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

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In the midst of furious showdowns on health care reform at town hall meetings, a moment of peace surfaced in Montana when President Obama drew bipartisan applause after calling a mother heroic.  This mother of two had voiced her concern about the Medicaid program she relied on for her child who has multiple chronic conditions.  The president reassured her and went on to discuss how our disease-care system does not proactively manage chronic conditions.

Children and young adults with chronic medical conditions and disabilities (CMCD) need proactive management now and for their entire lives.  Our health care system fails to serve the young people who need it the most.

Children with CMCD are completely dependent on adults for their health care.  Poor health management negatively affects their growth and development, education, and socialization – and drags the entire family down.  As the mother of a young adult with CMCD and the founder of a non-profit created because of our experiences with poor quality health care, I cannot understand why this population is not a major focus of health care reform.

One path to start on is to build on successful programs to create a comprehensive system of care.  Take a look at the 35% of children with CMCD covered by SCHIP/Medicaid. Medicaid provides a specialized set of comprehensive services known as EPSDT, Early Periodic Screening, Diagnosis, and Treatment Program. The current model of care in favor for chronic conditions is the medical home. First conceptualized by the American Academy of Pediatrics for children with CMCD in the 1960s, the medical home has yet to become the standard of care for children with CMCD in Medicaid.  Pairing EPSDT with the medical home would be a step forward in developing a system of care for children covered by Medicaid.    Another step is to expand EPSDT and medical homes to cover the remaining publicly covered children with CMCD enrolled in SCHIP.

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As our nation brainstorms the best way to reduce the millions of uninsured, we need to focus on the largest and fastest growing portion: 13.7 million young adults:

• 18-29 year olds make up just 17% of the population but 30% of the uninsured, and
• Entering adulthood triggers a serious risk of becoming uninsured as the rate almost triples from 11% to 29%.

As we look at this age group, it is critical to hone in on young adults with chronic medical conditions & disabilities (CMCD) since they cannot afford a single day without coverage.

Aware of the need to continue care, they, or their parents, are inclined to seek coverage. However, young adults with CMCD encounter many obstacles:

• Only 54% are able to attend college or work, usual prerequisites for insurance;
• Relying on individual coverage is risky because of pre-existing conditions and inadequate benefits;
• Young adults with CMCD are three times more likely than their healthy peers to earn under $15,000 a year and live in poverty, another risk factor for becoming uninsured; and
• A vicious cycle ensues when 54% of young adults with CMCD lack a usual source of care and two-thirds delay or miss care because of costs. Foregoing treatment hinders their ability to maintain the health status needed to go to college or work.

How can we assess the significance of a specific population without appropriate studies?
We had a logical reason for not studying this population – until now. In the past, children with CMCD did not survive to adulthood. Thanks to advances in medicine paralleled by a rise in chronic conditions, we now face a tidal wave of emerging adults with CMCD:

• Every year, over half a million children with CMCD enter adulthood, and
• Extrapolation of child health data reveals 4.5 million young adults aged 18-24 years have CMCD.

Unprepared, we are unable to build on the systems of support designed for them as children. These young adults with CMCD who struggled as children to be like everyone else and gain independence from their parents fall off a cliff, so to speak, when they turn 19. They age out of support systems, they age out of insurance, but what they are unable to age out of is dependence on their parents.

Even if young adults with CMCD are fortunate to have coverage, they experience another major problem with access: the dearth of adult physicians available, willing, and able to care for their childhood onset conditions. Too often, these young adults remain under the care of their pediatric providers, sometimes forever.

We need to ensure young adults with CMCD are included in health care discussions. What role do they play in issues regarding the uninsured, health care costs and resource utilization, poverty, and social welfare? What impact do they have on the workforce and its productivity? Can we afford to keep them invisible?

Beyond numbers, a moral imperative also presents itself. As a nation committed to promising our children good health and education, are we extending this promise to all of our children and young adults? Shouldn’t our children with CMCD have a fair shot of growing up into educated young adults with the best possible health?

As we embark on one of the greatest changes our health care system has ever seen, will we do the right thing and embrace children & young adults with chronic medical conditions & disabilities – the population that has the most to gain from improved access and quality health care over an entire life’s span – and put their needs at the center of the discussion?