If medication adherence is a problem for adults, consider how difficult it is for young people with chronic medical conditions.

Alternate flavorings, formulations, and suspensions can help the medicine go down in children.  But what is the solution when taste is not the problem?  One approach we need to take is to put the young person center and first.  Talking past the child to the parents is a practice that continues today and even with many young adults patients.  If we want young people to succeed in self-medication management, they must be the drivers of their care.

Child-centered care:

 Psychoeducation: As soon as the child is able to participate, he needs to be educated about his condition and medication regimen so he understands what his happening to his body.  Participating in the decision-making process, e.g., whether to take the morning medicine after brushing teeth or at breakfast, protects the child’s autonomy and sense of control.

Contracts help in getting the young person to take ownership, and patient records are an age-old but effective method of monitoring adherence.  Children can check boxes on printed forms, manually or computerized; parents can help by incentivizing adherence with tokens or rewards.  Encouraging the child to share the record in the next medical visit further increases his autonomy – a critical issue when one loses the sense of control over one’s body.  Physician follow-up is critical to promoting adherence, e.g., counting pills, checking records.

Communication skills and understanding the young person’s perspective are key ingredients to building trust. A non-judgmental attitude along with a willingness to negotiate and temporarily modify medications can help a young person understand the need to adhere to a regimen.

Problems may surface when the child enters adolescence and considers engaging in risk-taking behaviors.  This is also the time to foster health self-management and start the transition process to adult-oriented health care.  As the teen matures, he must be educated and encouraged to learn about his condition and management. The physician should work with the family to develop a step-wise approach to increase responsibility, e.g., first succeed at level 1 for x months before moving up to level to 2.  For example:

1. Monitor patient-recorded adherence chart
2. Make doctor’s appointments and record on chart (physician visits are associated with adherence)
3. Order prescriptions and record on chart
4. Fill medication trays

Of course, parent buy-in is critical.  They need to be educated about the condition, medication, side-effects, costs, and they should be given a written strategy to manage medications.  In addition, a school-based team approach may be needed. Parents’ personal and cultural beliefs may impact their management.  Physicians need to appraise parents and keep communication channels open since medicating young people raises several concerns:

1. The lack of studies done in children and prescribing drugs off-label,
2. Hormonal changes in puberty effect on drug levels and health, and
3. Problems when titrating and weaning medications.

As children grow up and become self-sufficient, parents may need help in letting go and learning to taking risks with their child.

A simple technique that improves adherence is texting. Young people prefer this mode of communication: it is non-intrusive and short and sweet.  We used to prompt our daughter to take her medications by telling her in person or calling her by phone.  When I asked my daughter to text us after taking each medication dose, we witnessed a 95% improvement in self-managed adherence.  Plus, texting takes the nagging voice out of the equation, and one thinks twice before sending something negative in writing.

Young people with chronic conditions often feel isolated and say their healthy peers do not understand them.  Group psychoeducation or mentorship improves self-management and adherence, and it is financially smart.   A promising emerging practice is the use of transition coordinators and clinics to help young people with chronic medical conditions learn how to manage their own health and health care.

New technologies, e.g., health games, should be fast-forwarded to move them into implementation stage to help these young people gain control over medication adherence now.  These young people have much to gain by being in good health now and as they grow into adulthood and live their entire lives with a chronic condition.  Equally, they have much to lose from poor health status and its repercussions on their growth, development, education, social life, and quality of life.   A couple of projects in the making that I like:

1. Embeddable medication management device in teddy bears or backpacks for kids with cystic fibrosis.  Provides alerts to child and caregivers.
2. PHR application for teens to share and negotiate health care status and needs with providers.  Uses real time data: moods, music, photos.

These ideas and strategies are not rocket science.  They require a concerted commitment of time and energy, reimbursement, and financial investment.  Most of all, they require an attitude shift to make our young people with chronic medical conditions and disabilities a national priority.   These children and young adults are growing up quickly…

What are we waiting for?

Related posts:

1. The Fate of Children & Young Adults with Chronic Medical Conditions & Disabilities.
2. Run for Cover: Young Adults with Chronic Medical Conditions & Disabilities
3. Drug Adherence Throwdown: Analyzing America’s Other Drug Problem
4. Just a Spoonful of Sugar: How Healthy Gaming Can Support Drug Adherence
5. Drug Adherence: A Straightforward Personal Commitment Based On Choice

This entry was posted on Friday, October 30th, 2009 at 6:34 am and is filed under Chronic Conditions, Drug Adherence, Young Adults. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.