Adherence Can Pose Challenges

[Guest guest]

Hi,

I found this article on the CFF-Website and since some of you have

mentioned how difficult it is for teens with CF to stick to their

treatments this may give you some arguments.

Peace

Torsten

Adherence Can Pose Challenges

People with chronic illnesses face life-threatening consequences,

which can becompounded by not following recommended treatment

regimens. Individuals withcystic fibrosis (CF) face a major

challenge, as treatments for this disease can beextensive and time

consuming. In particular, people with CF typically require

nebulized medications, airway clearance techniques, increased calorie

intake,and enzymes with each meal and snack. Fitting all of these

treatments into a busy day can be quite difficult! This article

provides practical tips to ensure better adherence to prescribed

treatments. As an additional resource, it is recommended

that people with CF receive treatment from a center within the Cystic

Fibrosis Foundation's Care Center Network. For the nearest location,

call (800) FIGHT CF or access www.cff.org.

Why is adherence to treatment an important focusfor individuals with

CF?

Recent advances in our understanding of CF and in medical technologies

have resulted in new and potentially more effective treatments for

CF. However, to benefit from these new treatments, people with CF

must be able to fit them into their daily routines. Some of these

treatments take a lot of time and are complex — two factors that

affect how successful people with CF are in adhering to their

treatments. Increasing adherence to prescribed therapies is important

for several reasons. First, studies suggest that the standard

treatments for CF, such as nebulized medications to open and treat

the airways and airway clearance techniques to move secretions

up and out, are effective in delaying the progression of lung damage.

Second, it is important to prevent lung damage so that the benefits

of current and/or new therapeutics may be realized. Third, adherence

problems can become a source of conflict for families leading to

arguments and nagging.

How common are adherence problems and what are the consequences?

Across a number of different chronic illnesses, it appears that only

about 50 percent of people adhere to their recommended medical

regimen. This is true for adults as well as children — but

adolescents tend to have lower rates of adherence. In CF, adherence

to medications tends to be highest, whereas adherence to the more

time-consuming and difficult parts of the treatment regimen, such as

chest physical therapy (CPT), tend to be the lowest. For example, one

study showed that even in the hospital, only 65 percent of teens

adhered to their CPT routine. In another study of 45 adolescents at

two large CF care centers, parents reported that most teens did

their aerosol treatments twice a day at home. When this was compared

to what the physician had prescribed, 71 percent of teens were

considered adherent and 29 percent non-adherent. For CPT, only 34

percent of teens did CPT twice a day, and fewer than 50 percent were

considered adherent.

Many people with CF find that increasing calories to 125-150

percent of the Recommended Daily Allowance is also difficult,

and studies have shown that adherence to dietary recommendations

is quite low, only 16-20 percent. In one study, nearly

half the parents (47 percent) did not understand that changes

in diet were part of the CF regimen. In another study of 47

patients with CF (ages 1-26) and their parents, 19 percent were

not taking their enzymes at the recommended time. Such

misunderstandings can be easily avoided by seeking specific

guidance from your local CF Foundation care center.

Poor adherence to treatments can have serious health consequences.

These consequences can include: 1) increased

symptoms and increased frequency of infections; 2) additional

hospitalizations; 3) irreversible damage to the lungs;

and 4) increased healthcare costs. An important next step

is to identify the reasons for non-adherence and develop

effective strategies to increase adherence.

What are the most common reasons for poor adherence?

There are many reasons individuals with CF have

difficulty adhering to their treatment regimen. The majority

of these reasons fall into three main categories.

Unknowing non-adherence: lack of information, misunderstandings,

misconceptions. Many studies have shown

that people with CF and their families often have inadequate

or inaccurate information about how and when to

take certain medications. For example, in a National Institutes

of Health nutrition study conducted at four CF care

centers, many parents did not know that enzymes must be

taken before eating and that they are effective for only 30-

45 minutes. Despite good intentions, this lack of knowledge

may lead to poor adherence.

Erratic adherence: forgetting, fitting treatments in. This

is one of the most common reasons for non-adherence. It

can be difficult to remember to take enzymes along on a

shopping trip, to a restaurant, or to a friend's house and

so forgetting to take them is very common. For most families,

daily life is hectic and filled with activities and

responsibilities. It can be difficult to find the time to do

each nebulizer treatment, followed by airway clearance.

Intelligent/Deliberate non-adherence: wanting to be " normal, "

disliking the side effects. This type of non-adherence

reflects a thoughtful choice or decision not to do a treatment.

This is very common for children and teens with CF,

who do not want be " different " from their friends, and so

may not take their enzymes at school before lunch. They

may also decide not to do their treatments when invited to

stay overnight at a friend's house. Unpleasant side effects

may also discourage individuals from taking their

medications or doing their treatments.

There are other factors that affect adherence, such as the

cost and availability of medications, the frequency and

length of treatment, and the developmental stage of the

person with CF. When adherence begins to become a problem,

contact a counselor at the nearest CF Foundation

care center to discuss additional solutions.

How can adherence to treatment be improved?

Make sure you understand how and when to take

each medication or perform each treatment. Even if this

was explained to you at an earlier point, do not hesitate to

ask for a review of this information at your next clinic visit.

Ask for a written treatment plan, as it is important to have

this information documented for future reference.

Make sure you are provided with the skills to do your treatments

correctly. All forms of airway clearance require the

use of correct techniques. Using a nebulizer mask or a metered

dose inhaler also requires using the right technique to

get the most benefit. Also, the sequence of treatments is

important. Be sure to ask your physician to advise you on

the most beneficial ordering system of your particular treatments.

When new treatments are added, find out where

they fit into the sequence already established.

Identify the barriers to good adherence and then brainstorm

solutions to those problems. Brainstorming means

thinking creatively— " out of the box " —in order to find

new solutions to old problems. Here is an example of

creative brainstorming: One of our 14-year-old female basketball

stars did not like doing her aerosol treatment in the

locker room before a game. Her dad suggested she do it in

the car on the way to the game using an electrical adapter

for the nebulizer, plugged into the cigarette lighter. This

was a great solution for her!

Summary

Adhering to an effective CF treatment regimen is challenging,

and problems with adherence are common. New

and potentially effective treatments are in development,

and it is important to learn how to fit them into everyday

life. Developing a relationship with a local CF Foundation-

accredited care center team is an effective way to

obtain the knowledge and skills needed to adhere to treatments.

There is growing awareness in the healthcare

community that adherence is a key to good health. Identifying

and solving adherence problems will help manage

CF while still maintaining a high quality of life!