BHIPP Bulletin

Volume 8, Issue 7

January 2023

Medical Non-Adherence and Strategies to Intervene

This month's BHIPP Bulletin is a contribution from

Rick Ostrander, EdD, Associate Professor in the Department of Psychiatry and Behavioral Sciences at Johns Hopkins School of Medicine,

Founder of Pediatric Medical Psychology Program at Johns Hopkins Children's Center and BHIPP Consultant.


Medical non-adherence is a common problem that has significant health implications and is also a primary driver of health care costs. This article will briefly review the forms of non-adherence among pediatric populations and how to monitor, prevent and intervene with this clinical population.

The World Health Organization defines adherence as the extent to which a person’s behavior corresponds with agreed recommendations from a health care provider. The level of adherence tends to vary depending on the medical condition. While children with psychiatric conditions often have high rates of medical non-adherence, other medical disorders also have high rates as well. Below are the adherence rates for some chronic conditions seen in pediatric practices: 

Adherence is Variable Within Treatments and Across Diseases


Adherence rates in clinical research samples are typically 50% at 1 year after beginning treatment (Chacko, et. al., 2010)


Selective serotonin reuptake inhibitors (SSRIs) were discontinued by 54% of treated youth at 3 months and by 74.3% at 6 months (Bull, et. al., 2002)


60% of patients do no take antiepileptic medications as prescribed (Modi, Rausch, & Glauser, 2011)


31.5% of prescribed corticosteroid treatments are used by young patients (Seid, et. al., 2012)


Among children and adolescents with acute lymphoblastic leukemia adherence to oral mercaptopurine during maintenance treatment revealed that 44% are non-adherent (Bhatia, et. al., 2012)

Inflammatory Bowel Disease

Documented IBD adherence rates range from 16% to 62% (Gray, et. al., 2012)

Sickle Cell Disease

Adherence rates ranged from 12% to 100% across all medications (Loiselle, 2015)

Among youth with any Chronic Conditions

Approximately 50% of children and 65-90% of adolescents do not consistently adhere to their medical regiments. Over time, and as soon as 6 months post-diagnosis, adherence drops among youth with chronic conditions (Rapoff, 2010)


Non-adherence to treatment is particularly detrimental given the significant medical and financial impact. Medical non-adherence has been related to increases in illness severity, increased morbidity, and higher mortality. The resulting increase in hospital visits and avoidable inpatient stays also contributes to increases in overall healthcare costs (McGrady & Hommel, 2013).  In contrast, interventions that include efforts to address adherence are associated with improved psychological functioning and improved overall quality of life (Rapoff, 2010).


Assessment of compliance is an important first step in detecting non-adherence. A variety of methods have effectively been used to assess adherence; however, each of these methods have short comings and could fail to identify some patients. Identifying non-adherence can include patient and parent reports, electronic monitors, pill counts, pharmacy refills, observational methods, and biological assays. While the validation of adherence measures is an ongoing area of research, there is a clear need to find indicators that are both accurate and feasible for clinical purposes. Because of the limitations in the respective assessment approaches used to assess non-adherence, it is probably best to include two data sources as part of clinical practice. For example, talking individually with both the child and their parents would provide a more comprehensive appraisal than relying on the parent alone. Sometimes medical records are shared across providers, including pharmacy records. This allows the physician to determine whether the prescription has been (re)filled in accordance with the prescribed treatment (Rapoff, 2010). 


There are both modifiable and non-modifiable factors that serve to increase the risk for non-adherence. For example, children that are very young or oppositional are more likely to have difficulties with adhering to medical treatment. Families with lower income or those without insurance also have particularly high rates of medical non-adherence. Issues involving the health care system can contribute to non-adherence by creating roadblocks in communication between the provider and the patient or their families. A variety of cultural factors could also play a role, including limited English proficiency. 

While these broad considerations may contribute directly or indirectly to problems with adherence, a closer look would suggest there are pragmatic explanations that are nested within these broader considerations. For example, the daily hassles of living, family stress, and typical family conflict are among the biggest barriers to medication adherence. Additionally, the patients and their parents may not understand the diagnosis, have concerns about psychopharmacological treatment, and fear medication side effects. This is especially true in children with chronic diseases (Gardiner & Dvorkin, 2006).

Some of the most common reasons families give for not adhering to the medical instructions can be easily addressed. For example, Rapoff and colleagues asked parents and their children to identify specific barriers that account for poor adherence (Rapoff, Lootens & Tsai, 2012; Rapoff & Calkins‐Smith, 2020). As reflected by the following table, forgetting was consistently reported to be a common explanation noted by both parents and patients; likewise, treatments that interfered with daily activities or were overly complex may compromise the fidelity to treatment. Young people also identify problems in adjusting to their illness and disagreements with their healthcare regime as roadblocks to maintaining adherence. These difficulties that young people self-report may relate to why parents often report that their child’s oppositionality or the bad taste of medication are significant obstacles to adherence.

