Obstructive sleep apnea (OSA) is prevalent in 1% to 4% of the general pediatric population.1 The first line of treatment for OSA in this group is usually adenotonsillectomy (AT). In those for whom AT is not an option, or has been unsuccessful in eliminating the OSA, the next line of therapy is positive airway pressure (PAP), either continuous (CPAP) or bilevel. Achieving good compliance with PAP on a regular basis, especially in children with developmental delay and/or special needs, is often seen as quite daunting. Convincing otherwise healthy adults with OSA to buy into the use of PAP on a regular basis is not always easy2; this can be magnified severalfold in children who, because of their developmental stage, are unable to comprehend the reasons for using it, are unwilling to cooperate with its use, or encounter sensory integration issues with the therapy. Though good compliance with PAP can be difficult to achieve in children, with time, determination, and the right combination of tactics, the likelihood of success can be increased.

Compliance Rates

O’Donnell et al3 reported on 79 children ages 6 to 18 started on nasal CPAP during a 46-month period. In this series, the child and at least one caregiver met with a sleep technologist, in advance of the titration study, who selected a suitable mask, instructed the parents on how to gradually apply the mask, and, in some cases, recommended the use of low pressure untitrated PAP at home in advance of the titration study to accustom the child to the sensation of airflow on the face. Eighteen percent (14/79) refused to use PAP; of those who did use it, 48% (31/65) took to it immediately. The other 52% of children (34/65) gradually adapted to its use over a period of time ranging between 9 and 295 days. Adherence was greatest in children ages 6-12 compared with those under 6 or between the ages of 13 and 18. The average daily use in all children was 4.7 hours/night.

While using PAP in children can be challenging, it is often perceived as more difficult than it is. This perception can result in undertreatment when its use is discontinued after providers and families “give up,” assuming there is nothing that can be done to make its use easier. It can also lead to overtreatment, when other, more aggressive interventions are chosen without PAP having been given a proper chance to succeed.

The Right Combination

The Children’s Hospital Boston Sleep Disorders Program works to enhance adherence with PAP in the pediatric population. By being “compliance minded” from the introduction of the therapy to applying close monitoring, intervention, and follow-up strategies, the program enables pediatric CPAP patients to have a better chance at successful therapy. The following protocol is employed at the Children’s Hospital Boston Sleep Disorders Program.

During the Titration Study. PAP is initiated in accordance with the comfort level of the child. Some children, though willing to wear the mask at home, refuse to wear it the night of the titration. If this is the case, placement of the mask is deferred until after the child has fallen asleep. Other children will agree to wear the mask, but do not tolerate the PAP itself, in which case the PAP is only started after the child has fallen asleep.

PAP (generally CPAP) is titrated to eliminate obstruction in 1-2 cm H2O increments, and in cases in which the level of CPAP necessary to control obstruction is seen to cause expiratory discomfort, bilevel is initiated so as to afford expiratory relief and make its use more tolerable.

Trouble-shooting. Complaints of waking up with a dry mouth, or breathing through an open mouth, while using a nasal mask may be the result of nasal congestion and insufficient use of the heated humidifier. The parent and child (if capable) are encouraged to increase the humidifier settings as high as tolerated to reduce nasal mucosal engorgement and the increased resistance it can cause. One should also weigh whether the child might benefit from the use of a chin strap or a full face mask.

One problem that can result from the use of the heated humidifier is the condensation of water in the air hose, which then sloshes around, disrupting the child’s sleep. The use of an insulating hose cover can prevent this.

Some children with swallowing dysfunction have a tendency toward aerophagia, resulting in bloating and concerns about possible emesis. As many of these children have a G tube, venting it can relieve and prevent gastric distention. If the child receives nighttime feeds through the G tube, adjustments in the feeding schedule such as lengthening the feeding period and reducing the rate may be necessary.

When a child has profound developmental delay and cannot tolerate the mask, the use of a hypnotic may be helpful, allowing the PAP to be started once the child has fallen asleep. When a child finds using the PAP at the prescribed pressure settings uncomfortable, it may be necessary to turn it on after they have fallen asleep; maximize the ramp time; lower the pressure to allow for gradual habituation over time; and/or transition to bilevel.

Downloaded compliance data can be very useful for the treating physician. Research has found that parents significantly overreport the hours PAP is being used by their children. Marcus et al6 reported on 29 children ages 2 to 16 followed for 6 months after being started on PAP to treat OSA. Prior to its initiation, the children underwent 2 weeks of mask habituation while awake through behavioral techniques taught to the parents. Compliance data for the first 6 months of use were downloaded from the devices and analyzed. Eight children dropped out of the study; the data for the other 21 showed an average nightly use of 5.3 hours. Of particular interest was the fact that parents overreported their child’s use of PAP by more than 30% on average as compared to the actual data.

However, it is not unusual for parents to underestimate the actual use, to become frustrated by what they perceive as a lack of progress by their child in adapting to the PAP, and to become discouraged, even to the point of giving up on it. As the adaptation can be a lengthy process, being able to demonstrate to the parents that their child is indeed making slow but steady progress despite their impression that their child keeps on removing the mask at night can be very reassuring and sustain their efforts to achieve consistent use.

Follow-up. Once regular use is achieved, follow-up visits are scheduled in accordance with the child’s age and circumstances. In addition to the points discussed previously, attention is paid to whether the child has outgrown the particular interface prescribed, and whether replacement disposables are being supplied on a regular basis. Also, it is important to consider any changes in the child’s medical status (growth, changes in body weight, recent surgeries, or medication changes) that may have rendered the PAP settings inappropriately low or high, and that would be a reason for repeating a titration study.  

Dennis Rosen, MD, is a pediatric pulmonologist and sleep specialist at Children’s Hospital Boston, where he is a member of the Division of Respiratory Diseases and associate medical director of the Sleep Disorders Program. He is an instructor in pediatrics at Harvard Medical School. For further information, contact [email protected].

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