Medication adherence: Lessons from kids with chronic conditions

medication adherenceThe American Heart Association recommends 30 minutes of moderate exercise at least five days per week.

The American Dental Association promotes flossing every day.

The Food and Drug Administration’s 2015-2020 Dietary Guidelines for Americans advises we consume less than 10 percent of our calories from added sugars, and also less than 10 percent from saturated fats.

How many of us actually do what we’re told, though?

The Center for Disease Control estimates that 80 percent of American adults do not follow the exercise recommendation, and a survey by a dental association found that 60 percent of adults do not follow the flossing guidelines. With almost two thirds of Americans now overweight, our collective commitment to those pesky dietary guidelines falls short as well. As a group, it seems we are not very good at following doctors’ orders.

Why health advice can be hard to follow

In graduate school, I was a member of a research lab that studied, among other things, medical adherence in chronic illness populations such as youth with cystic fibrosis or asthma. We defined adherence as actively following aspects of a treatment plan, such as taking medications or checking blood sugar. When orienting new undergraduates to the lab, the faculty member directing the research would often take a poll.

She would ask, “How many of you have been prescribed antibiotics at some point in the past couple of years?” Most of the hands would go up. “And how many of you followed the doctor’s recommendation to finish all of those antibiotics?” The students often looked around at one another, unsure whether to raise their hands, or did not raise them at all.

Simply put, most of us do not follow simple medical recommendations for a variety of reasons. We forget; we feel well, and therefore aren’t motivated to put in the time. Other activities get in the way.

The purpose of the polling exercise was to illustrate that, if so many of us have trouble following such basic recommendations, imagine how difficult it is for people with chronic illnesses to follow their more complex regimens. For example, patients with cystic fibrosis report spending over an hour and a half on their various treatments each day, while patients with Type 1 diabetes are asked to check their blood sugar and self-administer insulin multiple times per day. Patients must learn how to integrate these needs into the routine of their everyday lives.

For kids with chronic disease, medication adherence is critical

In the Department of Psychiatry’s Medical Coping Clinic, patients often come for help with following a treatment plan. Many factors can interfere with treatment adherence, such as:

  • complexity of the treatment regimen, which leads to difficulty remembering, scheduling or organizing how one will follow the plan or difficulty with the skills involved in implementing the treatment (e.g., how to count carbs in diabetes).
  • medication characteristics, such as side effects or cost.
  • limited knowledge of what treatments do and why they are important.
  • not feeling ill and therefore, feeling less need for long-term treatments.
  • embarrassment or stigma associated with one’s illness. (Related: a reluctance to self-treat because it reminds the patient of his or her illness).
  • depression interfering with self-care or anxiety interfering with ability to do treatments, such as injections or swallowing pills.

How pediatric providers can help

Fortunately, there are approaches that can help children and families overcome these barriers. Here are five helpful tips:

  1. Use visual schedules, calendars and mobile phone reminders to help with remembering, scheduling and organizing treatments.
  2. Have patients work with a nurse or other clinician to practice skills associated with doing treatments.
  3. Educate children and their parents about why treatments are important and what they do.
  4. Help children connect with others who share their illness so they feel less alone, embarrassed, or stigmatized.
  5. Refer patients to a mental health provider if any depression, anxiety or adjustment issues are contributing to their difficulty following a treatment regimen. This can be done through brief interventions in the setting of a medical clinic, or in therapy if longer-term work is needed. Behavioral approaches to medication adherence can include problem solving, building motivation, and working on the thoughts and actions that are making things difficult.

Working with children on these issues can also help remind all of us about ways we can better organize our lives, stay informed and prioritize physical and mental health.

Snell_Carolyn2Carolyn Snell, PhD, attended graduate school at the University of Miami before completing her internship at Stanford Children’s Health/Children’s Health Council and her fellowship in pediatric psychology at Boston Children’s. She is a staff psychologist in the Department of Psychiatry’s Medical Coping Clinic and an Instructor in Psychology at Harvard Medical School.