In the CF clinic, health psychologist Michelle Eakin works with a young patient.
As if being born with cystic fibrosis (CF) wasn’t enough, nature plays somewhat of a cruel joke on CF patients’ ability to adhere to their lifelong medications. Generally, the younger you are, the less your needs for medications and the easier to maintain them. Conversely, the older you get, the greater your medication needs but the less capable you are of sticking with your regimen, especially if you’re an adolescent.
“As children get older life’s demands take on more and more time,” explains Michelle Eakin, Ph.D., a health psychologist with the Johns Hopkins CF Center. “Teenagers have school and after-school activities, perhaps a part-time job, and at the same time they’re getting busier their treatment demands are increasing as well.”
Yet complying with strict regimens of CF therapies is critical for patients to reduce their risk of pulmonary exacerbations and lung infections, frequent ED visits and hospital stays, a poorer quality of life and shortened lifespan. So Eakin’s job is to help all CF patients, particularly adolescents, find ways to adhere. But what works best, Eakin says, is parents and practitioners educating young patients about their disease and the consequences of non-compliance before they reach adolescence.
“You wouldn’t ask a 6-year-old to set up a nebulizer by himself but there are steps he can learn to gain self efficacy and build confidence,” Eakin says. “Our research shows that children who know more about their medications and what they do, and who feel more confident in doing certain steps of the treatment, are going to be more likely to do their medications when they get older.”
But there is still the problem of how to fit lengthy CF therapies – in some cases adding up to three or four hours daily – into a busy adolescent’s day. In her study with colleague Kristin Riekert, Ph.D., of the Johns Hopkins Adherence Research Center, Eakin found self-reported adherence to airway clearance poor – ranging between 41 and 54 percent of adolescent and adult patients. Barriers identified included the burden of the treatment, social and work demands, forgetfulness, no perceived health benefit, fatigue and embarrassment related to performing treatments in public (Journal of Cystic Fibrosis, December 2010:9;6;425-432).
Another potential barrier is how the adolescent and parents address adherence. Often times the parent, who is generally more aware than the teen about health implications of not taking medications, is more motivated than the patient. The teenager isn’t thinking 10 minutes ahead, let alone 10 years, notes Eakin. So often the issue becomes one more source of conflict between the parents and the adolescent. What can be done? One thing is certain, Eakin says – nagging doesn’t help.
“Every family needs to assess how they spend their day and when is the best time for therapy,” says Eakin, “but parents who have a collaborative working relationship with their teenager are going to have more success than those who are more dogmatic and force the issue. Yelling and screaming are not going to work."
Eakin recommends that parents and teens write a contract with consequences – like no Facebook time or the family car Friday night – if the teen doesn’t comply. Parents, meanwhile, promise not to nag.
“But often it will be the parent who sabotages the agreement,” notes Eakin. “They’re not willing to enforce the consequence or stop the nagging, so the teenager gets more and more frustrated and acts out more and more.”
Other factors supporting adherence among patients, Eakin found, included regular visits to their CF clinic and feedback and support from physicians. Patients reported feeling “amped up” to do their therapies after each clinic visit, she says, and perceived their time in the CF clinic as a “positive experience that reinforced their efforts to stay on track.”