Adherence and Children
What is adherence and why does it matter?
Adherence or compliance is how often positive airway pressure or PAP is used, counting the both the number of days and the number of hours used. The minimal goal is at least 4 hours per night for 70% or 5 out of 7 nights per week. The longer and more regularly used, PAP can greatly improve the quality of sleep and help to reduce daytime symptoms.
Why does the doctor want to know how much Positive Airway Pressure is being used?
The doctor wants to know how things are going in order to check that the therapy is working for the child and that the child is benefiting from wearing it. A typical adherence or compliance report contains:
- Percentage of use by days per month (Example 27 out of 30 day or 90%)
- Percentage of use over 4 hours per night (Example 15 out of 30 days or 30%)
- Average hours used when PAP is worn (Example 7hrs. 41 minutes)
- Leak rates
- AHI (Apnea Hypopnea Index-the number of respiratory events (apnea) that occur on average
Monitoring usage regularly helps the doctor to see if there are any values outside of the normal range that may need adjusting to improve usage. Whether it means increasing or decreasing the pressure(s), suggesting a mask change or to encourage greater PAP use overall, checking adherence is a very important part of positive airway pressure therapy.
How can children become adherent with Positive Airway Pressure (PAP)?
PAP adherence can be a challenge for many children and their caregivers but that does not mean it is impossible! Sometimes there are barriers or things that can prevent regular use. Maybe the mask is too big or too small. Maybe it gets taken off in the middle of the night and stays off until the morning. Maybe it was just a long day and trying to get the mask and machine on seems like too much. All of these are common occurrences and luckily all have solutions.
The most important thing to remember with Positive Airway Pressure (PAP) and children is that it is a medical treatment for a medical condition and worth the energy to work on adherence.
It is also important to add PAP into the regular, nighttime or bedtime routine. If there is not one already established, try to create one together with the child. Screen limitation before bed, quiet activities like reading or drawing, a shower or bath, teeth brushing are all good to include. Some children benefit from a chart showing the different activities, some children like to take charge and show they can do it on their own. Whatever works best for you and the child is what is right!
Tips & Reminders
For Younger Children
Positive Airway Pressure (PAP) may not make a lot of sense to younger children and they may wonder why they have to wear a funny mask on their face.
- Keep explanations simple and not overly complex.
- Let them touch the mask, put it on and off their face with and without the pressure going.
- Start by having the child wear it for short periods during the daytime to get used to how it feels: during commercial breaks of their favorite show, while they are playing a game, anything that can be a distraction so the child can get used to the sensation without paying direct attention to it.
- A rewards-based system may be the key to success. Work together to come up with worthy rewards and set a goal that can be met easily at first to encourage success. Increase the goal in small increments to continue success.
- Have a support system, people who can also encourage usage or answer questions.
For School-Aged ChildrenPositive Airway Pressure (PAP) may make some sense to them. Use of analogies or examples like a paper tube needing to stay round to be open may help them understand what PAP does. Children may also be able to verbalize more of what they feel when wearing therapy.
- Encourage questions for what the child may not understand.
- Encourage “ownership” or responsibility over the machine: the child is in charge of making sure the water is in the machine, the hose is connected and the mask is clean and ready.
- Add fun stickers to the mask (just not covering the exhalation port) to make it personalized
- If the pressure is difficult to get used to, encourage use while doing distracting activities: homework, while playing games, or watching their favorite show.
- Encourage little successes along the way-little successes add up over time!
For Older Children/TeensPositive Airway Pressure (PAP) may be well understood. The child or teen may be able to take more of a solo-role in their therapy.
- Encourage open communication for use and non-use: if not using work to find the root cause- Mask issue? Pressure issue? Nasal dryness?
- For teens especially discuss the dangers of drowsy driving and why wearing CPAP consistently is an important step in preventing such dangers.
- Encourage an active role in sleep health, set a good example with sleep hygiene for yourself, limit late night screen usage.