Why Teens with Chronic Illness Might Miss Their Meds

Chronically ill teens found to have barriers specific to adolescence unknown to parents and doctors

(RxWiki News) Teens with chronic illnesses often have a hard time keeping up with their medication. And parents and doctors are not always aware of the issues some teens face.

A recent review found that teens dealing with chronic illness face a lot of barriers to adhering to their medication; some of them are unique to being a teenager, such as worrying about peer support and rejection, and lacking familial support at home.

The authors argue that healthcare professionals need to communicate more directly with adolescents about their treatment.

"Include your teen in their treatment discussions."

The lead author of this review was Kirsten A. Boisen, MD, PhD, from the Center of Adolescent Medicine at Copenhagen University Hospital Rigshospitalet in Denmark.

This review included a total of 28 previously published studies on chronically ill teens between the ages of 13 and 19. All of the studies had asked teens to self-report the barriers they faced in staying on their medication.

All of the studies were from the western region of the world. Study population sizes ranged from 31 to 1,061, with a total of 2,501 participants in all the studies.

All of these teenagers had one or more of the following chronic conditions:

  • Diabetes
  • Asthma
  • Cystic fibrosis — a genetic condition that causes abnormal mucus production in the lungs and digestive system
  • Inflammatory bowel disease (IBD)
  • Chronic kidney disease
  • Epilepsy — a brain condition that causes seizures
  • Rheumatoid arthritis — a condition usually affecting the wrist and finger joints that causes pain, swelling, stiffness and loss of function
  • Sickle cell disease — a condition in which the body produces blood cells that are abnormally shaped and leads to issues with blood flow
  • Hemophilia — a condition in which the blood does not clot
  • Cancer
  • Pierre Robin syndrome — a condition in which a baby is born with a smaller-than-normal lower jaw that causes the tongue to fall back in the throat and make it difficult to breathe
  • Kidney, liver or heart transplant

The studies did not include teens with mental health conditions.

From their review, the researchers found that there were seven categories of barriers that were commonly reported:

  1. Lack of supporting relationships with parents, peers and health professionals
  2. Desire to live a ‘normal’ life
  3. Concern about unwanted side effects or being skeptical that medication is necessary
  4. Forgetfulness
  5. Being disorganized
  6. Confusion because of complex treatment regimen
  7. Financial costs

The findings showed that these barriers were common to chronic illness in general and not specific to any one condition.

Concern for physical well-being because of unwanted side effects, generally forgetting, the desire to be ‘normal’, issues with peer support and conflict with and lack of support from parents were the five most common issues in these studies.

Physical well-being was reported in 21 studies for 11 conditions, forgetting was reported in 18 studies for nine conditions, desire for normality was reported in 10 studies for eight conditions, peer issues was reported in 15 studies for seven conditions, and issues with parents was reported in 12 studies for seven conditions.

The researchers found that forgetfulness, concern about unwanted side effects and being skeptical that medication was necessary were three barriers that also had been reported by adults as well as teens’ parents and healthcare providers.

However, the researchers suggested that striving for normality, concern about peers and conflicts at home were barriers that were specific to teen illness because they were not reported by adults or parents and healthcare providers.

The authors of this review suggested that these findings show that parents and healthcare providers may not always be aware of the issues that teenagers with chronic illness face; therefore they believe that it is necessary to include teens in the discussion about their treatment.

The authors noted a few limitations of their review.

First, all the barriers reported are treated as equally problematic in the review, even though some only account for a small percentage of difficulties in specific study data. Second, each study author may have interpreted the different types of barriers differently. 

Third, this review only focused on the barriers that teens self-reported. Fourth, each study did not consider all the barriers or conditions. Lastly, chronic conditions differ in severity and thus differ in treatment burden.

“Having 3 teenagers myself, I sympathize with the challenges our young adults are facing when it comes to medication adherence," said Jason Poquette, BPharm, RPh, registered pharmacist. "It is so important to help our teens take their meds and also talk about the obstacles and challenges they are facing.

"In counseling I try to focus on hope, while providing practical strategies to help minimize the social impact of dealing with their chronic illness.  With diabetes we can talk about pens and pumps as alternatives to vials and syringes. With other chronic conditions I try to encourage the use of technology like phone apps to help remind them to take their meds, pharmacy websites for ordering their own refills and online discussion forums where teens can talk to others facing the same issues," said Poquette, who was not involved in this study.

"Better adherence will  mean better results and greater control over their health in the long run," he said.

This review was published online on October 29 in the Journal of Adolescent Health.

Ville Heises Legat and Dagmar Marshalls Fond provided funding.

Review Date: 
October 29, 2013