPS, of Cedarville University School of Pharmacy
- New Data on Autism: Five Important Facts to Know. CDC. Available from: https://www.cdc.gov/features/new-autism-data/index.html. Accessed January 24, 2017.
- Cole J. Autism spectrum disorder. In: Murphy JE, Lee MW eds. Pharmacotherapy Self-Assessment Program, 2015. Book 2. CNS/Pharmacy Practice. Lenexa, KS: American College of Clinical Pharmacy, 2015:201-224.
- Gerhard T, Chavez B, Olfson M et al. National patterns in the outpatient pharmacological management of children and adolescents with autism spectrum disorder. J Clin Psychopharmacol. 2009;29:307-10.
- Lyons KG. The pharmacist’s role in treatment options for autism. Pharmacy Choice. Accessed August 18, 2017. Available from: http://www.pharmacychoice.com/education/diseases/autism.cfm?disease=autism.
- Logan SL, Carpenter L, Leslie RS, et al. Rates and predictors of adherence to psychotropic medications in children with autism spectrum disorders. J Autism Dev Disord. 2014;44(11):2931-2948. doi: 10.1007/s10803-014-2156.0.
- Hock R, Kinsman A, Ortaglia A. Examining treatment adherence among parents of children with autism spectrum disorder. Disabil Health J. 2015;8(3):407-413.
- Wongpakaran R, Suansanae T, Tan-Khum T, Kraivichian C, Ongarjsakulman R, Suthisisang C. Impact of providing psychiatric specialty pharmacist intervention on reducing drug-related problems among children with autism spectrum disorder related to disruptive behavioural symptoms: a prospective randomized open-label study. J Clin Pharm Ther. 2017;42(2):329-336. doi: 10.1111/jcpt.12518.
- Zuckerman KE, Lindly OJ, Nicolaidis C. Parent health beliefs, social determinants of health, and child health services utilization among U.S. school-age children with autism. J Dev Behav Pediatr. 2015;35(3):146-157.
- Modabbernia A, Velthorst E, Riechenberg A. Environmental risk factors for autism: an evidence-based review of systematic reviews and meta-analyses. Mol Autism. 2017;8:13. doi: 10.1186/s13229-017-0121-4.
- MacDonald L, Stevenson S. Learning interrupted: maladaptive behavior in the classroom. 2000. Updated 2010. Available from: http://www.mugsy.org/macdonald.htm. Accessed: January 24, 2017.
- Communicating and interacting. The National Autistic Society. December 2015. Accessed April 8, 2017. Available from: http://www.autism.org.uk/about/communication/communicating.aspx.
- Autism guidance for health professionals. The National Autistic Society. December 2016. Accessed April 8, 2017. Available from: http://www.autism.org.uk/professionals/health-workers/guidance.aspx.
- Basic strategies for better communication. Synapse. Accessed April 8, 2017. Available from: https://autism-help.org/communication-basic-strategies-autism.htm.
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- Shiff A, Tarbox J, Lanagan T, Farag P. Establishing compliance with liquid medication administration in a child with autism. J Appl Behav Anal. 2011;44(2):381-385.