What are the Typical Reasons Pediatric Patients Do Not Adherence to Treatment

Topic Five Barriers Identified by Young People with a Chronic Disease

  • Patient or parent forgets
  • Treatment interferes with daily activities
  • Psychosocial adjustment difficulties
  • Disagreement or communication problems with health care provider
  • Regimen too complex

Top Five Barriers Identified by Parents of a Child with a Chronic Disease

  • Patient or parent forgets
  • Patient dislikes medication taste
  • Oppositional behavior
  • Treatment interferes with daily activities
  • Difficulty incorporating treatment regimen into daily activities


Given the expressed barriers to implementing treatment recommendations, how can physicians and parents help increase medical adherence? Since forgetting is one of the most common reasons for non-adherence, reminders can help parents and children remember to take medications. While weekly pill containers and other ways of monitoring medication compliance can be effective reminders, there are several apps that have been used to remind and monitor adherence in pediatric populations. Some user-friendly apps include:

Reminding and monitoring adherence is an important component to any intervention effort; however, in actual practice, the same level of clinical focus is not required across all patients. For example, Rapoff and colleagues have proposed a three-tiered model for intervention (Rapoff, 2010; Rapoff & Calkins‐Smith, 2020). As reflected in the following table, incremental increases in clinical resources are required at each level, depending on the clinical circumstances or the response to less intrusive interventions. When non-adherence is more refractory, referral to a behavioral health specialist may be required. In some cases, simple behavioral protocols can quickly achieve adherence in a single behavioral health visit (Hankinson et. al., 2018). While medication compliance is the most frequent target for behavioral health interventions in most outpatient settings, the target of treatment could also involve procedural compliance (e.g., self-catheterization, needle phobia). However, less often the behavioral health intervention will need to address co-occurring mental health issues that complicate treatment or that may be a reaction to chronic health problems (Parrish et. al., 2020).  

Treatment Three-Tiered Intervention for Pediatric Non-Adherence

Primary Prevention:

  • Adherence enhancement strategies: educational (e.g., handout about medications and other treatment regimens), organizational (e.g., simplifying the number and timing of medications), behavioral (e.g., routine inquires with providers or parents)
  • Implemented by primary care providers (e.g., nurses, physicians)

Secondary Prevention:

  • Adherence enhancement strategies: Motivational interviewing, incorporate technology (e.g., telehealth), more frequent monitoring of adherence by patients and parents, involvement of the school nurse, or planned social reinforcement (e.g., parental and/or teacher praise for compliance)
  • Implemented by primary care providers (e.g., nurses, physicians)

Tertiary Prevention:

  • Adherence enhancement strategies: Token systems, written contracts, shaping or desensitization procedures, operant conditioning, problem solving to address and manage adherence barriers and psychotherapy when needed
  • Implemented by Behavioral Health Practitioner (e.g., pediatric psychologist, behavioral therapist)

While some cases may require the direct involvement of a behavioral health practitioner, primary care providers can both prevent or intervene by implementing some practices into their routine clinical care. Discussions during routine office visits are an important way to increase adherence; however, the information provided this way can be overwhelming to many parents and patients. Indeed, parents typically forget half of the information presented to them during a 15-minute meeting with a physician and most of the information retained is associated with the diagnosis (Beers, 2004).

There are several practices that can be routinely incorporated to improve adherence. For example, providing the parent educational materials (e.g., handouts) when prescribing medications will help improve adherence. In addition, there are organizational and behavioral interventions that can also be effective and simple to implement. Rather than more complex medication regimes, using once- or twice-daily medication schedules can increase compliance rates to greater than 70 percent (Gardiner & Dvorkin, 2006). For families with low or modest incomes, prescribing generic medications can be less costly and increase the likelihood that prescriptions will be filled. The use of sweeteners, chocolate flavoring, or chocolate chasers can help to mask bitter medications and to improve a child’s willingness to take medicine (Gardiner & Dvorkin, 2006). With parents that have difficulty in reliably implementing treatment protocols, involving the school nurse can help improve adherence. In some cases, the treatment can be incorporated in the Individual Education Plan (IEP) of children with special needs.

Parents can improve adherence by finding a way to routinely incorporate the medical treatment into the routines of life (e.g., taking medication before they get dessert). They can encourage others (e.g., teachers, school nurse, pharmacist, medical providers) to reinforce adherence. Although praising children can be a sufficient reward, providing tangible rewards for adherence can help supplement such social rewards. For example, providing a special treat, access to a preferred video game or television show are tools that parents can use to increase adherence (Gardiner & Dvorkin, 2006). 

Comprehensive meta-analyses have been published on the outcomes of adherence interventions for chronic pediatric diseases (Graves, et. al., 2010). These findings would suggest that educational interventions are important ways to address non-adherence; however, behavioral interventions such as behavioral contracting, reinforcement, self-monitoring, problem solving, and reminders are also important tools for increasing adherence. The most empirically supported approaches involve the combination of educational and behavioral interventions; indeed, several reviews have concluded that interventions involving both behavioral and educational components are significantly more effective than educational interventions alone (Graves, et. al., 2010; Pai, et. al., 2014). Graves et al. (2010) documented that a combination of behavioral and educational approaches achieves positive changes and improves both health outcomes as well as adherence. Others have found that combined interventions that include behavioral approaches, improves patient quality of life and family functioning while also decreasing healthcare utilization (McGrady & Hommel, 2013; Pai, et. al., 2014). Recent research has also supported technology-based programs including web-based and telemedicine approaches (e.g., virtual office visits, text messaging) and smartphone applications, or other electronic monitors of adherence as a strategy to facilitate improvements in adherence (Camden et. al., 2021).

As always, if you have questions about the behavioral health needs of your patients, we encourage you to call the BHIPP consultation line at 

855-MD-BHIPP (632-4477), open 9am-5pm Monday-Friday, for resource/referral networking or consultation support.

We will keep you informed about all our services and training events through our website ( and monthly e-newsletters. Additionally, BHIPP is on LinkedIn, Twitter, and Facebook. We invite you to follow us there to stay up-to-date on upcoming training events, pediatric mental health research, and resources for providers, families and children.


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BHIPP is supported by funding from the Maryland Department of Health, Behavioral Health Administration and operates as a collaboration between the University of Maryland School of Medicine, the Johns Hopkins University School of Medicine, Salisbury University and Morgan State University.

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